tag:blogger.com,1999:blog-90676583763744427472024-02-19T04:13:01.676+00:00Never do anything you can't explain to the paramedicsMeganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.comBlogger270125tag:blogger.com,1999:blog-9067658376374442747.post-63425513827466283602018-12-29T21:37:00.000+00:002019-01-28T21:13:02.172+00:00First and last of 2018Oh dear. I think this is a new record, one post for the entire year (Technically. I wrote on 1.1.18 but its likely I wrote it a few days before and then just posted it on the first.)<br />
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Blogging isn't for me anymore, I don't really like needlessly blogging about my health for whatever reason. There's also the fact that blogging has become somewhat of a club, its now all fashion or lifestyle etc, and if you're not doing monthly competitions from huge companies, or sponsored posts, you've probably got a lot less interest from outside other bloggers. A lot of it has also turned into vlogging which I'm personally not a huge fan of. Obviously because of lack of subtitles (its not hard guys, at least try). Lots of them don't just blog, but do things over social media. Absolutely sick of people chatting away to their instagram stories. I do wonder who has the patience to listen to someone witter away for 10 slides. At least with written pieces you can skim it.<br />
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Everyone whose blogs I used to read have stopped too. Some have sadly passed away but a lot of others have simply just moved on from that time of their life, like I have. The confusing thing is a lot of people just randomly stop, so you have no idea what happened to them unless you're following them on social media too. I'm not sure I'll bother continuing in 2019 or onward, but I won't close the blog. I do occasionally go through it to find something, read an old post about something that happened a decade ago (genuinely a decade, I feel old!) and it's nice as my memory is absolutely shocking.<br />
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I'm not doing what I used to do with a run down of each month. Partly because, like I said, my memory is awful. And 2018 has been a weird old year. At times it's gone at hyper speed, and other times you realise things that feel they happened a couple of years ago actually just happened this January or Feb. Also, because I don't have a year of blogs to refer to, I absolutely can't remember what happened in which order.<br />
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So.<br />
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First things first. I got married! On 14th April, we had the most perfect day. I can typically barely remember it, as so much happened from waking up to going to sleep that night. If I could do it all again, I'd just make the day go slower. They aren't kidding when they say it'll be over before you know it! I was quite pleased with myself for being able to hear and repeat the registrar properly (she was a clear slow, speaker though, which helped!) and during the speeches I had copies of them all to read along, as I couldn't turn to lipread properly at the top table. It still feels a little surreal that we're married, we've been together a little over 7 years now and it really doesn't feel that long at all.<br />
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My trusty 10 year old port has blocked with what is likely fibrous tissue. I think I've had one whole course of IVs through it all year, because I'm pretty sure the ones before that were dec 2017, and I pushed myself so hard to make sure I could last until March for my IVs to also work as pre wedding IVs. The one course was a nightmare. The 5 minutes syringe was taking 30 minutes. The 30 minute infusion was taking up to 2 hours. I was so exhausted and somehow it made the side effects worse (I'd have thought with it going slower it would be less or the same, but nope!) My migraines were every day, and the tablets weren't helping much (also not helped with the prescription giving me 6 at a time). The IVs didn't even really work, it took a course of pred to feel human and have an appetite for our wedding. We agreed that after putting through a solution that is supposed to dissolve stuff in the line, and also a linogram which showed that there were no bends or breaks to the line causing the block, it's time for it to be replaced. This was around February.<br />
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I'm still waiting.<br />
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It isn't totally fair to blame the hospital though. Due to the surgeon being unavailable, it was up to them to find a replacement port surgeon who could take on not just me, but the growing list of patients who needed ports too. In the end they found someone but because he initially works out of a different hospital and of course has his full time job (not a clue what he does) its been a long slog. Even slower for me as I've asked for general. Basically every adult I know has had a port done awake, some say it was fine, others say its a horrible experience. I'll hold my hands up and say I'm a massive wuss and can't do it awake. Full on knock out juice for me. This means that there's a few extra people needed and it takes a while to get sorted. I've had one course of IVs since, in a midline. I was full on saying no to this for 2 months, until someone explained what the nurses called a long line, was. As a child, I had long lines (glorified cannulas, with lines about 4 inches long, i think), and they fucking stung. I also refused to bend my arm for the full 2 weeks, so that made things 10x more difficult. When the nurses started saying I could get a long line, i told them to piss off. I absolutely wasn't doing that again. Eventually it was explained that that's a different name for a midline or picc line. Midlines go up to your armpit, picc lines go to the top of your heart. They're all placed in your arm, but a long line is placed in the crook of your arm, whereas the other two are placed a bit higher.<br />
Well, they usually are. Mine was placed about half an inch from the crook of my elbow at the side. Couldn't bend my arm more than half way, so showers were fun, and I couldn't drive or even button my coat myself. It was also the most itchiest thing I've ever had in my entire life. I itched it so much I broke the skin, through the dressing.<br />
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We originally planned to go on our honeymoon in May, thinking of going somewhere like Greece, but because of this absolute arsehole of a situation, we knew we wouldn't be able to book anything until there was some news about my port, and especially as I was originally told it would be replaced in April after the wedding. After repeatedly being told 'next couple of months' for several months, I got fed up and whinged a LOT about how they've basically crapped all over what could have been a great honeymoon. In the end we all agreed we should just book something, and they'll work around us and our (belated) honeymoon. Which means we ended up booking Orlando, Florida, going back to Universal Studios where we had our holiday in 2016, where John proposed. It's not till May 2019, but it meant we would have enough time to save up for the higher cost of universal, compared to a holiday to Greece which was more within our budget.<br />
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We did originally plan to stay at the same hotel as last time - an on site hotel, which has the added benefit of unlimited express passes meaning we skip the insane, and sometimes impossible queues that can get to over 2 hours long. The travel agent was sold out of those hotel rooms that day, so we booked a different on site hotel, Portofino Bay. I love it so much, its themed on Italy, with the outside looking like part of the Italian Riviera. This is a slightly nicer hotel than the one we originally wanted to book, and wasn't much more in price that day which was such a bonus. It's full of Italian restaurants too, I think there's around 8? I'm going to get so fat, and I'm happy with that.<br />
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It probably sounds odd, but I'm even excited for the plane journey there. It's one direct flight, Newcastle to Florida. When we went in 2016, we went with a different company, so took 3 flights and nearly missed our last flight by seconds, which stressed me so much I felt off for the first two days. Also being awake for over 40 hours and not having proper meals the whole time we were travelling really messed me up too. So this time we found the holiday through TUI and I'm so glad we looked around to find that! Even the flight time is perfect, at 12 in the afternoon. Last time it was 6am, meaning we left the house at 3am. Then the flight was delayed till 9am anyway so that was a great start, obviously.<br />
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Some new news which may be a surprise, is that I'm being assessed for a cochlear implant. This is something I spent years not wanting. But that opinion was based on knowing one person with an implant, who's hearing was still worse than mine with two hearing aids. I felt it was such a huge thing to go through for very little. After joining a group on facebook and speaking to a lot of people, I realised how much more advanced they've become compared to 7-8 years ago. The surgery is now only 1.5-3 hours, and they only make a small incision around the back of your ear (compared to the minimum of around 6 hours and shaving half your hair off to cut across your head). People have gone from slightly improved hearing to being able to speak on the phone. I have no idea where I'll land on that spectrum, but I know I'll probably never speak on the phone again. But clearer speech is something I need so desperately, even with family and John, I still struggle to understand what they've said the 5th time in a row. It's an interesting and fast paced process. I asked in late august/September to be referred and I've already had 4 appointments with another in early January. They predicted March for surgery if I was successful through the assessment (all things are looking good so far) but I've asked for it to be after May, so I don't mess up the honeymoon. It takes 4 weeks of healing before they even turn it on, then months of adjustment appointments, hearing rehab and relearning how to hear. Plus you can't fly/go on activity rides for months after while it heals, and some hospitals say you can't go on G-force roller coasters ever again in case it shifts the internal components.<br />
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I haven't spoken to anyone with CF with a cochlear implant which is the only downside. I only know one person, and they're either not wanting to reply to the message I sent in august, or missed it. But the cause of hearing loss isn't a huge issue. It's all about the resulting damage. I have basically the same nerve damage you'd get from things like meningitis. So there's lot of people out there who can give me a fairly similar idea.<br />
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Some other news I've kept under wraps, I did wonder about mentioning it or not. I GOT A JOB! An actual paying job. It feels insane to say that. It's taken 6 years, being somehow under qualified for entry level jobs, bad luck, and quite a large amount of discrimination, but I finally got there. I'll be doing an apprenticeship in customer services for the council, and a fairly impressive £3.70 per hour for the first year, which is normal for any apprenticeship. But it's still so much more than the 0 per hour I'm getting doing fuck all around the house, with some volunteering (I will miss volunteering though, I've met such a lovely group of friendly people!). Even so, anyone who complains to me about their wage for the next 12 months is getting a hard slap.<br />
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I don't think anything else has changed the whole year. There is the fact I only had 2 courses of IVs this year, which is impressive for my own track record. even without changing anything. I started regular 3 monthly IVs when I was 6, eventually having them as needed when I moved to adults (which actually ended up bringing them closer together) and the longest I'd gone was 4 months. There was a 6 month gap between my IVs in march and those in October, although there was a few courses of cipro and doxycycline. That combo works for me so much better than cipro ever did on its own, so I'm glad I have options again rather than simply just IVs. I may need to ask for a course soon though. I went nearly the whole year without getting a cold, and then got one for Christmas. I spent all of Christmas eve, Christmas day, boxing day and the day after coughing so much that my throat is still so sore even after the cold has cleared. I suppose I jinxed myself thinking it was a mild cold as it wasn't that bad until the coughing started. It was that dry cough you get with a cold, so I was pretty much drinking either water or tea constantly.<br />
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I don't think I start my job until the 3rd week in Jan so there's still some time to try and clear the cough before I immediately get the label of 'that girl who coughs all the time', which is going to happen anyway, but I'd like it not to be my first impression to everyone.<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-66617026521404555452018-01-01T21:58:00.001+00:002018-01-01T21:58:34.496+00:00Long year? Long postThis year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I write down some goals. Not resolutions, just stuff I'd like to achieve or move towards. I've been writing 'get a job' for ages now. Didn't manage that this year either. I always put 'have less Ivs' and then some twat with a cold comes along every 5 seconds and throws that out of the window.<br />
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I found some goals from last year and I have achievements I'd hope to reach in the gym. I've since stopped going to the gym, which didn't help that. Part of it was due to the fact that the gym I went to scrapped all the fee deductions (including a deduction for being referred via the GP, that £10 off was the closest thing the council gym would offer towards a prescribed membership.) So all in all, the fee I was paying, doubled. Actually it more than doubled by a few pounds. I tried to complain to this, pointing out that exercise was something that everyone should be able to access and I couldn't afford it anymore. I simply got told that with the new fees, I was saving money (I wasn't). The other reason I stopped going was because of the hemo in June. I think of it way too often and its made me a right basket case. Sometimes I'm fine, other times I cough a bit harder, like during a big physio session, and spend the next few hours worrying and wondering if its going to happen again, then wondering what time it is, what day it is, and how that affected if I would be able to contact my team if it did etc.<br />
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The even stupider thing is, I spent years going to the gym, and doing classes like body pump and metafit, but never saw much of a difference. I took pictures in the gym mirror (as you do) and I could never see a change - I only ever wanted some strength and tone, yet I looked the same as I did when I first started and ached for a week over lifting light weights and doing 10 squats. I found it off putting and tried to ignore it but still felt annoyed that other people in my classes could do stuff I couldn't manage, despite only starting the classes a week or two ago, whilst I'd been doing it for over 2 years 3x a week.<br />
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There's also the shoulder injury. After being ignored by physios for months, I went to the GP again, misunderstood her, ended up travelling 45 minutes to a different hospital for a steroid injection, for it to wear off a few months later and need a second one in December (which i got from the GP himself). Bright side is the second one didn't hurt (first one bloody knacked) but I certainly wound myself up about it whilst in the waiting room, expecting to go through the pain from the first one again. I also still have to go to see my local physio a lot and she actually said a lot of the problem is posture, and that not being picked up by my own chest physios really pissed me off.<br />
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IVs wise, I would have done better without the colds I caught (wouldn't we all), one particularly shining moment was finishing two weeks with my old rubbish port, to catch a cold the day before the needle came out and need more ivs about 3 weeks later, when I'd been hitting 3 months again which had taken a lot of work. There's also the IVs I needed for the embolisation as Queen Wuss here needed general anaesthetic as I refused to lie awake while someone poked away at a groin vein.<br />
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I completed my level 2 in bookkeeping, quite well actually. My tutor squealed and hugged me as she gave me the results from the first exam, and texted me the results (with annoying suspense) as we went to the hospital for the embo, telling me I'd passed the second exam, and the course, and gotten really good marks on the subjects. A bit annoying my overall result doesn't reflect that, as you just get a pass or fail! But I was secretly a bit smug knowing I'd passed alongside 2 others on our first attempt, whilst the others failed, and blamed the tutor. Truth was, it was a 4hr class once a week, you kind of had to put a bit of effort in the home study. I'd even passed with two less weeks of revision and study than the others did, due to the embolisation and then John and I going on a camping holiday (apparently I like to pack all the adventure into one week).<br />
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But I still don't have a job. I got an interview before I'd even passed my course - from advice from my tutor, as I'd likely to have passed by the time a job actually started. The interview was 'casual' and they mostly just wanted to ask about the experience in the workplace I had, which is shit and very little. They also said the course I'd just done, my AAT level 2 in bookkeeping, was useless for this AAT accounting apprenticeship (no it wasn't, but that really knocked me). After not hearing from them for ages, the recruiter said they were impressed with me and I was still in the running. A couple of weeks later, I heard back with requests of what I'd require re: adjustments so I could do the job around my deafness. They needed to know this 'before offering me the position' and I got my hopes up. A couple more weeks and I get the rejection email. They went for the fresh out of school with 'relevant A levels' kid, saying my course 'was a good start' and took a jab at my completely irrelevant A levels and uni degree. Its not my fault I didn't know I wanted to work in that sector when I was 15 and choosing A levels. My school didn't even offer those A levels. It was such a kick in the teeth, to use a roundabout, seemingly a bit weird excuse, to not give me the job based on something they told me wasn't an issue during the interview.<br />
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I haven't had an interview since. I had one recruiter email me for a local accountant, who wasn't interested in my qualifications as 'full training and qualifications are included in the job study package' (read: its a beginners apprenticeship). What was weird was that he wanted me to have lots of experience in the role. I have some. Not much, but I have a friend who is an accountant, and also the boss of the charity shop I've been volunteering in. She lets me do accounting related tasks in the shop and lets me assist her when she does some freelance accounting work. She's the only person who's offered me the chance to get some experience. Because I had limited experience, the recruiter never replied again. Bit rude. And really odd - you probably wouldn't have a massive wealth of experience in accounting without some qualifications, but as he said they weren't necessary, it makes me wonder what he was looking for. Is that the loop I'm stuck in forever? To never get an entry level job because I don't have experience, yet no one will offer me some?<br />
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I wasn't even jumping for joy at the idea of an apprenticeship to be honest. £3.50 an hour for the first year and you're expected to be able to do the 40hrs a week. Not really going to manage that and £3.50ph working part time, with bills and fuel and a wedding to save for? Not happening. I've applied for other jobs I'm now qualified for with my level 2, but even when the job says experience isn't necessary, of course I'm going to be looked over when someone with loads of experience applies. The odd suck. I've even been to the job centre and a local job fair as well as regularly applying for anything in a 30 mile radius. Still came out with nothing.<br />
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People tell me to work in a shop. I'd rather not. I know those who work in shops, and they're forever picking up germs off people who do their shopping even while ill. I don't need help picking up germs as it is. Plus with the hearing issues, I've always got to ask someone else to help if someone speaks to me as I never hear them the first (or fifth) time. Then when you take away other things, like jobs involving anything hearing related (i.e. phones, receptionists etc) and whatever a 5'1 weak short arse can't do (no stacking shelves for me) I'm limited. Thats why I did the course, to try and be able to better myself and get a good job with a future and good prospects that also works around having CF. And even though I spent months doing the bloody thing, working hard and apparently being left out by the other people on the course, it's still got me sodding nowhere.<br />
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My ports fucked too. Its so slow. Those infusion bubbles used to take 30 mins (it even says it takes that long on the sticker). They now take about 1hr 15. It came out of nowhere. Over the last couple of years it slowed to 45 mins but I always put that down to maybe not taking them out of the fridge early enough. But now, syringes are so stiff, the 60ml ceft syringe (filled to 30ml) takes about 20 minutes and hurts my hand. Even the 10ml syringes are stupidly slow. We've tried a special strong heparin that dissolves stuff in the line, to no effect. I have a linogram on the 11th, to hopefully find out if theres a reason, and if the port is salvageable. It's not broken, but its taking so long, and getting so stupid, that I can't just leave it like that until it does cark it. Either way, it better just behave until after the wedding! I can handle a course or two with it playing silly beggars.<br />
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One thing I'm looking forward to this year: Getting married! 3 1/2 months to go, a handful of things left to sort, and hopefully a lovely honeymoon afterwards! Maybe to make the year easier on myself, I should just aim to make sure I turn up on the right day, and not a week early as I've done with parties in the past...Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com1tag:blogger.com,1999:blog-9067658376374442747.post-81236614587081237862017-10-10T23:35:00.000+01:002017-10-10T23:35:32.325+01:00World mental heath daySo today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the year. (Speaking of days of the year, is every day assigned to something? Last week was National boyfriend appreciation day, I'm sure it was sibling or twin appreciation day not long ago, and I'm forever seeing an image pop up on facebook repeatedly through the year saying next week its short girl appreciation day)<br />
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So many people are affected by mental health. CF seems to lend itself to throwing us at the mercy of mental issues too, cos everything else wasn't enough, was it?! I know quite a few people on antidepressants because they've had the harsh reality of CF thrown at them, sometimes suddenly, sometimes at a young age, sometimes it creeps up very slowly. However it was, things can add up until you have to speak to someone and sometimes the result is to go on antidepressants. They're not for everyone, but for some, they work.<br />
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Its not just depression people with CF suffer from. Some have eating disorders or body dysmorphia (not surprising when you spend your entire life underweight, seeing yourself as a healthy weight can be a big adjustment) and others anxiety. Which leads me to my point. Something close friends and family know about, but I don't think I've touched on it much here - not hard considering how much I neglect this blog!<br />
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I used to think that I was fine, mentally. I knew the reality of CF, I lost friends to CF, but never noticed that it affected me too much to the point where I had to ask for help. Randomly, two years ago, I started to worry excessively. I don't know what triggered it, as I think I generally worry anyway, but it got worse after this. John went to a midnight screening of the new Star Wars movie, and left me a text that I'd see when I woke up to say he went - he couldn't decide before I went to sleep as it was a 3am screening and wondered if it was too late/early in the morning.<br />
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I woke up about 6am, bizarre for me, but I was starving. I immediately noticed John wasn't there, saw the text and noticed the time. I tried to work out how long the film was, remembered when it started and accounted for previews and the 30 minute drive back home. I made myself toast and couldn't eat it, I was worrying like mad cos it felt like it had been a long time and he wasn't back, and hadn't replied to my text (turns out a, it hadn't been long in the time that I'd sent the text and b, he was driving at the time). I sat on the stairs and waited, and sent another text. He came home after about an hour or two after I woke up, and I immediately got angry and then utterly distraught crying about how I didn't know where he was and he took so long to get home - turns out his friend needed to go to asda and took ages which explained why it took so long for them to get home. He didn't think to text when the movie ended as he thought he'd be home before I woke up.<br />
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I got worse after that, worrying if he was late home from work - as he walks home - and I'd start thinking all sorts had happened. I eventually asked a CF nurse if it was normal to worry like that, and she brought me one of those annoying depression test sheets. I scored high enough that the nurse had a chat with me and asked if I wanted to see the CF psychologist.<br />
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I saw her every few weeks for months, I'm not sure if her CBT helped or not, because I don't think we seemed to even cover much. It was mostly just stuff like telling yourself to check the time between sending a text and worrying, and being logical rather than immediately jumping to the worst possible outcome. However, upon describing pretty much two identical situations at the beginning and end of my sessions with her, she told me the first time, that my reaction wasn't logical and that I needed to stop thinking that way. The second time, she said 'oh we all worry a bit like that'. That left me confused.<br />
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Since the hemo in June, and the one off occurrence last month, I find myself worrying a lot about it ever happening again. I imagine its probably common after going through the situation, it was pretty horrific. I'd be amazed at anyone who can cough up pure bright red blood for two whole days and just walk off, not bothered at all. I worry if I cough a lot (helpful when you have a lung disease and cough all day, especially when you need IVs - which I'm getting tomorrow) I worry if I lift something heavier than normal, I worry if I push myself a bit further with exercise. Every time I cough crap up I have to make sure there isn't a speck of blood in it. I barely let myself cough for about a week or two when I came home in June, not helped with the fact that I coughed up old blood for about a week or two after. And after the one off last month, I worried constantly even though there was no need. I've tried telling myself, "you've had a massive coughing fit every day and you're fine, stop worrying. You did exercise two days ago and are still fine. You did lung function and nothing happened, thats good." But I still worry. I think I need to ask to see the psychologist again, because when you worry out of nowhere, it takes over your life.<br />
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We went to the cinema the other week, and the thought kept coming across my mind, mid movie. I couldn't enjoy an entire frigging movie without the stupid anxiety just poking its beak in. So if seeing the psychologist helps, then I'm all for it.<br />
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I wonder if life would be easier if I knew what caused the hemo, but none of us do. It happened in the middle of the night so must have been delayed from something, although I do know I had a busy day that day and maybe over did it, coupled with it being warm, hay fever, and a dry cough that somehow feels so much worse than a chesty one.<br />
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Although if I did know the cause I'd never let myself do that again and maybe that's not any better.Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-24619829050590999152017-09-17T11:22:00.001+01:002017-09-22T00:14:41.107+01:00One of those thingsHemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with shit lungs. I won't pretend to be an expert on the subject, I hardly am. What I am, is a massive wuss.<br />
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Those people who go 'Oh you're so brave!' when they hear of things you go through with CF, or claim 'I could never cope with that', the thing is, when a procedure, or illness, or treatment is presented to you, it's often not a choice. You don't get to go 'Actually, I'd rather not'.<br />
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This brings me back to hemos. Coughing up blood is petrifying. It never used to happen to me much. Maybe once every couple of years. Before this year I'd hedge a good bet it had probably happened only enough times to count on one hand, a couple of those occurrences being pure blood, more often, just bloody streaked sputum (lush, yes). Every single time, it only happened once. Then June happened.<br />
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We've already gone through this in the previous post, so I wont repeat myself (I'm trying to break a habit of a lifetime!) but that was the first time hemos had repeatedly continued, and it did for 42 hours, almost like my lungs (or my vessels?) were trying to prove a point. I had the embolisation the following month as it was simply too much blood and too prolonged to leave (I've since seen my CT scan and the responsible vessel was fairly big, as was what looked like a pool of blood around it!). That went off without a hitch and i got my wish to be knocked out. It was quite a hectic week beforehand, as I had an anaesthetist appointment so they could get all the tests and pre op info from me, as well as needing to start IVs as soon as the anaesthetist agreed on a date and also revising for my last exam of my bookkeeping course - which I ended up taking the morning of my embo.<br />
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I limped for 2 weeks after and my leg was sore at times, but its amazing to think they could go through a vein (in your crotch, another reason why I was glad I was asleep!) and find the vessel, and sort of glue it shut.<br />
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I was fine immediately after, even with the anaesthetic. It made me a bit slow and drowsy for an hour or two after, but once I'd had a drink and even enjoyed a hospital sandwich, I was fine. Its strange as my tutor insisted I had the exam before my op, saying I couldn't have it a few days after due to anaesthetic staying in your system for a week.<br />
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On Tuesday night this week, I was reading facebook and read someone's post in a CF group about hemos. It reminded me of my own, and I hate thinking about it. Honestly it seems fairly surreal, to go from coughing up not exactly small amounts of bright red blood, to going back to your normal life. I coughed, and panicked. I felt a familiar gurgle. I had a tiny hemo - not even enough to shout about, but it was watered down blood. The fact that its the first time since the big one though, made me nearly shit myself in fear, I don't want to go through that again.<br />
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Thankfully I have tranexamic acid in the house now, and obviously know all the cold water, no physio or nebs tips too. John had to calm me down though, as I couldn't stop shaking. I woke up every hour, worrying. I also emailed my dr in the middle of the night who replied at 8am to say the usual 'keep calm, take the tranexamic acid and if it happens again, come straight in'.<br />
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It hasn't happened since *bangs every piece of wood in the house* but its so horrible. It never used to even phase me. I knew it was something that could happen, but never really thought it would get worse than a one off. Although last year, two friends died from major hemos, and when I have one, now thats all I can think of, even though I have a handful of friends who have frequent hemos, and are all fine, despite it being a pain in the arse. Personally I'd rather be in the club of 'It happened once, I had the embo, and I've never had one again'.<br />
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Like I said, it never used to happen much, then this year its been maybe 4 or 5 times, all only once (obviously excepting June). We don't know why I've had more frequent hemos this year, but i have been on a medical trial since Dec, and the patient information said to mention it to your study nurse if you were to ever cough up blood. Now I don't think it would say that if it wasn't a possible side effect? My dr isn't sure either way, but I've since come off the trial, as he doesn't think it's helped me overall. I was only 8 weeks from finishing anyway so it doesn't make a massive amount of difference. I also have suspected gallstones (this is possibly what caused me a lot of pain last year, resulting in suspected bad reflux, taking gaviscon and proceeding down an avenue of hell for 6 weeks) and I have a CT scan on Tuesday to see if they've grown, as I've had pain since mid august in my stomach. No one in clinic could think of what it is based on my description, until my dr pulled up last years ultrasound that showed tiny gallstones. So the CT is to see if they've grown.<br />
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Joy.Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-67240972629964122412017-06-24T15:07:00.002+01:002017-06-24T15:46:09.148+01:00My annual ridiculous hospital adventure<div class="separator" style="clear: both; text-align: center;">
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I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this time too! This is a long one, but it felt 100x longer living through it!<br />
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Sunday, about 3am, I woke up with a gurgling feeling and what I thought was normal, disgusting but run of the mill sputum in my throat. I did think it felt warmer than it usually is though... went to the bathroom and saw it was blood. Bright red blood. Horrifying. It came up a few more times too and i remembered the advice from friends about cold water and ice (as well as no physio, nebs or inhalers for 24 hours), and popped to the kitchen to get some. After I drank it I fell back to sleep... to wake up at 7am and for it to happen again.<br />
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Highly unimpressed at my lungs and freaking out a smidge, i went to get more ice. The cat just looked at me odd as i sat on the bench crunching at ice cubes. But it didn't help and it happened again at 9am. Its hard to know what to do in these situations. Its not normal for me - at the most I've only ever coughed up a small amount, although more often (in these already rare occasions) its just blood streaked sputum. Those instances aren't usually much to worry about - with all the coughing we do and the repeated infections, its easy to cause small tears or scratch your throat and bleed a bit. But that doesn't cause repeated haemoptysis. This is more likely a burst blood vessel.<br />
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I kept myself cool, with a fan on me, as well as continuing at the ice (and was running out quite quickly at this rate!) and it seemed to be okay. We had a planned a picnic with John's family at the Wallington National Trust. We went and things were fine, sat in the shade and ate loads of sausage rolls and grapes. Decided to go for a short walk towards the play park for John's niece, and half way there, yep, gurgle. I couldn't not spit it out so aimed for some grass and was shitting it when it was still fresh blood. We'd already called the CF ward at this point, a few hours ago to see what they suggested after 3 hemos. They didn't suggest much! The ward was full, they asked the on call doctor (who apparently said nothing) and then just said i should go to A&E if i needed to come in. I found that odd as in the past they've told me to go to emergency admissions and phoned ahead so they knew I was coming. EAU is the place you go after A&E if they have to find a bed for you anyway.<br />
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So yes, sadly I had to go a A&E! (not before chucking up my picnic though, the coughing and the fact that i was terrified made my food sit badly in my tummy and it came up sharpish). We went to my normal hospital, even though theres a "super hospital" that was closer. I needed to be in the same hospital as my team, and being at a hospital half an hour away from it wasn't going to do me any favours.<br />
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A&E was shit. They sort of, couldn't have cared less, even though i had a literal bowl of blood covered with tissues on my lap while i sat pathetically in the wheelchair. It was quite quiet too. I was in triage quite quick, but went back to the waiting room and waited nearly 1 1/2 - 2 hours. Not to sound like a rank pulling bitch, but people with broken ankles were going in before me, after coming in after me and having already been through xray, meanwhile my lungs had been actively bleeding most of the journey there.<br />
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I eventually went through to a small clinic-esque type room. And waited even longer. After maybe 30 mins or longer I saw my doctor and she just ordered bloods and an xray. That came back clear and there were no odd sounds when she listened to my chest (I can't work out if I'm a jammy bitch or they all have defective stethoscopes as no one can generally hear anything in my lungs). My bloods eventually came back to a CRP of 19, which also meant that infection was unlikely the cause (however CRP can be a few days delayed. Id only finished ivs about 3 weeks before though).<br />
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Talk of a 'lung scan' came up as well as a bronch, I shot that one down as a bad idea (as did some CF friends I was chatting to online) and also told them that in CF treatment at least, the normal way to proceed is tranexamic acid. This was met with, no we need to know where it coming from before we stop it. That one didn't sit well for me, I didn't know how much blood I'd lost by then but i didn't like the idea of it continuing, then shoving a camera down and potentially aggravating it.<br />
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I didn't do anything else there. I was sent to the assessment suite, which turned out to be another name for EAU. Joy. As if i havent spent almost every admission without at least a 24hr pit stop there. When you have cf, its not easy to be tossed around on wards with doctors and nurses barely knowing the basics on CF, as they may find things about your treatment regime or tablets you have or require, a bit out of the ordinary. Their refusal to prescribe tranexamic acid, or do anything else, was a prime example.<br />
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I get stressed in hospital when i have different doctors, and I'm sure you can see why!<br />
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Sunday night/ monday very early am, I emailed my consultant as i wasn't sure how fast word travels in hospitals when your patients arent on their usual wards. He sent me a reply back around 8am - before his shift had even started - saying to stay calm, not to let anyone do a bronch and he would prescribe the tranexamic acid as soon as he was in, and see me after clinic. And he did, as 3 doctors came in an hour later, and were talking about prescribing it. One had a laptop with her, and saw that the request was already sent. My team were impressed that I'd emailed and that it was a really good idea as it would have taken a lot longer for them to find out I was in, and even longer to get the treatment sorted.<br />
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I didn't do much in between seeing these doctors except start hacking up more blood again. It never gets easier or less scary. The stress of knowing exactly what treatment I needed and the fact that no one would give it to me was even more stressful. Add that onto a bad nights sleep from anxiety from the whole thing, a fairly unpleasant hospital bed (which I'm still suffering for!) and the fact that I couldn't for the life of me find my light switch. I was pretty hungry too. No one bothers to find out if you've eaten when you're bouncing between wards.<br />
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Monday was fairly uneventful. I had my room door open for a fairly obvious reason, and literally mid coughing up blood, a HCA asked if she could shut my door. I was alone in my room, and she actually just wanted to shut me in there alone, presumably because it was annoying her? I told her (between mouthfuls of blood) its open for a reason and she gave me a shitty look. I should have thrown my bowl at her. My consultant came around lunch time and saw my bowl, immediately said that it was too much, which I knew, but hearing it from your doctor is another thing. He also mentioned how if it wasn't stopping, embolisation would be the way to go. I was hoping not to hear that, or not hear it so soon, but at the same time I did expect it to be a suggested option of treatment. I know vaguely what it involves and it didn't really help keep me calm! He also said I needed a CT scan, and I actually got it within the hour of him saying that.<br />
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I'm impressed I was able to lie flat and still for 10 minutes, even with the ever pleasant CT dye which makes you feel warm and like you've pissed yourself, but the changing colours on the inside of the scanner were quite nice to watch so it wasn't an ordeal or anything. He also got the cannula in on the first go (although I had to tell him twice he was standing at the wrong arm if he wanted a decent vein. Why do they always go for the left?) I also got some vitamin K through the cannula when I was back on the ward as that helps blood to clot too. That sufficiently blocked the poor sod before she even got to flush it, but they left it in anyway.<br />
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When he came back around to see me that evening, he said the CT showed a vessel in the upper right lobe that looked bigger than normal. Annoyingly I don't have any previous CTs to compare to. But that would be the likely culprit which would be concise with me feeling the gurgle high up, so thats where they'd at least start with if I needed the embolisation, and if the blood still didn't stop soon, I'd get it before I went home. They were looking for a bed for me and found a cubicle on my usual ward 52, but several hours later i was still on EAU, and my bed on 52 vanished and apparently moved to 51. I did get moved up around 9pm and hemo'd all the way up while my porter probably tried to look anywhere except down to my bowl. But thankfully that was the last one. I lost count how many times it happened. Sometimes it was up to 7 hours between, and others 30 minutes. My time on 51 was nice and boring, a lovely nurse brought me a fan and I had typically disgusting food. I had to be clear of hemos for 24 hours before going home which meant tuesday at 9pm, but obviously no one leaves that late, and I had things to be sorted on wednesday - I had to do physio, nebs and inhalers whilst being watched to make sure it didn't start again, and had to wait a shocking amount of time for one box of tablets.<br />
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Thankfully Ive been home since, I still get scared when I cough hard, and I'm still coughing up streaky crap but its old blood that was to be expected - with the amount I lost theres probably several old puddles of the stuff all over my poor lungs. I'm likely to need an embolisation eventually, probably to make sure it doesn't happen again, as for me to hemo so badly, and for so long, given it never happens in the first place, it was very strange.<br />
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We never knew a direct cause either, but its usually guess work unless you're actively rampant with infection. We narrowed it down to the heat, the hayfever causing my cough to be dry and scratchy, and possibly left over infection from my ivs.<br />
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Personally, I'd not recommend adding constant haemoptysis to your hobbies. Its vile.<br />
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And some photos!<br />
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The picnic that was short lived! </div>
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Poppy! She was melting on the hot days. Literally into the sofa</div>
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Me, when my lungs aren't acting up! I've given myself the week off any exercise</div>
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My tea on monday... Which didn't get eaten. Funny that. </div>
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Yes I'm now one of those people who spam you with pet photos</div>
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My amazing view...</div>
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com1tag:blogger.com,1999:blog-9067658376374442747.post-696609419028220642017-05-26T19:20:00.001+01:002017-05-26T19:20:36.593+01:00Clumsy adventures You'd think most of us with CF would have already had our fair share of hospitals, and would generally avoid the place like the plague outside of check ups or admissions.<br />
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I wish i could say the same! I'm very clumsy but this one was so drawn out.<br />
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I damaged my shoulder some time back in November. I'm fairly sure it was when i went rock climbing/bouldering, and possibly added onto going to the gym the next day. Either way, what followed was a ridiculous 6 months of pain, which has thankfully been resolved. But I don't blog enough so I'm telling the story anyway!<br />
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After a couple of months of pain, I went to the GP, to be told it hadn't been long enough for them to do anything - it was suspected that i had a torn rotator cuff due to the fact my arm hurt if i raised it above my shoulder level. I'd also asked my physio at hospital (although past experience has told me not to bother, they're mostly just chest physios, and therefore haven't treated anything else for a long time and their knowledge can be out dated or remembered incorrectly) but she just gave me an exercise that put me in mind of the 'stroke the furry wall' segment in "Get him to the Greek".<br />
This gradually healed slowly. I was still going to the gym but avoiding too much shoulder stuff. In hindsight i do wonder if carrying on at the gym wasn't a good idea, but I didn't want to stop going entirely. It can be difficult to get into a grove with going to the gym and keeping it up, but SO easy to just sack it all off and stop going. While they also bleed you dry via your bank account.<br />
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Fast forward to about 2 months ago, I woke up to insane pain in my shoulder. I thought this was possibly due to the fact that I'd woken up sleeping on my side - something my physio had said was inadvisable in terms of healing, along with anything else that would bare weight on my shoulders, but apparently my subconscious doesn't listen, so there wasn't much i could do if I rolled over in my sleep. This had happened a few times and usually the pain would go away after a few hours. This time, it got worse. I had about an inch movement in my shoulder before i was in pain, enough that it wasn't bearable. It got to the point where even lifting my arms slightly to type on the laptop really hurt! I made a GP appointment (somehow finding one available in 3 days, even though a 2 week wait is normal for my GP) and waited.<br />
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I went to the gp (annoyingly, she was kind of in a rush even though the waiting room was empty and it was evening) and she agreed it was a torn rotator cuff and I could benefit from a steroid injection. This is where it gets silly though - even though my name on the screen comes with a side note that I'm deaf and I lipread, this gp was talking very quietly, turning away and such. She rang someone, and told me to 'go over there, I hope it helps' and ushered me out the door. I didn't know where 'there' was - was I meant to make another appointment? Was I meant to go somewhere in the local hospital attached to the gp surgery? The receptionist didn't know where I was sent to and I wondered if another appointment was what she meant? Ah, no appointments for 14 days. Really? i can't move my arm! A bit of digging and appointment was found... in 13 days. Helpful. A bit of casual chat about her cochlea implant (as you do) and she suggested that i go to urgent care - my local a&e that was downgraded in favour of a super hospital (best hope i don't have any time sensitive emergencies as said super hospital is 45 minutes away!)<br />
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So I went to urgent care to ask if they give steroid injections for ruined shoulders. There was a lot of back of forth, a student nurse who looked like she wanted to cry when given my list of medications to copy down, and a doctor with an accent that i couldn't understand very well. This is why i dont go on my own to places! I have no idea what i agree to half the time. I had an xray and was plonked in a sling. And an appointment made for Trauma clinic at the hospital the next day.<br />
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So trauma clinic i went! With my mum in tow so i didn't end up agreeing to an arm amputation which at this point was feeling more logical as my arm was so useless. And i like to be dramatic. This resulted in being told that having my arm in a sling was the worst idea - it would just make my arm stiff and more sore in the long run. They wanted an MRI which i think is normal for this sort of injury, but upon seeing my port in the corner of the xray, the doctor rang the MRI people who wouldn't touch me with a barge pole. Its titanium! i told them this, and that its fine in an MRI but they were having none of it. So I had to wait for an appointment to come through for an ultrasound. It did... made for 2 months after I'd originally gone to trauma clinic.<br />
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I also got a slight snort out of the xray summary mentioning my lung scarring visible in the top corner, and that it was worth looking into.<br />
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I then found out in between trauma and the ultrasound appointment, the GP had told me to go across the hall to another GP who specialises in muscles and bones etc. He most likely would have given me the injection there and then. Typical.<br />
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The appointment came around and was last Friday. It was for an ultrasound to see if they could see anything, and a possible injection, which i did need. It hurt! Both my mum and John's mum have had this done before and they told me it didn't hurt - they both admitted it was cause they didn't want to get me wound up before i even got there! Ironically, they couldn't see anything on the scan, not a torn rotator cuff or something burtitis which is what mr Trauma thought, due to my age, and nothing else (he chose to ignore my 8 years on steroids, even though they both thin your bones and can basically eat away your muscle). Even though they couldn't see anything, we agreed the injection was worth a punt as I was fairly limited and 6 months of pain is just getting silly. They said it may not work... thankfully it has! My arm stiffened and hurt like hell again for 2 or 3 days (as normal) then healed wonderfully. But I dont fancy another needle into a shoulder muscle anytime soon. Even with local anaesthetic and crushing John's hand, it really hurt!<br />
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Baring in mind, all of this was seriously irritating when you account for the fact I'm only 5'1, and need to reach for a lot of stuff!Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-59956048833500828082017-01-21T13:34:00.000+00:002017-01-25T17:11:19.999+00:00Disability equality isn't always equalThis country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences but I'm a mere drop in the ocean of those who basically get kicked in the teeth, even from services that are actually meant to help.<br />
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Case in point, my most recent experience which was the cause to write this post.<br />
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The parking on my street is a nightmare. It's so hit and miss, and no one cares. I've lived here for a year and a half and maybe half the time, I get parked on my own side of the street, and if I'm lucky (or it's well timed) I can park outside my own door. All the other times, I'm parked anywhere from on the other side of the road, to round the corner and down the hill. A lot of this is due to the fact my neighbours managed to all miss the parking portion of their driving lessons and forget any parking etiquette; they'll usually park as close to outside their own door as possible, ignoring where the other cars are parked. They sometimes block me in too. I should point out theres no markings on this road, which is probably one of the main causes for the shitty parking. But this bad parking means that people will often take up two spaces. And this isn't just a bad assumption of where others may park, they directly ignore where the cars are, refuse to line up and park bang slap in the middle of where two cars would comfortably fit. They're like those dickheads who park over two spaces in supermarkets cos they don't want their car dinged.<br />
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It might not seem much to you, but to me, when I'm tired, when I've been to the gym (which is considered essential exercise and physio, before you launch on me) or if there's anything in the car that needs bringing in, its a nightmare. It's just as bad if I'm leaving the house to go to the car. Especially in winter or any cold weather. If I'm going from a warm house to a freezing cold outside, it makes me cough so much I often can't start driving for several minutes. This obviously gets a lot worse when its added with trampling up and down hills to get to the car. I've sometimes actually been parked closer to John's parents house than my own, and they live a 5 minute walk away. I've often left my disabled badge on the dash to hopefully demo that I need the space, I figured it was easier than knocking on everyones door like some sort of Jehovahs Witness, and giving then a lengthy explanation on why I need to park there.<br />
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So I decided to apply for a disabled space marker. These aren't enforced; they're more like a polite request to say I need this space more than you. But I figured it was my best chance of actually being able to park near the door. This process takes 3 months and the form is fairly pathetic. They don't ask for any reasoning why parking is difficult or even ask to show proof of your blue badge (they do when you're approved, but I imagine asking to see it first may avoid any people trying to chance it?)<br />
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The process involves having someone from the council evaluate the road and see if you're too close to a junction or roundabout (this means an automatic no if its not safe, the road also has to be wide enough. These last two points meant I was refused a space outside the flat we previously had). If these are approved, then they will ask your neighbours permission. I am not kidding. They actually ask people who don't know whats wrong with you if they mind having a disabled space painted on the road.<br />
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I'm not sure how many it takes, maybe its a majority vote, maybe it only takes one person, but I was refused my space. All I was told that one of the consultees objected to it. I don't even know if they were told who was applying for it, because if so, surely that would sway their decision if they had a personal dislike for that person? I get on with my neighbours, that I'm aware of. While I hate their parking tactics, I've never banged on their door and told them to move. I've argued with someone on another street who had bonfires monthly to burn garden waste, which resulted in reporting him to the council as I couldn't leave the house when he did this. Luckily he hasn't had any fires since. I say lucky, I mean for him, as he could be fined up to 5 grand. Another neighbour asked me to stop coughing so loudly, and stared at me with a blank face before continuing to tell me, but the coughing is very loud and our houses are terraced, when I told him I had a lung condition so it couldn't be helped.<br />
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I have emailed the lady who I'd previously emailed asking for an eta on the result of the application, asking if the result can be appealed. I also gave some points to why parking is so difficult and how my neighbours have so little disregard, including someone 2 doors down asking me to move my car so a van could park outside this morning. I said yes before I thought - I can be far too polite on the spot would you believe! - but afterwards I thought of how I should have said no, and told him to move his small van and his wife's massive estate car, for once.<br />
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(I'm currently parked across the road and on another street. Go figure).<br />
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Obviously when this letter came through my letter box, I vented my frustration on social media. No one else seems to understand why the neighbours get the final say, and I think thats a very logical reaction. Why am I made to park further and further from my home because someone thought it would get in the way of them having a space? Why do people who don't know my health problems get to decide if I'm able to park close to the door or not?<br />
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It's not just parking that's hard. People stare at you for having a badge if you don't have some sort of obvious physical defect or aid, they glare at you for coughing, they argue at you for sitting somewhere they were about to sit, even though your back is hurting so much you're in tears and literally couldn't move any longer. They get annoyed at you for being deaf, they make things difficult when you mishear them, they think you're rude or being annoying when you ask them to speak clearer.<br />
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You get denied benefits because you 'look healthy', and without knowing your medical history, declare you fit to work, and you get denied a space on the bus because moving a buggy for your wheelchair is too inconvenient, or if you don't openly look disabled, they think you're just lazy (same goes if you don't get up out of a disabled persons seat for another).<br />
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In the past, I've been in a wheelchair and people speak over me, to the person with me, to ask a question I could answer. They grumble or stare in disbelief when I get out of the wheelchair. When people have found out I'm deaf, they stop speaking to me and speak to whomever is with me, and if they don't know I'm deaf but speak in a way I can't hear them (turned away, mumbling etc) they assume I'm rude. I've been spat at for parking in a disabled space and, yelled at while someone demanded to know if I'm actually disabled while they stared at my legs. I've also been told to move out of spaces for another person with a badge.<br />
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I'm so fed up. I'm this close to knocking on all the doors and asking. I have a suspicion on who could have said no, some are so lovely and they're literally the perfect neighbour.<br />
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However, people surprise you.<br />
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<a href="https://www.bloglovin.com/blog/6511849/?claim=rmwhrp55vgb">Follow my blog with Bloglovin</a>Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-81016276612525652172016-11-22T17:45:00.000+00:002016-11-22T17:45:11.482+00:00Bye bye predI can finally wave goodbye to the little bugger that is prednisolone!<br />
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I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.<br />
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Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a collapsed lung - they need to rule that out to be sure.<br />
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I've wanted off pred for ages, although I think its a mixture of hating the evil tablets that leave the most disgusting taste in your mouth if you're not quick enough when you're swallowing them, and also because I don't think they're doing what they should anymore. Pred has horrible side effects, and although its hardly a bad thing that I don't get them anymore, I also don't feel the benefits (I'm so used to side effects off various stuff that when the side effects stop, I can tell the medication has stopped being useful too). The side effects ranged from various stuff like moon face (thankfully I only ever had that when I was on 20/40mg alternate days for over a year), fluid retention, insomnia, constant hunger, mood swings (cheeky shites may comment that there is no difference...), poor bone density, bruising all the time, I could go on! I've also read that it breaks muscle down, and makes all your fat deposits go to areas like your tummy, it basically does the total opposite of what dodgy gym steroids do. Whenever someone would hear I'm on steroids they'd make a hulk like joke - sadly its useless! I think I've definitley noticed that, as I think its a factor in my slower than I'd like improvement in the gym. I can be stuck on the same level for months noticing no improvement on ease or stamina, and I'm sure that's because I'm trying to gain muscle on top of a medication that wants the opposite.<br />
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So I'm stable *knocks on every piece of wood in a 3 mile distance* which means my Dr thinks its perfectly fine for me to come off it, as the original need for it has cleared up and its not really needed for anything else. Plus it'll probably be better for my bones as my last bone scan came out as -1, and for someone who trips and walks into things on a daily basis, thin bones are not on my wish list.<br />
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It took a couple of weeks of taking 5mg and 10mg per day (which evened out as 7.5mg) then 5mg every day for two weeks, before I had a test done to check my cortisone levels. That involved a blood test, an injection of synacthen, another blood test 30 mins after that, then another, an hour after the injection. Thankfully my nurse brought me a proper cup of tea, as the test had to be done first thing in the morning, before I'd taken my steroids. I woke up so early I didn't even bother eating breakfast as the earlier I wake up, the more I cough, and just feel sick instead of wanting my usual bowl of coco pops.<br />
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The test came back fine (obviously) which meant I was actually fine to stop the 5mg a day completely after getting those results! I'm still on steroid inhalers, but I need to stay on those as they help with daily things.<br />
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It's been a very long 7 and a half years or so, but I'm finally freeeee! Out of all my meds, I really hated pred the most, and that seems to be echoed in a lot of other people's views too! However, I'm not adverse to a 5day course of 30mg if it helps whatever the problem is.<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-13797457096772467122016-10-21T18:39:00.000+01:002016-10-21T21:29:57.249+01:00Orlando!A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so long made it so worth it! And we spent every penny we took, which was the intention, I just didn't realise how much stuff would cost over there! Most of it went on food, and a few little souvenirs, but savings are made to be spent on something memorable so we don't regret a thing! This will be a pretty long post though...<br />
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Whilst the holiday itself was amazing, the journey there left something to be desired; After waking up at 3am for a 6am flight, it was delayed by a couple of hours, and once we did finally get on, it didn't leave for another hour and a half. This meant our other 2 flights had to be rearranged as we'd missed them. They sorted this, with a few bumps, and we basically ended up on the same route, just 3 hours behind.<br />
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Our last flight (JFK to orlando), or rather just JFK the airport, was a fucking shambles. When you require special assistance, even if that's just the lend of a wheelchair cos you can't walk the ridiculous distances, they basically push it for you, even if your other half is totally capable. Apparently we needed a taxi to take us to the other terminal as the airport was fucking huge. We waited 30 mins, for the taxi to get here (with a member of staff telling the other 2 couples that John and I were the first to get on as our plane left first), for everyone else to bundle in, the back two seats not be able to fold up into seats, and for the taxi to leave without us. The staff member then pointed us to the air bus... right across the street, and that would take us to the terminal (which it did, in 2 fucking minutes!) She took the wheelchair off us too though. We had to then stand for about 20 minutes through security (as i had no fucking wheelchair!) with unsympathetic staff who didn't care that our flight left 15 minutes. We managed to get into a slightly shorter line, only for some actual shockingly super obese lady, her daughter, and her accompanying special assistance staff member, to shove in front of us, and take decades of time to get her stuff through the scanner. John had pretty much given up any idea of making the last flight, and I walked ahead, out of breath, shins and back hurting from the walking, to get to the gate, which was typically, the furthest away, and once I was there, I may or may not have promptly burst into exhausted, frustrated tears when she said they hadn't shut it yet so we could still get on (they closed it right after we did, though!). That flight was a couple of hours long, we got our transfer (which took over an hour as the driver decided to drop off everyone else first, when our hotel was 20 mins from the airport), and got to the hotel, to be greeted with a massive rush of boiling humid air at 11pm.<br />
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Once checked in and in our hotel room, I shoved my Dnase into the fridge. It's meant to not be in room temp for more than 24 hours and it had been out for 25 due to the delays. I think it still worked well, my chest was a bit more chunky through the week but that may have been the humidity or something.<br />
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After all that wonderful excitement, we started our holiday properly! We had one empty day during the whole time, and in hindsight, it would have been smarter to have set that free day for the first day to sort out the jetlag, and the fact that i felt dizzy from the planes, hungry (and sick from hunger) from having eaten 2 meals since 3am uk time the previous day (getting to the hotel at about 4am uk time the next day), having had about 6 hours sleep in about 48 hours or so, and possibly having taken the wrong creon amount during one of those two meals as i felt bloated and sick, which is how i feel when i don't take enough. Regardless, we started our two days at universal, and they were amazing! We had 2 day, 2 park tickets, with a quick queue ticket which came in part with staying at the on site hotels, and a special Gold pass, from the charity who gave us the park tickets, which allowed us to skip the queues in places where the quick queue didn't work (mainly meant going the long way to the rides which was useful as the wheelchair we had to hire due to the distance I'd have had to walk, as well as the heat, wouldn't always fit round the queue lines very well).<br />
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John went on everything, and i went on anything that didn't give me horrible vertigo (due to my whacked out balance and hearing problems, on top of the fact i already felt sick). I went on one 4D ride and nearly threw up, which was saying something as they're the ones where your chair just moves about while you watch a 3d film. I had to skip most roller coasters (i went on a couple, and quickly found out that barrel rolls and loops do nothing for the vertigo) but i did go on a few mini roller coasters and some that were kind of 4D but not as bad, like gringrotts, spiderman, transformers etc (they were pretty good fun but i'm also a wuss meaning if i didn't have vertigo i wouldn't have been able to go on the huge roller coasters like Rip Ride Rocket and the Hulk anyway)<br />
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We had a list of rides we'd made from looking on the website, which basically skipped the kiddy rides, and I'm really pleased we did everything we aimed to. The quick queue certainly helped though as some rides had really long queues. On rides where we weren't sure if they spun or rolled, john would go on first, and tell me what it was like so i could decide. We also went on the water rides, and because it was about 30+*C, we dried out quick too!<br />
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After those two days, we went to Busch Gardens, Sea World, the Kennedy Space Centre, and Aquatica. I don't have many photos at all, a combo of mostly being on rides (or waiting for john to finish his ride) and having a shit camera. I couldn't take my Nikon D3 due to the weight and its value, so borrowed an old bridge camera, which was blurry, terrible low light, out of focus a fair few times and took 3 seconds to take a photo (meaning i missed a few things i had a second to capture). About 2 thirds of the photos i took were blurry or hard to see due to the bad lighting. A bit annoying when i realised my dad was genuine when he asked if i wanted to take his canon IXUS which takes amazing photos, and its a pocket sized camera too.<br />
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There were a lot of roller coasters in busch gardens and sea world, and john went on most unless they were shut. I went on this insane green roller coaster in busch gardens which was the kind which speeds up as it goes upwards, and I tolerated that one fine considering there was one barrel roll. I'm glad i at least went on a couple as i used to love roller coasters but now they scare the living daylights out of me. I'm scared of heights so any vertical drops have me bricking it just looking at them. There was one insane looking coaster at either sea world or busch gardens, and i was going to go on it until i saw it had a vertical drop, and got myself in such a panic i just sat and watched in horror as john got on and came off a few minutes later grinning like mad.<br />
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We also decided to go to Halloween horror. It cost a lot but it was so worth it. We managed to get another gold pass (which are impossible to get unless you have someone helping) as ours was only good for the two days we were at the park originally, and i think the only reason they gave us it was because we already had one. John over heard three people come in and ask for one while we were at the desk, and they were all turned away. The quick queue for HHN was about $80 per person, per night, and the hotel one didn't count for it. The queues for the horror houses were up to 2 hrs long and there was no way I'd have managed that. We still had the wheelchair but even sitting in it gets uncomfortable, and there was various people smoking all over, as they apparently seemed to think that if it was dark, you didn't have to go in the smoking areas.<br />
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We went to halloween horror three times (its only open certain nights but our ticket was valid for about 21 dates - its expensive but if you're around for that long its pretty damn good value) and there were also several rides open during it, but with much shorter queues. I think John went on the Rip Ride Rockit rollercoaster about 5 or 6 times, and we went on the mummy and the gringrotts ride several times too.<br />
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On our last day, we'd been to Aquatica, but weren't there all day due to the fact that neither of us liked the slides where you didn't have a ring - you felt each join in the tube with your spine and fuck me that hurt something rotten! There was also a thunderstorm coming which meant lots of things had to shut. The same thing happened the previous two days, and the rollercoasters, and various other stuff, will stop if the thunder and lightening is less than 5 or 10 miles away. A lot of the time a massive rainstorm followed which meant most people weren't exactly about to go on a coaster anyway.<br />
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That evening we went for a meal at hard rock cafe. It was pretty pricey but worth it for our last night. We decided to walk back to the hotel rather than take the boat that went back and forth every 10-15 mins, and I simply thought John suggested it cos he didn't fancy waiting. There was a tiny beach on the walk back next to the pool (although that was shut as it was 10pm) and john suggested we stop and sit on the loungers. Again, i thought he was just making sure i wasn't getting too worn out. I was sitting in front of him, admiring the view, and he pulled out a ring and put it in my hand!<br />
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I may have not put two and two together (something in me didn't want to presume as we've always said we'd want to get married but i wasn't expecting anything just yet!) so I turned around and John asked me to marry him :)<br />
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It turned out that when we went to my parents the night before we left (at his suggestion but i thought that was a simple popping over to say hello before we go on holiday kind of thing) he asked my dad for permission which i think is very sweet - of course my dad didn't mind at all as my parents love john and get on with him brilliantly. He told my mam after we'd left, and other than them, the only other people to know were johns parents.<br />
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We've been together 5 years and lived together for over 2 and a half, so people have been asking and asking when he would propose. I'm glad he waited till he wanted to and didn't feel pressure, and now people can finally stop bugging us (but the 'when will the wedding be' questions have only just started!)<br />
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We came home on a bit of a high the next day, with no problems thankfully, although it was weird at first settling back into regular life, and yes, I've already started gathering wedding plans! We don't want to be a 'get engaged and just stay engaged forever' couple as everyone loves a good wedding. Just kind of hoping for a small windfall to pay for it ;)<br />
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Health wise, I'm quite well! I went 4 months between my last ivs before needing them in prep for holiday, and I'm about 6 or 7 weeks out of those and coughing a bit, but i think its the sudden temp change as england seems to think its migrating up towards the north pole.<br />
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More photos if you made it this far! Sorry it was so long!<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-85988080163597316542016-09-03T18:19:00.002+01:002016-09-03T18:19:44.349+01:00Holiday excitement So i turned 25! I feel so old considering I still regularly pass for 15. I know, I always get the 'you'll be grateful when you're older' comments too but they do get boring after a while. Sort of like the 'wow you must rattle' comments when people hear how many tablets you take a day.<br />
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Speaking of tablets, I'm 4 days away from finishing my holiday prep IVs and I've started packing up for holiday (10 days!!!) and even though I don't take a serious amount of stuff (I think I'm probably mid way, i do take plenty but i don't take as much as some of my other CF friends) my suitcase appears to be 3/4 full of meds. I'm only taking a cabin bag and an extra carry on, I get far too worried about putting things in the hold. But what really got me is that when I asked someone on british airways twitter account about possibly having an extra carry on just for meds - and what i got in reply was "oh don't worry, we have quite the generous carry on allowances"- even AFTER she asked me to list everything I'm taking! Which, if you were wondering, goes as follows:<br />
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9 x dnase<br />
9 x saline for neb<br />
eflow (with plug and batteries)<br />
eflow mouthpiece<br />
tobi pod<br />
9x days of orkambi (36 tabs)<br />
3 x pots of creon (I'm so glad i only take around 5-7 for a meal!)<br />
antisickness (taking 9, enough for one a day, as they also help with some reflux)<br />
salt tablets (at least 3 a day, maybe more)<br />
symbicort inhaler<br />
ventolin inhaler<br />
Spirivia inhaler<br />
9 x calogen shots<br />
fluxclox (72 caps. I know, its loads. Blame my doctor)<br />
omeprazole (18 caps)<br />
urso (18 caps)<br />
Vit A+D (18 caps)<br />
Vit E (9 caps)<br />
Vit D3 (1)<br />
pred (18 tabs)<br />
Azithromycin (4 tabs)<br />
<br />
overall: thats 510 or so tablets, 18 neb doses, 9 supplement drinks, a nebuliser with the essential bits and 4 inhalers. For 9 days.<br />
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I'm pretty sure thats all. Oh and by the way I'm also meant to be able to fit everything else! Like toiletries, clothes, my camera, phone charger, sunglasses, all the documents etc. The bright side is that coming back I'll have loads of space! I'm taking everything in the original boxes as that should be easiest, along with a letter from my cons. I'll be putting everything in the dossett box when I'm there, but don't want to travel with them in the box already as a, if it opens then thats just too upsetting to even consider - its bad enough when you spend ages decanting it all, and knock it over on a table in the process of shutting the lid. Also, some airports may not be too happy about it - considering I'll be going through 5 overall (including arrival) just on the way there, 3 of which are in america.<br />
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I promise to put up a long picture-esque post when we're back. I'm hoping to get at least one good one of me and john as that was all the charities asked for in return (you know, the CF charities that give you money specifically for your holiday)<br />
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I really hope the pictures turn out okay too - I wont be taking my fancy pants DSLR as it weighs a tonne and is also very expensive. We do have insurance that covers that but its just too risky for us. So Im taking an unused bridge camera from John's mum, which I've tried a few times and its okay, just so odd not being able to control as much as you can on the D90!<br />
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Hope everyone's had a lovely summer! I actually got a bit of a shock to realise kids were going back to school next week!Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-35448170623434853502016-07-30T11:16:00.002+01:002016-08-02T17:43:38.829+01:00Hit or missI have a hit and miss record of whether or not I get on with medical professionals. When I was 11, I was admitted into hospital, and I vaguely remember having a ward round with my consultants, several other clinic members and what seemed to be every fellow and junior doctor in the hospital (this may not be accurate, I just remember being absolutely surrounded in my little hospital bed). A female fellow was told to give me an examination and I said 'NO! Not her! I don't like her'. This was met with several surprised faces and glances (it still bothers me to this day, as coincidentally, I think she was muslim and I always worry I came off really racist!) The actual fact was, I'd seen this doctor several times in clinic, I'm pretty positive she was particularly bad at blood takes, and she always generally ignored me and spoke to my parents. This wasn't new. But I remember my dad telling me he was irked by her because they were always rang up with sputum or blood results a few days after they'd been taken, and whenever she was the doctor in clinic, no one ever rang us up. It may be a petty reason for an 11yr old to dislike someone, but, i was 11.<br />
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Yesterday I was putting a clinic letter away and decided to read some old letters instead. I found one from this fellow which said things like my hearing loss wasn't due to aminoglycides (er, yes it was) and that I could be particularly difficult in clinic (how would you know? You ignored me the entire time!) I guess my hatred for her wasn't for nothing then if she was bad mouthing me in letters to my GP.<br />
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Another time when I was a teenager (must have been 14 or so as I read this in a diary) I was sitting in a side room to get my port flushed, and the CF nurse suddenly started on me saying that I seemed miserable and grumpy. I just remember feeling really pissed off at that comment as I'd been there all of 5 minutes, barely said anything, hadn't been rude or short with her and she'd made me take my top off to get to my port - I wasn't wearing anything underneath and felt self conscious and awkward, so if she was basing my 'grumpiness' on this, that wasn't fair. You try taking your top off in front of 4 other people, I know they're nurses and parents so they'll not be bothered, but it doesn't change your personal self consciousness feeling. <br />
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One letter I found, considering there wasn't many from paediatrics, this one has pissed me off a HUGE treat. I was about 16 at this point, getting sarky and pissy with doctors who spoke about you to your parents, shoved you in the corner with a games console and discussed your life without you being allowed any input. (This would often end up with things like IVs being scheduled on the one Friday which was a pain in my arse as I wanted to go to a friends house or a party that Friday or Saturday, and once I realised the date clash, they refused to budge even one weekend) Anyhoo, so this letter was to my first consultant in adults, and was about an impending transition clinic. He outlined some basic health (I find it interesting they said I was one of the patients with severe lung disease when I'm actually still pretty decent now nearly 9 years later) and then, decided to say that he didn't think that my hearing issues were because I'm deaf. He said he thought I had a processing issue.<br />
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Now you could argue he may have meant the nerve damage - I don't seem to process noise into actual speech and sounds, it's literally just noise and I need to lipread to understand. However, he followed this up with 'because she's always been strange with everyone in clinic and would probably benefit seeing the psychologist due to this behaviour'<br />
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I read this yesterday and swore loudly. Its been sitting in my file for years and I've never read all these letters cover to cover. But I am fuming at that. This doctor gave me tobramycin which made me deaf - confirmed with rapidly decreasing hearing tests and the diagnosis of aminoglycide hearing loss and damage then confirmed by a very good ENT surgeon. But according to this moron of a doctor, he seemed to think that my hearing wasn't an issue and I had some sort of brain problem, maybe? My 'attitude' (which i was constantly told off about when I was a teenager, cos guess what? I was a fucking teenager) was pretty normal for a stroppy teen, and mostly in clinic, I'd ignore the doctors because they ignored me. I'd get pissed off with plans made about my life without me even being told about them, and they never, ever asked for any input from me, about my life. I'd then get told I'm stroppy or grumpy, but what do you expect? They were never nice, they never really smiled, or made you laugh or praised you when you kept your weight up. Clinics would be long and gruelling and I've always been the type that gets very 'hangry' - starving and very very angry. I found a lot of irony once in my mum asking the dietitian if they could hurry the clinic up because I was getting hungry, and the dietitian, who had just been telling them that I needed to gain weight, said 'oh well we're all a bit hungry aren't we'.<br />
<br />
I don't like the paediatric team and the more I read about my past treatment, I hate them more. I apparently trialled DNASE when I was younger, but didn't feel it made any difference so they stopped it (the one fucking time they asked my opinion and it probably wasn't a very good one!) According to a fellow who summed my notes up for another doctor in a letter, my dad asked them repeatedly to let me try it again and they never did. I started it this year a couple of months ago now, and have felt massively different, my lung function went up a chunk after starting it and my chest feels clearer. I can tell this difference because I pay attention to the numbers now (i didn't when I was a kid) and my chest has gotten worse over time so i can personally tell a difference when a medication works or when I have an infection. As a kid, I don't think I really noticed a difference other than if my cough got bad. I'm now wondering if I had the idea of DNASE explained wrong which is why I didn't feel it helped. Fuck knows why they didn't put me back on it though as it seems almost mandatory that people with CF have it now.<br />
<br />
But basically, I cannot get over that bastard cunt of a doctor saying that basically i have mental or behavioural issues and that's why I could be a little sod. Doctors and nurses who can't understand normal teenage behaviour probably shouldn't be working in paediatrics.<br />
<br />
As far as I know, that doctor has since retired, but I wish I could see him now and show him that this girl with 'processing issues' managed to get through all of school, 2 college courses and a uni degree. I do have hearing problems, and I do need allowances for that, but that is not cause for him to write what he did. I know I shouldn't dwell on it as it doesn't matter now, but I think the basic indignity of someone knowing so little about someone they treated for a decade or longer, shouldn't have written bollocks like that.<br />
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I also wish I could say that things changed in adults, but they didn't. I no longer get along with my original doctor from adults, I don't agree with him on many things (like when he gave me muscle painkillers for constant headaches due to low sats, or 3 years ago when he spent half an hour telling me 'at this rate of decline' i would need a tx in 6 years, when all I wanted was some IVs. My lung function is now higher than it was then. Twat). There was another doctor who I saw only once, but I remember telling him that I couldn't understand him as he was mumbling. He took this as to get out from the desk chair, kneel in front of me, lean forward and speak to me like I was a severely mentally ill person. Me and my dad just stared at him in absolute disgust. I can't remember what else was said but I do remember thinking how easily it would have been to kick him in the face.<br />
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There is one nurse who speaks to me like that in clinic, but thankfully I haven't seen her for a while. She always seems to be doing paperwork in a room rather than seeing patients. There is another who also can't seem to understand I'm deaf despite being told at every appointment for years now. She seems to think I'm a bit special though as she's always asking why my dad/sister/boyfriend aren't with me if I've come alone. Aside from the fact that my dad let me start going on my own from when I was about 19, unless I asked him to go with me, and my sister stopped going with me when I moved out my parents house over 2 years ago.<br />
<br />
There is another CF cons who I don't see, but he doesn't have many CF patients as I'm pretty sure he sees other general resp patients and is often running up to HDU for patients up there, if he's not putting a port in. I was speaking/arguing with a doctor I only saw a handful of times, and I was getting my routine IVs which I always had twice a day (unless its a specific drug which the dosage can't be increased). Anyway she was trying to give me them 3 times a day, and i'd finally gotten used to the 2x a day that clinic usually gave me. This caused her to leave the room, return with this other Cons, and have him read me the riot act on why I need IVs and why they're so important. After about 10 minutes of this, I wasn't paying attention as he was speaking too fast and has a huge moustache and beard that covers too much of his mouth to lipread well. Someone finally pointed out that I wasn't actually refusing IVs (I'd asked for them...) but I wanted them 2x a day instead of the 3x a day that the younger doctor wanted to give me. This was followed with an '...oh' and then a sudden subject change of how school was going. He then wrote 2 pages in my notes saying I was refusing IVs, being rude and argumentative, and eventually agreed to have them.<br />
<br />
Rude.<br />
<br />
I generally get on with most people in adults now though. Up until a new dietitian swanned in late last year after my lovely dietitian retired. Thankfully there's 2, and I get on with the other, but the new one is a pain in my arse, and she should bloody well know it by now. The first time I saw her, I swear, she said the word 'poo' 5 times in the 5 minutes she saw me. That annoyed me as I felt like she was either obsessed with the word or she was talking to a 5 yr old. When I was ill, in and out of hospital with odd gaviscon side effects in Feb, she said that if I 'calmed down' my 120 resting heart rate would be fine and i was imagining the palpitations. She said there was no problem in my losing 5kg in two weeks. She walked in on me throwing up the chocolate roll I'd managed to eat, and saw no problem. She decided to 'help' by bringing me toast that I'd agreed to try. She brought it in stone cold and burnt black, and walked out smiling. I did ask if NG or NJ tube feeding was a temporary suggestion for the fact that i wasn't eating more than 2 or 3 small bites of food per meal. She said 'NO! we won't do that' and promptly walked out the room. When I asked for calogen shots, as no one had given me any supplements the entire time I'd been in, she waved my request off saying 'they're on the ward somewhere' (I'm not allowed to go rutting through cupboards!) and walked away. When the HCA found them the next day, they weren't calogen, which I'd asked for due to a specific high fat content, but something with much lower fat. And they were warm cos they'd been in the cupboard and not the fridge. I'm also really annoyed that no one (especially her, as she is the fucking dietitian!) did anything or even monitored the amount of food I (wasn't) eating. It's surely quite dangerous to leave someone only managing to eat 2, maybe 3 small bites of food per meal and not really give a shit. Especially when its combined with rapidly dropping weight.<br />
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The last time I saw this twatty excuse of a dietitian, I told her that my problems had been due to gaviscon, and she smirked at me and shrugged this off. I then got very angry at her and told her she needed to move her hand from her mouth because, as I'd told her multiple times before, I'm deaf and I lipread. I haven't seen her since - my nice dietitian wasn't in clinic on Wednesday so I told my CF nurse and my cons that I refuse to see this woman who's name I don't know and don't plan on learning. She would have happily watched me starve to death so I won't speak to her. The other dietitian is also happy with this and doesn't mind being the only one to see me, or me not seeing any dietitian if she's not available as my weights now good and the best it's been.<br />
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Maybe I just get shit health professionals as honestly, some of my so called attitude isn't exactly uncalled for!Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-57277710124182222662016-06-29T09:34:00.002+01:002016-10-27T19:10:31.525+01:00You can't please everyoneI am not happy. Last night , before I went to bed, I checked my emails, as you do. I saw I had a comment on my last blog post. I probably should have ignored it, but as I was basically called a hypocrite, I felt the need to clarify a few points. It went as follows...<br />
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"You totally contradicted yourself "in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill".You're well enough to go the gym 3 times a week yet you got money from 2 CF charities to go on holiday hmm maybe pot calling the kettle black comes to mind."<br />
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You absolute moron, you have no idea do you? First, yes, I go to the gym three times a week. This amounts to between 2 1/2 and 3 hours. Show me a job that is 3 hours long that gives me full pay! Seriously! Secondly, I struggle with the gym every time. I openly admit that. I can't keep up with everyone and when something calls for 3 rounds of x amount of reps, I struggle by the second and usually stop by the 3rd. My head is pounding, I'm having a coughing fit and I'm aching all over. More to the point, its a vital part of my CF treatment that I do exercise. I'm fully encouraged to do whatever I can, and if you can get the gym, then brilliant, cos that place has everything you need. (I also really don't pay much for my membership. Given that it went via a gp referral and then its half price on top of that due to being on certain benefits, its £15 a month).<br />
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My comments/rants about those who sit on their arse are directed at a certain type of people with cf. I in no way tar everyone with the same brush. It was directed at those who have amazing lung function (100% or higher meaning their lung function is better than the average healthy person!) who don't have IVs, who don't suffer fatigue and pains, and who CAN do things, but chose not to, using CF as an excuse. These are the ones who say "cf means I can't work" "I can't exercise because I have CF", and my personal favourite "because I have CF I should get ALL the benefits" I don't claim anything I'm not entitled to, and I don't get much, but we manage. Some people with CF think CF equals an automatic entitlement to DLA, for example. Well certainly DLA was originally for the costs that occur with your illness, like extra food, needing extra heating, fuel for constant hospital trips, but again, these people don't need any of that. They literally don't qualify as they aren't considered ill enough, don't struggle walking and don't need help with any of their care.<br />
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I have worked. Ive had three jobs which were all pretty pathetic and short lived. My main reason for stopping looking for work is because my lung function has a habit of dropping up to 25% in a short amount of time when I'm ill, and I really bloody feel it. I started going to the gym, not only to increase my lung function, but also to try and stabilise the sudden drops. It's better than it was (due to exercise which I have to keep up whether I have a job or not... bare in mind I struggle with the energy to attend or keep up with these 3 gym classes in the first place) It dropped 15% in December and then another 5% in January. That was due to infection. Thankfully because I don't get complacent with a sudden drop, I keep the exercise up and my lung function recovers - something I probably wouldn't have the energy to do if I was working. I also have IVs between every 2 weeks and 2 months. This would hugely affect my ability to do many jobs as a lot of employers don't like you to go in with a massive needle in your chest. Not to even mention how messed up IVs make you feel.<br />
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Finally, don't you dare mention that money for the holidays. It has nothing to do with my lung function, and you have no idea about my financial situation. And I'll tell you it isn't always great. My boyfriend works full time and gets paid by the hour. He picks up as much over time as he can. He gets working tax credits because, guess what, we have a low income. I get DLA which mostly goes on food and fuel. We don't get help with council tax and we barely get any housing benefit as it basically gets replaced as the working tax credits. All of that doesn't actually add up to a lot, but we manage to pay all our bills and rent and buy food with it. We also had enough left to put a small amount into saving every month because we're sensible with our money. However, when money times get difficult, the money we've put in will slowly be taken out. It does get replaced, but those months where we were taking the money out doesn't get added to, so the money sort of just stays static in the end. To get the money which was GIVEN to me from those charities, which I applied to with full disclosure I was applying to the other one, I had to show I was on a low income - lower than the basic standard of living that the government says you should live on.<br />
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Also, more to the point, given my limited options for work, finding something I can do, that I'm qualified for, and that is no more than the hours I can work, is pretty damn difficult. My hearing is a huge factor here and had I not become deaf, I expect that I would have a job if I was in the same position with my lungs now. I could have a job sitting at a desk talking on the phone. Something that doesn't involve running around, lifting things, standing for long periods of time, but I wouldn't have to worry about the hearing so that would open a lot more jobs up. Fuck, I can't even get a retail job sitting at the till as they all seem to use headsets and walkie talkies now. Not to mention the fact that I'd never be able to hold a conversation with anyone I don't know. There's also the fact I've been on steroids for about 7 years now, they affect your immune system and I'd probably pick up every cold going, which I can never shake off and always ends up with IVs.<br />
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I am so angry you left that uneducated, passing comment on a blog I doubt you've read before. I should have ignored it, but you saying that I can work, but don't bother, and that I shouldn't have been given any money for a holiday we can't otherwise afford (and probably won't ever again) is horrible.Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com6tag:blogger.com,1999:blog-9067658376374442747.post-39861551855561179102016-06-16T21:01:00.000+01:002016-06-16T21:01:47.644+01:00How long has it been this time? 3 1/2 months isn't bad going in comparison to previous attempts! How odd how I used to update this weekly and now I either can't be bothered or don't really think this is the audience for my thrilling tales of failing to finish my 4th cup of tea of the day as I have the attention span of a gnat or how shit amazon tv and netflix uk is recently. At least for a good old series you could get stuck in.<br />
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I still haven't done much these days. I couldn't even stick with my attempt to re-watch my Scrubs boxset cos it wasn't even that long ago that I finished watching it. I have a shocking amount of boxsets of tv shows sitting in my amazon wish list that just keeps growing as even though more than half the shows have finished (some even before this decade!) they still cost a frigging fortune. (More annoyingly, half of them I want to watch are on Netflix USA but you can't use things to trick your browser anymore cos they can catch you and get you into a fuckload of trouble).<br />
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Anyway. It's mid July, which means, according to my countdown app on the screen of my phone (which certain people think is sad but you get entertained by very little when you're bored shitless) there's 89 days till we go on holiday. I'm not sure if I've mentioned it before, if I have, you get to read about it again cos I'm exceedingly giddy. We're going to universal studios in Florida in September for 8 nights - we've saved up loads, applied to a couple of CF charities (one was a local CF charity that was closing after 10 years so we applied and they sent us a cheque, with a request of a photo in return of us on holiday, the other was the CF holiday fund, who also got some tickets to some parks through their contacts, which has helped the cost hugely). Parents have chipped in too and birthday and christmas money was earmarked for the holiday. It's costing a fortune and it'll probably be something we can only do once, unless we randomly had a huge sum of money fall in front of us. One of the more annoying things in being an adult is how centred around money life can get, and how stressful it is. Especially when one of you can't work.<br />
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In terms of jobs, I've stopped looking for now. I've spent years searching and applying for anything within the hours I can do, that doesn't involve relying on hearing and doesn't look too exhausting, but I've never even gotten past applying. So much for 'if you meet the minimum requirements they're required to give you an interview if you're disabled'. Instead, I do what I can to keep myself busy, I don't have a lot of friends and get cancelled on more than is strictly necessary, to be perfectly honest, other than my boyfriend I seem to spend most time with his family, as they're always around to pop in. Not the average life of a 24 year old. I go to the gym 3 times a week which I think helps my health loads, and that's important. One thing I was worried about if I did have a job was that something would probably suffer - the stuff I do around the house, maybe the job itself, or my health, and none of those things are worth letting slide if you can't do it properly. My health, for the obvious reasons, a job, because whats the point in applying for it if you can't do it, and the stuff I do around the house, cos if I let the place get into a mess it would probably have a massive negative affect on my general mental wellbeing. I find it hard to be comfortable and happy in a place that's messy and falling apart, so I like it tidy.<br />
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Actually in a couple of months I'll be 25 and that's an odd thought! I don't think I'll do anything for it - I didn't last year and my friends didn't actually notice which is nice... but I don't want to plan something for it to go out the window or look forward to it for everyone to cancel or just not turn up. It makes you feel like shit. I think that's one reason why I actually wanted a job - other than it would have been nice to be able to feel like I'm contributing to money for bills and such, it would have been nice to have someone to chat to or even make friends so you have someone you can meet up with outside of work too. Because I had an appalling time at college and I've never had a proper job, the only friends I have are from school, and everyone else is a friend of someone else.<br />
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On the positives, I'm glad I've moved out and I'm living with my boyfriend (2 years ago last Feb and I haven't burnt the house down!), makes me feel somewhat adult! I don't want to be one of those people who are 30, single, living with their parents and sitting on their arse claiming job seekers, or in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill.<br />
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Actually that's something that's been pissing me off a treat - I work hard at the gym, and even if I feel like crap I do what I can. I had a gym class last night and for some reason kept having coughing fits at the slightest movement, rather than after having put work in to warrant it. But a coughing fit doesn't mean I give up and walk out. I'll catch my breath and join in again and do what I can. It irritates me no end when I see those with CF who claim they can't do exercise - yes you can! "But I cough loads and get out of breath" That's the bloody point! It counts as physio, and more importantly, you can get out of breath and it be nothing to do with CF, you're probably unfit as you just insist you can't do anything. The only way to know is if you stick at it and compare yourself later on, and see if you still get out of breath at the same time. If you do, then yeah you can say its cos of CF but at that point all those days/weeks of exercise have probably done your lungs a good benefit already. People who make excuses are starting to really rile me up. They'll throw lung function numbers around like its meant to stop you in your tracks, but the truth is, numbers don't matter. I know people with numbers at opposite ends of a spectrum and matched in terms of exercise tolerance, or the person with lower numbers doing better than the one with the lung function of a perfectly healthy person.<br />
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Right well that's my rant over. But honestly, get off your arse. Your sofa and the dent you're probably making in it will thank you at the very least.<br />
<br />
<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com1tag:blogger.com,1999:blog-9067658376374442747.post-67971111695534221892016-03-04T17:21:00.001+00:002016-03-04T17:21:39.183+00:00I do believe I jinxed myself (again).For anyone who read that last post about the stomach pain I had that had me back and forth to the hospital. I've cracked it now, for the most part. I think it was reflux, at least partly, and I've figured out that endless hunger I had the day before the pain started was actually excess reflux (which would have certainly explained the pain if it was reflux related) but because I've never had it like that before, I had no idea what it was. I've had it since, and an antisickness took care of it, as it empties your stomach and with it, the acid. It's a horrible feeling though; sort of like when you haven't eaten all day and are raving hungry, but also feel sick, and a sort of rumbly worried feeling. Makes it hard to find out the cause.<br />
<br />
So anyway, they'd given me gaviscon for the reflux, to go on top of the omeprazole I take every day. It was probably the easiest thing to give me but i certainly haven't maxed out reflux meds so I don't know why another tablet wasn't offered instead. I figured the high heart rate I was having and the off feeling was simply just the reflux or maybe even orkambi withdrawal, seeing as all of this started just days after coming off a drug I'd been on for 2 1/2 years.<br />
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The next several weeks were horrific. All of a sudden on Saturday a week after coming home from my 2nd admission, my appetite went, and I felt odd. I was tired and my heart was beating faster than my usual resting heart rate was and it was beating so hard it was basically like having constant palpitations - like when you've been running around and you're out of breath and you can feel your heart hammering away for a minute until it settles. Except this never let up. It also make me feel horrifically sick. By Sunday, I still wasn't able to eat more than bites at a time for a meal. I was beyond hungry but couldn't stomach food. Sunday night, we decided to go to hospital. My doctor was off paternity leave the next day and being at home was just making me panic, so i figured if i was admitted, i might see him first thing.<br />
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I had to go through Emergency Admissions Unit as there were no beds on the ward. I hate EAU, because when you have a specific illness, its such a pain in the arse. They're not specialists, they're general doctors and nurses who don't have a clue about CF, so they bring you your creon with your morning meds (when you haven't eaten) and the doctor tells you to breathe in deeper when listening to your chest, not realising you've got half the lung function someone else your age and height normally has. Also, having been on a research trial, no one knew what I was on about when I said 'orkambi' and the junior doctors weren't half faffing on with my boxes of it, despite the fact it says nothing helpful on there. I even had the ultimate annoyance of an F1 leaving a cannula in my arm over night after taking bloods 'in case we need more'. They didn't and I was very pissed off as he left it in my one good vein. That vein doesn't mind being stabbed multiple times, but leaving a cannula in could have fucked it quite nicely. Luckily it didn't but I had a go at anyone who walked into my room to make them take it out or else I would. I had an xray and a quick ECG that night too (my palpitations had calmed down typically but they never seem to show anything which was more infuriating) and I also ended up on O2 at some point during the night.<br />
<br />
I eventually got a bed in the afternoon on my ward and then saw my consultant about 7pm that night (I imagine having been off for a couple of weeks, he had a right workload to return to, hence not seeing him earlier). He had no idea what the problem was, and we were going to talk about it more at my research appointment the next day (bless my research nurse, every time I've been admitted she's come to find me and have a chat and see whats up). So I went along to research, both my nurse and my cons couldn't figure out the problem but also didn't think it was because of orkambi but also had no idea what else it could be.<br />
<br />
In total I spent 6 days in hospital this time. I wasn't eating, in fact, some days seemed to get even worse. Each time I felt a bit better and then got worse again, it was quite petrifying as i had no idea how long it would last or if it would even go away. The only thing we tried was anti anxiety meds one night, which just knocked me out. I was also on IVs but I was due them anyway, which i think may have explained the sats, but i also blame my heart beating bout 30-40 beats faster per minute than it usually does. It was a bit annoying they didn't do anything else. The dietitian didn't help as she said they don't give you temporary NG tubes just cos you haven't eaten for a week (don't mind me, the weights just falling off at an alarming rate but sure i won't give you anything else to bloody help) and her idea of helping was to give me some toast when i said I'd try some, but she came back with something that was stone cold and cremated. The HCAs could make perfect toast so i don't know why this woman decided to crank the toaster up to the max level then give it to me.<br />
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The whole time, staff from clinic were coming up to chat but mostly just to try and get me to agree to go on Orkambi. My doctor initially thought this was me 'going back to how I was' which i debunked, as I've never had a fast heart rate, a complete and utter loss of appetite like I had, nor palpitations that lasted for hours and were so strong you could see my clothes twitching. However, going back on orkambi was their only idea. By Thursday I was exhausted and pissed off. I agreed to go back on it when my doctor came in to drop off my CF holiday fund medical form - which we applied to for some extra money towards Orlando, as its such an expensive, and probably once in a lifetime holiday for us.<br />
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I went back on Orkambi on Friday, and oddly felt better by the evening. Which made me think even harder that it must have been withdrawal. I went home, and after some colossal fuck up with my IV deliveries, settled back to normal. I didn't feel 100% in the slightest, but felt a damn sight better than I had been. About a week later though at the weekend, i started feeling shit again. The palpitations returned, with dizziness this time. I'd still been tired all week and had still felt quite sick so that wasn't new, but it did seem to intensify. Then the following thursday, by the evening I felt like me again. It was quite bizarre, I'd spent the evening organising my craft stuff on my new desk we've put in the conservatory, and everything seemed normal. I was a bit off on Friday and needed a lift to clinic, as I was still too dizzy to drive, and I'd been thinking all thursday and friday morning, with help from my little sister who'd said the day before "Is there anything new you've been taking?"<br />
<br />
I couldn't think of anything new. I was sure there hadn't been. Then i realised the only new thing, that I was still taking, was gaviscon. The palpitations and sickness only started after I'd been given my first lot, the first admission I had. I hadn't taken it for a few days in hospital (I had one 10ml syringe of it a couple of days into the stay) and improved after a few days of not touching the stuff. I had some at home so continued taking it then (which explains why the problems never totally cleared up and then returned in full) and then for some reason i'd not taken any for a few days before the Thursday when I felt better. I looked up the side effects. Under the more rare side effects it included loss of appetite, unusual tiredness and muscle weakness as a sign of low phosphate. Rarer side effects (which are also 'tell your doctor immediately types) included irregular heartbeat, dizziness and trouble breathing.<br />
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Obviously the side effect list was longer but I had all of these. To be fair, my symptoms were vague and could have been anything - I had a GP appt and my cons had said to check my thyroid which turned out to be perfect, but my infection levels were 20 (12 and below is fine) which made me snort when the GP phoned us for me to come in that afternoon to discuss the possible infection. When I explained I'd just finished IVs and have Pseudo in my lungs, she seemed much happier with leaving it thankfully.<br />
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Most people at clinic seemed happy with my theory, or at least happy to send me home to see if I continue to improve. At least at that point I was eating again and my heart rate was going more back to normal, so there wasn't really a need to re-admit me or anything thankfully. I really dislike the dietitian though. I asked why I wasn't given an NG when I wasn't eating and wasn't showing signs of improvement (the only time I ate more than 1-2 bites of a meal was after I'd been discharged) and she just said they 'dont do that'. My weight is still okay - 47.7kg which means I'd lost about 4kg in the last few weeks, but that wasn't enough to get a reaction out of her or for her to stop mumbling and putting her hand over her mouth. I'm seriously going to ask the other dietitian (thankfully theres only 2 on the team) if I can only see her and not little miss mumbles.<br />
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Since clinic last week, I've continued to improve and now I'd say I'm 99% back to normal. I still feel a bit sick if I eat too quick or too many sweets, but i'm more focusing on the fact I can actually eat now! And I can finish a cup of tea too - for some reason I couldn't even stomach tea when I was ill so that made me realise I'd only know i was okay when I could drink it and be fine.<br />
<br />
So 6 weeks of hell, most of it from some ridiculous pink goo, is now behind me. I still get a slight wave of worry when my heart beats faster for no reason, and I have to keep checking that my pulse is normal if i think i can feel palpitations - most of the time its in my head but I had them so constantly for weeks that i got used to feeling them so keep imagining them still there. I had some CF friends keep me virtual company with messages and checking on me. And my immediate family - parents and sisters, my boyfriend and his mum were all lovely and gave me lifts, looked after me etc. I just still feel so jipped off that no other friends really gave a shit. I was genuinely terrified and half wondered if i was either gonna have a heart attack, puke my heart up, or have something horribly wrong with me, and even after 3 admissions, I don't even get a text, or a comment on facebook. All the time I see people complaining they're lonely or they're ill and they have people rush over to help. I feel like the few people I call friends have really let me down and I'm not sure what I did to deserve to be cared about so little. Its a shame as it makes me so bitter. I know people have lives and they get wrapped up in them, but I thought 'hospital admission and mystery symptoms' would be enough to get a small response - even after asking people to visit. Sucks.<br />
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I also have to have a heart tracer done to make sure there's no issue, although that was mostly for the palpitations which have stopped now. It took so long to get the appointment, I have one for my local hospital in mid april, and my cons put a request in for one at that hospital as the list should be shorter, but i'm mostly wondering if its redundant now. I also have my gastroscopy this month, also a bit pointless as the stomach pain went away but we agreed I should have it anyway just in case the pain was caused by something else. What I really need is a 24hr PH test to make sure I'm not aspirating into my lungs, I'm not sure the dietitian was actually listening though, she looked more amused. I think she's new to dealing with CF patients and having them actually know what they need.<br />
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Things I do to keep myself busy after 6am IVs. "rest" doesn't happen in hosp.</div>
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Gahhh</div>
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my new craft room!</div>
Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-7394905832219421782016-01-30T17:24:00.001+00:002016-01-30T17:37:43.030+00:00Longest week ever.<span style="font-family: inherit;">Well. I did say having nothing to write about usually means nothings happening. So guess why I've dusted off my blogging fingers!</span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">Basically, I got admitted for mystery stomach pain that since remains undiagnosed. This may be lengthy as I'm never good at compressing these! </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">On Saturday (23rd) I'd felt sort of vaguely hungry for the afternoon and evening. I was at a friends 25th party so i was mostly eating cake and nibbles etc. I probably could have eaten more but i'd been coughing a bit and i was also cold, and those two things make my tummy flip around a bit and make me feel sick, so i was finding it kind of hard to even eat another mini sausage roll. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">I went to bed still feeling pretty hungry although i was shattered so wasn't really bothered in making anything - i thought I'd even just end up faceplanting cereal i was that tired. The odd hunger pain kept waking me up a lot which made that night quite long, then Sunday morning I woke up feeling the same. I ate quite a bit through the day but i still felt odd. By Sunday night it had turned to pain, and after dosing on and off, i woke up quite scared of how painful this was, so at about 11.30/midnight, i had John phone up the CF ward. I'd wanted to avoid it but i didn't know what else to do. They did the obvious and asked me to come in as they had a bed free. I saw the on call junior doctor on the ward and she basically had no clue what was wrong with me. I told her how I'd just come off Orkambi which she'd never heard of. She also said they'd send me for an xray, I'm used to middle of the night xrays when you've had a late night admission, so i half waited for that while i dosed off and waited to the paracetamol(!) to kick in (it didn't). I got about 4 hours sleep, mostly from being in pain and <span style="font-family: inherit;">panicking. Being told they have no idea whats wrong with you when you're close to agony isn't fucking helpful. </span></span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">So Monday came along. Xray revealed no blockage, and I managed to once again fuck up the "Is there any chance you're pregnant" question by nodding yes. In my defence, they always mumble that, and the xray technician had THE heaviest Scottish accent and didn't seem to be very helpful about it when I said i was deaf. She never once smiled either, she seemed stern (yet young) and strict. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">With the blockage ruled out, the consultant saw me on the ward and basically started guessing. One option was reflux, another was my gallbladder/gallstones. Maybe pancreatitis. A few other things that didn't exactly sound like spa treatments. With reflux at the top of the list, they gave me gaviscon to see if it'd help. Oddly, it did, and the pain let up for the first time since the night before. Seeing as it helped they agreed I'd go home and basically continue to get better there. Especially as I hate sitting around in a hospital bed when theres no need.</span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">I jinxed myself though. By Monday night I was feeling off again. I ate half a meatball from my mozzarella filled meatballs and pasta tea, and when i tried to sleep, my heart rate was going bloody mental. It was going so fast i could feel it just by lying there. I could practically hear it and see my chest pounding. I checked my sats monitor and my heart rate jumped about between 120 and 130bpm. My regular resting heart rate was usually about 80 or 90. I was lying down, (trying not to panic from the pain re surfacing) and not coughing or anything. Stupid thing stayed high all night (constantly waking me up and making me feel really sick) and stayed high most of Tuesday too. We phoned clinic who said to keep an eye on it. Then we phoned again when the pain got worse and they made a clinic appointment for me on Wednesday as I didn't want to go up on the ward that night. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">At clinic on Wednesday the consultant basically straight away said I'd need to come in again then the next day they'd do a gastroscopy (camera down my throat into my tummy). I worked myself up about that plenty over wed and thurs morning, as I'd have to be awake for it. Come Thursday afternoon and the consultant's junior doctor who does rounds with him comes in and says I'm not getting the scope so she had no idea why I'd been nil by mouth since 6am! They sent me for an ultrasound, which i should have had an empty tummy for anyway, but i could have been drinking water (i drink about 4 pints a day as its really good for my chest). The nurses full on thought i was getting it as the cf unit nurse was telling me what happens and that she'd go down with me. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">Even though the ultrasound was done by 3pm, I never saw a consultant or jr doc again that day. The nightshift nurse was surprised I didn't get the scope, then seemed to decide that I'd get it the next day 'probably about 2pm' (which is what she'd said the night before too) and said the nurse from the day shift had said that to her. I tried and failed tea that night, i was gross looking spaghetti Bolognese, which I'd had the night before (and not eaten either). The nightshift nurse once again woke me up at 6am for some poor attempts at eating toast, and then no more food until the scope. Although because of the day before, i said I wouldn't believe it until the camera was halfway down my neck. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">I didn't see anyone all day! just nurses who were doing obs, who were full on expecting me to go for the scope. Annoyingly they never tell the HCAs if you're Nil by mouth so they offer you breakfast and tea and such and you have to say you can't have anything. Seeing as I was told 2pm by the nightshift nurse, i found it a bit odd when 2pm, then 2.30pm passed by. At 3pm I was raging (and 8 1/2 hours starved) and looking for blood. I couldn't find anyone for the life of me so just stood bang slap in the middle of the hallway waiting for someone i recognised - didn't want to accidentally launch myself on someone who i thought was a staff member to find out they were a visitor!</span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">My consultant turned out to be at an outreach clinic, which was bloody convenient. This is the other CF consultant I don't usually see, but my normal one is on paternity leave (how dare he have a life and have kids!) which is what i partly blame for the reason i got ill. I usually need IVs the day after he goes on holiday!</span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">So I eventually saw the consultants Junior Dr. I did apologise after, but that poor lass got both barrels and more. Turned out my ultrasound was clear (why the fuck couldn't the consultant have told me that when i saw him floating about on the ward the evening before is beyond me) and she had no idea who had been giving the order to put me on nil by mouth, yet alone who gave me a time such as 2pm. She was quite confused and I'm not sure if those orders are even trackable because for all I know, it was Chinese whispers or someone getting a kick out of telling the nurses, to watch Volcano Megs explode big time both Wednesday and Thursday afternoons. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;"><span style="font-family: inherit;">I was angry to say the least when I was told that I'd not eaten or drank for several hours for no reason at all. I yelled, I swore, I'd already packed my bags so I was literally about to grab them and walk off the ward and not come back. I don't even remember half of what that doctor told me (this is why I bring people to clinic appointments, they say so much that I either forget or it gets mixed up cos of my more than useless hearing). But we did agree that I'd have some food and see how I go (there was a chance that my stomach having been fine for that day and most of the day before was because of no food to cause the issues) and if I was okay then I'd be able to go home, and they'd send me an outpatients appointment for some department - obviously stomach related and it involves some sort of mini pr</span><span style="font-family: inherit;">ocedure but I cant remember for the life of me. I think it may have been the 24hr PH test as she said they like you to come off reflux meds for 4 weeks before hand, but that would be difficult for me as my reflux comes and goes, and theres a risk that I could be silently aspirating into my lungs </span><span style="font-family: "times" , "times new roman" , serif;">with no idea and causing damage. </span></span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">They never did figure it out though. They did seem to think it may have been reflux with possible gallstones. Maybe something totally different. They never did a test that gave them a proper idea. I wouldn't be surprised if it was maybe small enough gallstones that passed through my system, as on Thursday, something down my sides and across my lower tummy was hurting a bit. The most important thing is the pain has gone, and I can eat again. It's fucked my appetite a bit and probably shrunk my tummy, as between Monday and Friday afternoon all I'd eaten was a couple of days of breakfast and a few yogurts, Not to mention that I didn't do much as the pain made it difficult to walk far and I also got very little sleep being on the ward and then waking up at 6am.</span></span><span style="font-family: inherit;"> </span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><br /></span><span style="font-family: inherit;"><span style="font-family: inherit;">I'm pretty angry, not at anyone specific as I don't know who fucked up so badly. It was proba</span>bly miscommunication, or total lack of it. But its just insane to let someone starve themselves for 9 hours, twice, when they're constantly told to eat as much as possible and keep their weight up. I imagine my consultant will have a ball with all of this when he comes back to work (poor sod). If they are sending me to have a 24hr Ph test done, then its something I've needed for a while anyway. I've never had insane stomach pain from reflux, but i do have the burning sensation and i have burnt my tongue in the past from the acid. I'm only on 20mg twice a day of omeprazole though, so i found it funny how the jr dr said thats quite a lot when I know lots of other CFs who take multiple reflux meds and its still not enough. </span></span><br />
<span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">There was a few weird things that week too. Like the student nurse putting the sats finger probe on my ear cos my sats were low - they'd been consistently low all admission, usually between 89 and 93, they're usually 95 when I'm ill! But I never did get put on oxygen. I wasn't asking for it but i did have an impressive headache a few times which came with some of the more lower sats. Usually the nurses just tried a different finger to make sure the number was right, rather than putting it on my ear and getting nothing! (I did ask a nurse and apparently they can put it on your ear if they're not getting a good reading, but i don't think it even fit on my ear properly. There was also a random junior doc who came in my room asking about a med I take once a week. I couldn't think of anything but just as she was leaving I remembered my Vit D3 was once a week. That was apparently what she was on about (she had to repeat herself 3 times as she had a heavy lisp and apparently seemed unable of logic that meant write stuff down instead) and seemed happy with me saying I take it on Sundays, then she fucked off and didn't explain herself. No one else knew why she asked either.</span></span><span style="font-family: inherit;"> </span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">I didn't hear anything from any friends except one which didn't surprise me but it's always shit. My parents and Johns mam visited me as well as John himself almost every day. I don't mean to whine for attention but I didn't think I'd overdone the admissions in my life so far that people are already bored and don't think its important when I go in. It wasn't even my lungs this time, it was mystery stomach pain that left me in agony and exhausted me for days. You'd think that would be enough to text back straight away when your friend says she's in hospital rather than reading the text and waiting 10 bloody hours before replying. The only ones who do care are your CF friends, but they're not really the ones who can say 'okay I'm gonna come visit you later', they can just text you and try and keep you company via your phone. Its shit and I give up with people because I'm fed up of it, I don't really know what it would take for someone to send the first text because so far nothing ever has. Really makes you feel loved(!)</span></span><br />
<span style="font-family: inherit;"><span style="font-family: "trebuchet ms" , sans-serif;"><br /></span><span style="font-family: inherit;">Anyway aside from the crap that I went through and the apparent ability to always be ignored while admitted, I'm good now and able to eat, whenever I like! I'm hoping I blog more this year, at least more than I did last year. Me and John are going to Universal Studios, Florida in September so you can at least expect a giddy post with lots of photos then!</span></span><br />
<span style="font-family: inherit;"><br /></span>Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-3695457076540723962016-01-01T19:21:00.000+00:002016-08-06T14:36:02.716+01:002015 roundup(god it feels weird to say 2015 is over)<br />
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I usually do these on a month by month break down. But frankly I've done absolutely fuck all most months, and to lay it out like that would be depressing (went to the gym, went to the hospital, watched tv, repeat). A handful of amazing things happened. A handful of equally crap things happened. Its been a big mix! So I think I'll dive in...<br />
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I think a main thing that happened was definitely house. I've said before, we went from a 1st floor flat to a house, and everything has changed so much. It's also warmer thanks to the less drafty layout of the house too. Moving has totally changed my general happiness because this place is so nicer than the flat. Also the ability to just cook away when I like because I have ROOM for it! Usually I just make cakes or meringues and then stuff my face as I have no one but John to share with. Their loss.<br />
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I've had quite the usual share of IVs. I'm not sure how many exactly, but my last ones were after a mammoth (for me) 4 months off them, when at some points in the last couple of years (including December 2014) I managed a shocking 2 weeks. I do have to gauge for myself when I need them as my team don't generally do bloods, including infection levels unless you're more ill than usual/having annual review or admitted, but they do test sputum which at least means you know you're getting the right drugs. However this does on occasion make me wonder how many times in the past I've had pointless IVs - where my CRP is low, but some other mystery is causing the cough. I'm looking into nasal rinses at my next appointment - I think post nasal drip is becoming quite a fuck off issue for one of the reasons why I cough so much at night - no matter how long (or short) its been since my IVs.<br />
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Other wise, my lung function seems to have stayed relatively stable and my weight has too which still astounds me. I still get tired easily - I was tired by 10pm new years eve, and was pretty much sitting for most of it (although at a friends house and I did have a drink in my hand, I'm trying not to become a complete old woman just yet)<br />
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I had far too many hospital appointments, not just clinic, but xrays, dexa scan, liver scan, physio, research, dentist, opticians, and ENT, including a cochlea implant assessment, because 'no thanks, I'm not interested and don't want a cochlea implant' means 'yeah please send me for the bloody assessment for an operation that would be faaaaantastic for my lungs'. No doubt this year will have just as many, but hopefully not so many that leave me frustrated and annoyed. And I'm hoping somehow we'll find something that will help my back, especially after the disaster that was acupuncture. I really should be able to stand more than a minute before being in pain so much I have to desperately find somewhere to sit.<br />
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Gym has progressed well for me. I started with 3 general gym sessions a week. I don't have a trainer, I don't have a gym buddy, and I'll admit, I wish I did have someone to go with (or could afford a trainer) as its hard to push yourself every time. I even continue to go while on IVs, cos if theres any time where the gunk needs seriously shifting, its when IVs dehydrate you and everything turns to rock. About mid way into the year I started classes, specifically because my motivation has seriously waned with gym sessions. Even the instructors don't help. They just sit at the desk and drink coffee or do stuff on the computer which looks nothing like work. So I started body pump express. I started with a bar and 2 1.25kg plates on, I've increased to a bar with two 2.5kg plates, and when you increase through the lesson, I can sometimes try and add two 1.25kgs so I've got 7.5 total. Thats a nice increase from 2.5kg! I can't always manage an increase though. I have to stop comparing myself with people who started at the same time (or after) who started with equally low weights and now start with 10kg at the beginning of the lesson. Even the old women can pissing lift more than me.<br />
I also do pilates now, when I manage to get a space in the class, as it books up fast. We have a mix of teachers, probably depending on whoever's free that day, but some are great and some piss me off a treat as I can't hack standing around for 5 minutes between each move while they explain. My aim for this year is to try and attend a full hours body pump class, maybe as well as the express (30 mins) class, as my general gym attendance is still shit. Usually cos it takes me so long to go that I time it badly and go when its busy or full of school kids. Yes I'm coughing, yes I'm fine, and no I don't need to be reminded to have a drink.<br />
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I didn't get anywhere on the job front at all, I've applied to so many. I keep getting unrealistic suggestions from friends, like selling photos as a business or craft things - I'm in craft groups and see people struggle a lot, and they're the ones who's things are perfect. Im happy with my general craftiness but they're not sellable standard and I don't have the money to get things started/continue making things when sales dip. My things are just wonky enough that I'm happy or a friend is happy with it as a gift, but I could never sell as the pressure to finish something perfect enough on time would be huge. Also, I don't think I could manage a business myself - I've watched my boyfriend and his business partner do it and I know the stress is huge. I also can't do more of the basic jobs - anything standing, lifting or speaking to people a lot (like in a shop) as my hearing is so bad. I'm sick of explaining this to people as I look like I'm making excuses, but I struggle to understand a whole conversation from people I've known my entire life. With strangers, I get about 3 words of it. If I was at a checkout and someone asked for a bag or cash back or whatever, Id either not know they've spoken or do the idiot smile and nod thing because I think they've been talking about the weather.<br />
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The trial finishes soon, its a grey area and I'm confused about how things continue after, but then again, I probably should broadcast online what I know so far so you'll get nothing out of me here. I have an eye test coming up as they had one to start too - I presume thats to make sure theres no serious changes compared to the one they did at the start of the trial too. So thats a day with those drops that make you semi blind, what a fun day I'm gonna be having.<br />
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I did go to Harry Potter studios, and met up with Gem which is one of the bigger highlights too! Wonder what we'll do this year as we want to keep it an annual thing (and frankly based on that I see her more than some other useless friends).<br />
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(in trying to find a few photos to sum the year up, I realised there's only about 5 tagged photos of me on my facebook since last years new year photos. There's usually tonnes. How's that for a hermit life?)<br />
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I gained glasses to my annoyance. Because I don't already have enough sitting on my ears. Luckily theyre for driving/watching tv etc rather than everything </div>
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Yay(!)</div>
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One of my many makes! A penguin mosaic tray. </div>
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Obviously loving the gym. So much happiness right there!</div>
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This had to be done! She's a classy girl</div>
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Hopefully this year will have some changes! There's a couple of things happening, including us saving up for a holiday and maybe a trip up to the top end of scotland to visit John's aunt and uncle, a break is always nice to have, and if we're very very lucky, because of how high up they are, we could try and catch a viewing/photo of the northern lights. I know these are impossible to predict more than a day or so ahead so it does come down to luck (and the right conditions) but we can always try!<br />
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Hope everyone has a lovely 2016!<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com2tag:blogger.com,1999:blog-9067658376374442747.post-4114670765542229262015-12-02T18:10:00.000+00:002015-12-02T18:10:44.738+00:00Another belated catch upI haven't written here for a very long time. You could argue thats a good thing - it means nothing to talk about. But thats also a bad thing = NOTHING to talk about. Nothing is interesting in my life. Even the two friends I have that aren't my boyfriend/family or have cf clearly aren't arsed at meeting up or even speaking to me (yep that feels great!). Thankfully though, CF has been boring for me too. I keep saying to myself that I should blog more, but with not really much to say, I think it would almost be a waste of writing. Anyway, I shall update you all on my thrilling life since January, as I'm betting you're all waiting with bated breath for this...<br />
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I've started exercise classes (well, a couple of months ago) So now, along with two (maybe 3 if I'm not too tired) gym sessions during the week, I have a pilates class on Thursday and a Body pump express (meaning its 30 mins instead of an hour) class on Monday. Pilates is interesting. It drags at times, especially when we get the teacher that explains every move for several pissing minutes before getting to it (and standing around doing nothing is obviously glorious for my back - not) but there's also the fact that I'm the youngest one there easily by 30 or 40 years, and that's being kind. There's several things I can't do as well as the older people can which gets a bit frustrating, although they've probably been doing these classes for several years, if not longer. So they have that experience, plus even if they probably have hip or knee replacements etc (which I'm sure some do based on individual customisation to certain exercises) none of them seem to have any restriction on the lung part.<br />
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Body pump is good fun, but it hurts! My knee, for some reason, feels like it's going to snap when i'm putting a lot of weight on it (like squats) but my sister reckons this may be weak tendons (i don't bloody know how! I've been doing this class for a few months now and going to the gym in general since Jan!) So I guess that's a question for the physio next clinic appt. I do stop at moments to catch my breath/cough up a lung and a half, but the gym instructor knows about me so thankfully she doesn't feel the need to rush over and pat me on the back. The other people there don't know exactly why I cough but i think they've overheard me and the instructor chatting so they at least know its a lung condition and I'm not a heavy smoker! One woman did feel the need to come up to me and ask if I had asthma. I don't think she knows what CF is specifically though cos when I said what I have, she just gave the 'ooooh' look that screams 'what the fuck is that?'. The class is mostly people in their 30's I'd guess, but recently 4 older women have joined and annoyingly, they can lift heavier weights than me and have improved quicker too. I struggle to lift a bar with 5kg weights on and I'm staring in disbelief when a woman who has to be at least 60 odd has a bar with 12.5kg on, and increasing. Show off.<br />
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BUT! I think these classes are really helping. The improvement has been gradual, to say that I haven't noticed myself becoming suddenly hulk like, but last clinic appointment, my lung function went up a tidge. It's not gone up in leaps and bounds, but to me, anything is huge, as usually when I'm not on IVs, I either see the same numbers as last time, or a steady decline until my next lot of the drug goodness. I go to clinic on Friday, to start IVs (i've had 3 1/2 months off which is AMAZING to me! And the longest I've gone in about 5 years! At one point I was barely coping with 4 weeks off them) but these IVs are mostly because, again, a cold did it's job and has given me one hell of a junky cough. But then again, I was aiming at IVs before xmas anyway, as last year I got the cold that ends all colds (I went to a bloody wedding and reception while not being able to stop coughing for most of the weekend), and ended up on IVs not just for christmas, but also for new years. What a way to end/start a year!<br />
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In July, John and I moved! I'd been wanting to for a while. I did like our old flat, but the more i thought of it, the more problems I found. The boiler was bust (we went over new years, for 3 days, which was some of the coldest nights of the year, with no working boiler. No heating, no hot water. Grand) and that sodding thing broke multiple times over the year and a bit we lived there. There was damp in the walls, mostly because a section in the side of the roof had come out, but i don't know if that was just one of many issues causing it. The kitchen was fit for a borrower. I had 4 1/4 cupboards to try and fit an entire kitchen in. And the neighbours were annoying - next door smoked like chimneys and had 3 loud children. Now I can't hear, we all know that, but whenever I had people visiting they always commented on the yelling they could hear from next door. The bloke downstairs was lovely but his dog barked something rotten while he was at work all day. The parking was shit for multiple reasons and we were next to a busy road which was extra fun. Next door (other side) was a timber company which periodically liked to burn what I assume was scrap wood, without notice, meaning I was stuck indoors with all windows shut tight unless I wanted to choke on the air. Oh, and it was a first floor flat! Which meant it was a chore to even psych myself up to go do the food shop.<br />
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So we moved to a house! It's 2 minutes from where we used to live, and right round the corner from John's mum and step dad, so we're always popping over and vice versa. I may still be guilty of driving down on occasion though as its a slight slope and at the moment its fucking brassic outside. Even going from indoors, nice and warm, to my car, which is right outside my door, sets me off on a huge coughing fit due to the sudden temp change. But this house is amazing. The rooms are slightly smaller than the flat, but the kitchen is HUGE! And we have a little conservatory and a little garden to ourselves, so that totally makes up for it. Our massive corner sofa doesn't fit in the sitting room due to the size/where the doors are so it's currently in two, but we're possibly looking at selling and buying a normal sofa and a cuddle chair. There's nothing wrong with this sofa, its just a shame it doesn't fit.<br />
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Even the neighbours are lovely here, they stop and chat, and are all super friendly. When one of my next door neighbours (we're on a terraced row of houses) introduced herself, I told her I cough a lot and hoped it wouldn't bother her. She said not to worry, they wear earplugs to bed because of snoring. Ace! The woman is so lovely. Sadly, her husband is not. The rude bastard knocked on my door 2 weeks ago to announce to me that I cough a lot. News to me! He said its loud, i cough a lot of the time, our houses are right next to each other, and I'm pretty sure he was either saying stop coughing or cough quieter (he's spanish so there was a whole accent going on I couldn't understand). He wasn't doing the concerned neighbour thing - he kept talking over me when I tried to explain why I cough and how I can't help it, to repeat that the houses are very very close. In the end he just left and it wasn't until I'd shut the door I fully clicked what he was saying and I was fuming. I find it funny that right after he asked me to cough less, I caught the cold a day or two later and coughed for about 48 hours without much of a break. I do think thats karma to him (even if it meant I literally coughed my throat raw). Bastard. I presume they don't cough in Spain if he thought that was at all acceptable.<br />
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The only other thing I think thats mention worthy is the trial (the drug is called Orkambi now and I think thats a ridiculous name). It comes to a close in January, although we have no idea what happens after. We do need to wait for a result from NICE, and then I think whether or not it's going to be funded at all here, and to be honest, I don't care. Everyone thinks my weight increase and my lung function increase is because of Orkambi. All of this happened in the first 6 months of the trial, where people are either on placebo or the real drug. I started getting some looooovely side effects about 6-7 months in - when there was a change in drug. But that could mean anything - that the side effects took a while to kick in, that I was on a different strength drug, I'm pretty sure there was actually a third group that was only on kalydeco and placebo lumacaftor. What I find insulting, no matter what I was on, is that they instantly assume it was the drug. I think that my weight increase was because I'd started eating at least 3000 cals a day (monitored with the My Fitness Pal app on my phone) and a new supplement, the calogen extra shots. Previously I'd had fortijuice, and I was lucky if I drank a couple of those a week because of how rank they were. I had 2 of these shots a day without fail. My weight increased, which in hand, helped my lung function and then my stability. The only thing I'm worried about, if I came off orkambi, is if there is anything being helped by it that I haven't noticed, and it tanks suddenly, and there is a little fear that my weight was at least helped by the drug as others say they have to watch what they eat now with orkambi or kalydeco as weight comes on easier. For myself, my weight is stable and has been for about a year and a half (at least) which is insane to me. I was stuck revolving at 42kg on average, sometimes going up or down. So to be at 51kg and have that number rarely change, is mad!<br />
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I suppose though, whilst the drug has been as useful as a chocolate teapot to me, as far as I've noticed, it does seem to have helped others. I've seen people go months off IVs when they were on them regularly. My need for IVs hasn't changed, it actually increased at one point, and the only thing thats helped me stay off them a few extra weeks now is the exercise, as that's the only change. I just think it's insane the price they're wanting for it. I know they're a business, but in america it's marketed at $269,000 per patient, per year, and the official results say it only shows a few % increase in lung function. dNase dose that at a fraction of the bloody price.<br />
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My lovely dietitian who helped me with all of this, and celebrated, and listened to me bitch about all things that weren't even food related, retired, so now I have another one, who is just as lovely, but last appointment, there was a new dietitian (I'm sure there's usually 2 on staff, so my old one must have been replaced) and I don't like her. I'm not particularly a fan of someone who finds it necessary to say 'poo' 5 times in 5 minutes. I couldn't care less if its her job to ask, at least the others aren't so obsessed with the word.<br />
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One last thing, as I'm sure he would be totally jealous if he didn't get a section seeing as I usually write about others. Pete passed away last month. It was strange, because its been expected, he had bad lungs in need of a tx that he had chosen not to go along with, and was in renal failure (and couldn't have survived a kidney tx with his lungs in the shape they were), and knew he didn't have forever. He was even spending his savings on stuff he'd always wanted because he knew there's no point in saving if you're not here to spend it all. But I did think he had a bit longer. I did expect him to at least see next year in. I've known him since I was 18, but in the last year or two we did drift hugely. We annoyed each other massively, and I don't know whether it was a [bad] talent, or he was doing it on purpose, but sometimes he knew exactly what to say... to piss me off. I'm easily pissed off I should mention, but he could be relentless! I think he got some sort of joy out of it though cos why else would someone be so persistent. So yeah we didn't speak much in the last months. Probably a choice of both of ours, and again, like others, we had drifted. But I knew him enough to remember he wasn't a huge fan of breathe easy (which irritated me so much when people posted it on his wall), he hated prayers, and once asked me, if anyone made a shit photoshop of him after he died, with effects and a tacky quote, to go batshit on them. I know people grieve in their own ways, and some people like to make them, but they're so horrible!<br />
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I'm still looking (and failing) for a job, which seems nigh on impossible. I'm applying for things with part time hours, but less than 20 - that's far too much to expect of myself all of a sudden. I'm thinking maybe 10 hours or so a week which would be do able, and there's loads of jobs that are only short hours or one day a week. I just cant seem to find any for me. I have skills and such, but i have no experience. And you need experience to get any sort of job these days. Most other jobs would involve things like working in a shop - i can't stand around all day (i can't stand for 5-10 minutes these days without my lower back hurting and making me feel like I'm 90) and I can't work at a till because if people spoke to me, for example, enquired about something, I probably wouldn't understand them enough. Honestly, if someone said 'Can I have a bag please?' I'd probably hear that wrong and just smile and nod... and not hand them a bag. People don't realise the extent of my hearing loss so suggestions aren't always very helpful, and when you say you're deaf, they probably assume deaf as in, hearing loss, but I have hearing loss and nerve damage, which makes for an entirely different picnic.<br />
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I really need to get out of the house though. I even watched 11 seasons of Greys Anatomy in a month and a half. I applied for an ebay specialist type job, 8 hours a week and good money (for the hours). I didn't even get an interview which pissed me off a treat - i know how to buy and sell on ebay, and did a lot of listing work in Oxfam which made me perfectly qualified. I emailed asking for 'feedback' for why I wasn't contacted, and so far all I got was 'I've forwarded your email onto the panel'. That was 2 weeks ago. The whole idea of email was fast communication!<br />
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That was al totally thrilling wasn't it! Sorry for the absolute novel. Each time I write I say to myself I'll get back into it but I can't really keep a promise like that, so I guess I'll just write a mammoth post every now and again!<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com1tag:blogger.com,1999:blog-9067658376374442747.post-82286861945115267852015-01-06T12:32:00.000+00:002015-01-07T21:13:59.587+00:002014. In a small novel.Right then. Excuse my massive lack of blogging. Apparently 2014 wasn't the year of blogging for me, although I doubt i'll ever get back into the continous posts like I used to; its more of a 'now and again' thing for me. I get stuck with what to write and I don't exactly want to write only when shit things happen. I.e. when a friend passes away.<br />
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2014 itself was a bit of a mixed bag. There was some brilliant things (moving out was a massive achievement!) quite a few weddings, meeting the one and only Gem, and some amazing friends, with nights in and nights out. The crapola side of things included quite a few people passing away. Some I knew quite well, others I'd only known in passing and only spoken to a handful of times. But either way, it doesn't make it any less sad.<br />
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One thing that definitely gripes at me though; When someone dies, why do people feel the need to write about how amazing that person was? Fair enough if they were, for starters, the beautiful Emily Thackray passed away a few days after christmas, and whilst I'd only spoken to her a couple of times, I can fully apperciate people's messages about her, saying how selfless, bubbly, full of life and simply amazing she was. Not one person had a bad thing to say about her.<br />
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Another friend passed away in the middle of the year. Ayesha had had her transplant in 2011, and had a very up and down journey afterwards. If there was something to catch, she had the annoying abilty to, well, catch it. In the past few months before she'd died, she'd been at uni, and we'd been talking a lot less. Mostly because she'd been so busy and getting on with things. I don't like to bother people when they're busy, I feel like an inconvenience for popping up on chat and saying 'hi'. So over the last several years, she'd always be the one who started every conversation. Unless I was in the middle of a drama and sent her a 'very urgent message' because I was annoying myself with my fantastic ability to be an obsessive twat. She'd also, in all honesty, severely been pissing me off, in the months before we'd drifted. She was being silly and immature, she could be just as obsessive over stupid little things as I could, she wasn't always the smartest person in terms of her treatment (she'd piss me off a treat by saying the taste of colo nebs made her want to vomit, and refused to listen to me when I said that was nothing compared to tobi nebs!). So when she passed away, and all the novels about such an amazing person who could do no wrong cropped up, I was annoyed. They were either written by people who never knew her, or were just sprouting it because everyone thinks you should never ever say a bad word about a dead person.<br />
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(Fuck that. In the very very distant future, for me, I don't want any of that shit. I want people to tell the truth about what an annoying, grumpy cow I could be. Although I do hope I've had my moments, I know my good parts don't describe even a full fraction of me)<br />
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In the couple of months before Ayesha had died, we'd talked a few times. She was always busy busy with her exams, always revising, and I again, felt like I was bothering her and keeping her from important things. But in those times we'd talked, she sounded more mature, like she'd grown up a lot in that first year at uni. I thought to myself, "after her exams are finished, I think I'll make more of an effort". Unfortunately that never came. I saw a message on her wall saying Ayesha was quite ill in ICU. I stupidly shrugged it off, thinking she'd be back on her normal ward in a few days, like she always used to be. Ayesha hadn't really updated people about her health via her facebook. She wasn't one for novelist health updates in a status. But she had told me in the first half of 2014, she'd had rejection, swine flu, aspergillious and pneumonia. Because she could never do bumps in the road quietly could she?! I'd stupidly not realised she'd been in hospital as long as she had. A few days after the ICU post, I noticed friends and family posting (what I assume were) Muslim prayers on her page. Obviously I don't understand the language they were writing in, and it was only when John came back from work to tell me he thinks she had died, that I checked again and saw a post from her boyfriend saying RIP.<br />
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I was gutted. I was furious at her for dying. And in all honestly, a bit pissed off when people had said 'I was only talking to you last week' and wondering why we'd fallen out of contact so much - fair enough I hadn't spoken to her, but she hadn't spoken to me either. It's very weird how you can go from uber close to a whatsapp message that starts with 'hey stranger'.<br />
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Aside from all of that, 2014 wasn't the shittest it could have been. My health has been stable and my weight has topped to 51kg at its highest; something I never thought I'd manage. I've been on IVs far too much for my liking, which is my aim to avoid for this year. I've gotten into 'papercutting' which is a cool craft thing, a bit dangerous when you consider me + scalpel, but the results are cool. And I've yet to lose a finger so I think I'm doing okay. The flat we have is lovely - its a 1st floor flat which makes the steep stairs a bit of a pain, but the fact that its our flat, where we live together, and are in charge of those scary bill things, and we even did the extremely adult thing of buying a sofa. A lush corner sofa that took two attempts to be delivered and accumulated in having to have the doorframe removed to get it in, but a lush sofa non the less. <br />
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2015 seems to hold a few more weddings, and a few babies to arrive. And a few cool road trips - one wedding reception we're going to will include a trip to harry potter studios with John, his sister and her boyfriend, a trip to see john's uncle, and then round to annoy gem again with my camera in her face (sorry!) before the 7 hour drive home. I can just hope that I don't do whatever I did at the last wedding/marathon road trip and don't get a trapped sciatic nerve again. It took me ages to master those crutches. <br />
<br />
I also want to venture into finding a job. I feel like I can manage a part time job, I don't know if I'll ever manage full time, but I think part time is a good place to start. I've mentioned this in a previous post, and I swear no one is fucking happy about the choices I make - e.g. they say I'm lazy for sitting at home (working on my health!) and not having a job, but when I make movements to look for a job, people doubt I can manage, some say I'd make more on benefits(!) - a massive lie though, believe me, I've done the sums and would rather not be tied up in the benefit system if it was avoidable - and saying that I'll probably catch stuff. I already catch stuff from just doing the weekly shop or going for a cup of tea with a friend. I'm going mad sitting around now I have more energy. I need to put it to use.<br />
<br />
So. Novel over I think! Here's some pictures to round it all off :)<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBoP86UsHdrG2zKW3yeKGsnZP8EazxNwhxL5qEsUVH0-_bxPD_dO5eLeRxXU2ISEyu-2k-PAsrO6Rvo1qvMYHNqZVSg_cuaKJBv_DOx-XfP2FwK-XVo-jjmXeb-cG_seTLKjHjenL4k2A/s1600/1513663_10152678364198645_7241999464052569074_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBoP86UsHdrG2zKW3yeKGsnZP8EazxNwhxL5qEsUVH0-_bxPD_dO5eLeRxXU2ISEyu-2k-PAsrO6Rvo1qvMYHNqZVSg_cuaKJBv_DOx-XfP2FwK-XVo-jjmXeb-cG_seTLKjHjenL4k2A/s1600/1513663_10152678364198645_7241999464052569074_n.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Paper cutting :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN6HORYutGv5wQ544DYS7ILcft26R4yJNKxCn36qQe0MGvxBiAq2BBcmBpiqKvTOX3ntkIayAMcFcTuWq69qxJm86gXPdS_3bTaEnIZYU8t0ZM4eZF3PZoydqZB0yeoTKHpoCPih_6xVc/s1600/10264957_10152195689448645_2473358746676686959_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhN6HORYutGv5wQ544DYS7ILcft26R4yJNKxCn36qQe0MGvxBiAq2BBcmBpiqKvTOX3ntkIayAMcFcTuWq69qxJm86gXPdS_3bTaEnIZYU8t0ZM4eZF3PZoydqZB0yeoTKHpoCPih_6xVc/s1600/10264957_10152195689448645_2473358746676686959_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gem!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47GeaMaAu0gpr2P3RX9c1hNosezENQxQFmwUS841uwdqAIx9IqdUC1aDNxZYk6UfCL3_4JqgSrs98774iTPdAhtoNJK-UkrZINVQJirgc-IU-BhILq8VZLjyMLMGnmXZ2oAZUJPcKkl4/s1600/10294416_10152195686868645_2848573156002505251_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg47GeaMaAu0gpr2P3RX9c1hNosezENQxQFmwUS841uwdqAIx9IqdUC1aDNxZYk6UfCL3_4JqgSrs98774iTPdAhtoNJK-UkrZINVQJirgc-IU-BhILq8VZLjyMLMGnmXZ2oAZUJPcKkl4/s1600/10294416_10152195686868645_2848573156002505251_n.jpg" height="320" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and John. I'm small, yes</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOyzSPiODIUuEfxMd3gfj-fDQ2fCjnPESec8lqiLlFxCmp-N2OOuEoXO-y43jSWi1DJP5zoDPORuuoRc0XDSalV7d3JvilaLPjS9aUcE8_uslNm9oYtNnpSqrZx-HkcDtxNnB-zDOqjyg/s1600/1908066_10152454992908645_3210798004859418945_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOyzSPiODIUuEfxMd3gfj-fDQ2fCjnPESec8lqiLlFxCmp-N2OOuEoXO-y43jSWi1DJP5zoDPORuuoRc0XDSalV7d3JvilaLPjS9aUcE8_uslNm9oYtNnpSqrZx-HkcDtxNnB-zDOqjyg/s1600/1908066_10152454992908645_3210798004859418945_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">SOFAAAAAA</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjMdV0oYfAsMudCeL23hEQCzbWdvNGltLIXss9laAII548e1Cau-fjN9ghWwqtBrdp14Xda6IqBveFt43sHJ0QW8vLL8NYqZjpaOGfp-dVimQ_Qr8QfS2Pxu7cBLGhkxAf8V0r5PI0WMI/s1600/10306740_10152353118998645_6108620214679219561_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjMdV0oYfAsMudCeL23hEQCzbWdvNGltLIXss9laAII548e1Cau-fjN9ghWwqtBrdp14Xda6IqBveFt43sHJ0QW8vLL8NYqZjpaOGfp-dVimQ_Qr8QfS2Pxu7cBLGhkxAf8V0r5PI0WMI/s1600/10306740_10152353118998645_6108620214679219561_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Maturity with my morning tablets</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2VSkdZ_WHazAnwHf0Ok2RuTGXzZCVXSocRB9oqdl3jinzFXKlbcdFOJWyRVeTuUh6mnq2K1kUMsR8AnZ6uIfIAX4-OIEun5OjMoOu6b_L68eRRTM_v7DJ3shH00Wd9ZAQI6zuKQhcN54/s1600/10731119_10152641444693645_1738606922363902846_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2VSkdZ_WHazAnwHf0Ok2RuTGXzZCVXSocRB9oqdl3jinzFXKlbcdFOJWyRVeTuUh6mnq2K1kUMsR8AnZ6uIfIAX4-OIEun5OjMoOu6b_L68eRRTM_v7DJ3shH00Wd9ZAQI6zuKQhcN54/s1600/10731119_10152641444693645_1738606922363902846_n.jpg" height="320" width="292" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Freedom from one of the many IV courses</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlZ6gbEb_a4YUCSpClwqyMvJqbjVCrKcFW3-lNk2zlWGTXV122HUlwXdkxDFG3ZYA1SQ25PDr0mJxZ4vdBYmPEtsaBtHUYz5VkbOxK4Ggs3U33HU0N_juCtKmOaY0dauUSKXPqcUsk4yU/s1600/10435992_10152335464728645_4548183122522806606_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlZ6gbEb_a4YUCSpClwqyMvJqbjVCrKcFW3-lNk2zlWGTXV122HUlwXdkxDFG3ZYA1SQ25PDr0mJxZ4vdBYmPEtsaBtHUYz5VkbOxK4Ggs3U33HU0N_juCtKmOaY0dauUSKXPqcUsk4yU/s1600/10435992_10152335464728645_4548183122522806606_n.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The little yellow duck project was launched this year - this is one of the ducks I made that was left with a name tag explaining what to do</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnAc-te-ULE5oltrXB7soup6nGCgGVUlfED2nAdzS3lA9yw9Na1se5iQMxga1x_5X7PqQED3XeeJhrHVnW7ysIatbHzUAYwY7kKRysvNyX6mFDy5VwOwlXulNtSyUurlMqVwH1gmOKRU4/s1600/12783_10152603659688645_6908669208326984607_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnAc-te-ULE5oltrXB7soup6nGCgGVUlfED2nAdzS3lA9yw9Na1se5iQMxga1x_5X7PqQED3XeeJhrHVnW7ysIatbHzUAYwY7kKRysvNyX6mFDy5VwOwlXulNtSyUurlMqVwH1gmOKRU4/s1600/12783_10152603659688645_6908669208326984607_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Weird firework photo</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCdZIrKCxQYEokV9teqJMjxYO3MWAr9DCq20N3HXCebhiafeANGO4XQb6z30VKI63HGo4FHwwA3VzVDGH4Ltw3v02QLR13tpnFaGZpqnB_zqUwR8LuPUF_ogQ6MHnifF3u_et1B03hpxg/s1600/1621767_10152603714468645_7950664125061402620_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCdZIrKCxQYEokV9teqJMjxYO3MWAr9DCq20N3HXCebhiafeANGO4XQb6z30VKI63HGo4FHwwA3VzVDGH4Ltw3v02QLR13tpnFaGZpqnB_zqUwR8LuPUF_ogQ6MHnifF3u_et1B03hpxg/s1600/1621767_10152603714468645_7950664125061402620_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being sensible around the fireworks. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJB-lkgWoV0IiCBp8lu8nj_I-KpHZw9UfQaoYQpNa_mgS6P74bMLUgLzrLBk8arqjNxwAu_kdeH3Plk_udQVA90WeYNzIC24t8hPYQ3pJ6WyXsEjRKWOfYuI6tqIAJv5AGb1Si4AUKsNM/s1600/10363570_10152240570418645_7881857916545813744_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJB-lkgWoV0IiCBp8lu8nj_I-KpHZw9UfQaoYQpNa_mgS6P74bMLUgLzrLBk8arqjNxwAu_kdeH3Plk_udQVA90WeYNzIC24t8hPYQ3pJ6WyXsEjRKWOfYuI6tqIAJv5AGb1Si4AUKsNM/s1600/10363570_10152240570418645_7881857916545813744_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The lovely Polo I swapped the Fiat 500 for in April :)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWhun5lNbtj3PLOFFUgr_TCtWfp2dtTDx490h9RoM90qI5rOc71WPX2x1Uc_IdU58VZSEPYtSKLtWkjfD-kDQLev6aw2liX2x3lzPDujxSwJoSS280qvYHneDYXL1RGRd9UgTuGzdnVhA/s1600/10906333_10152737483143645_8328970617874242758_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWhun5lNbtj3PLOFFUgr_TCtWfp2dtTDx490h9RoM90qI5rOc71WPX2x1Uc_IdU58VZSEPYtSKLtWkjfD-kDQLev6aw2liX2x3lzPDujxSwJoSS280qvYHneDYXL1RGRd9UgTuGzdnVhA/s1600/10906333_10152737483143645_8328970617874242758_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The kitchen! Only took me 10 months to get it how I wanted</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhngomJ8zV9gaskbb7r8TnniTG1Yx9BDzQ4mayjlGdjlLcyNhCJyccrYa9fwHLSahAYh6_amINMIIvNOdNtCg2ndv4Y-Ft7wMd8hgFepu5ZHiXxLJLj4edfmxDe7bjlB_fLdeoyOQNvQ_g/s1600/10259700_10152652346598645_5375258444347157883_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhngomJ8zV9gaskbb7r8TnniTG1Yx9BDzQ4mayjlGdjlLcyNhCJyccrYa9fwHLSahAYh6_amINMIIvNOdNtCg2ndv4Y-Ft7wMd8hgFepu5ZHiXxLJLj4edfmxDe7bjlB_fLdeoyOQNvQ_g/s1600/10259700_10152652346598645_5375258444347157883_n.jpg" height="320" width="206" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first tree!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj03HQWFzDwrp2G0MPRUrB3ZEvBR-gkYUMT2z6hU0LcDtZD3TSdLiunjr8_7mccX63OQkuKK2ClLjL-2Zkc1ateAkhhOcHgEUiMPA0n_DKSeo5l6hGNhAHZBDWyWUkJIba6mzrzt1AKF5M/s1600/10898148_10152722703918645_3792311052278747800_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj03HQWFzDwrp2G0MPRUrB3ZEvBR-gkYUMT2z6hU0LcDtZD3TSdLiunjr8_7mccX63OQkuKK2ClLjL-2Zkc1ateAkhhOcHgEUiMPA0n_DKSeo5l6hGNhAHZBDWyWUkJIba6mzrzt1AKF5M/s1600/10898148_10152722703918645_3792311052278747800_n.jpg" height="212" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Another weird firework photo, from new years eve</td></tr>
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-56780407014149168552014-09-25T12:52:00.002+01:002014-09-25T12:52:52.911+01:00To work or not to workOnce again I'm sitting here wondering the viability of trying to work. Despite the obvious, being more ill than you look, I still feel lazy for not working. It's silly though; I have no idea if I'd cope. I'd have to make sure I have enough time to do the things I do now, like cooking, doing the washing and tidying etc and even though it really takes it out of me to do those things, I find myself wishing I had a job too. The main worry is that it'd take a toll on my health. The last time I worked, it was a crappy job cleaning cottages, in hindsight it was a poor choice. Maybe I would have coped better with a job that didn't involve being on my feet all day, carrying heavy things like massive hoovers, trying (and failing) to make beds (which, I swear, is the single most exhausting thing. It's so bloody difficult!) and also not standing in a freezing room folding sheets still damp from the washing machine.<br />
<br />
The funny thing is though, which I've probably mentioned a million times, is that I was 18 and had amazing lung function, I think it hit a high of 80%. I lost 20% of that quite quickly when I started to feel rubbish in the winter, which resulted in me leaving the job after 6 months. A 6 hour shift, one day a week, and I couldn't cope. I was sent home more than once when I couldn't continue with pleurisy pain. I don't know if that was my lungs acting up or the situation that aggravated it. So therein lies my problem: Would working send me to a similar situation, where the risk of losing 20% would make me far more ill than I've ever been, or would it be good for me? I'm more thinking of the social side, which is why I stray away from the idea of working from home (although that is the ideal choice, surely?) but I'm so bored sitting on my own, when people don't have time for me and honestly, aside from my boyfriend, the people I talk to most are all online CF friends. Not people I can just meet up with in half an hour and go to the pub with. I'm not expecting to find a job where I'd be best friends with everyone and natter away the day. But people who I'd get on with well, people to chat with or spend time with outside of work too. <br />
<br />
People ask why I don't go back to uni. Not happening. Uni was more effort than it was worth and that was just the students that needed their heads deflating. Add that to uncooperative tutors and being marked down for reasons that weren't always fair, there's a multitude of horrible things I'd rather put myself through than go through that again. Not even mentioning that, while uni is meant to make people into a social butterfly of sorts, I left uni with no new friends, despite trying. The only friends I ever made, and still talk to, are those from my sign language course. This is also why I don't want to do open uni. I'd probably never finish anything, getting distracted while continually sitting on my own. I can't even watch a movie on my own without pausing it several times, so an average 2 hour movie takes at least 5 hours to watch.<br />
<br />
I also get people asking stupid questions about venturing into areas of photography. Mainly wedding photography. Because to them, its something that looks easy and you can jump into. I can barely cope being a guest at the wedding, sitting down for the majority of the day, yet alone following a couple around all day with two cameras, flash heads and 5 lenses lagging me behind. I also avoid portrait photography initially, as I'm not very confident with posing people, ordering them about etc. You also need a pretty good customer base to make a living off that. In a dream world, a contract with a massive company would land on my lap and I'd be paid thousands for each photo. But that won't happen. That's not me being pessimistic. Its realistic. A local art shop is willing to sell prints of my work, but that would be money on the side. I would never make enough to consider it a wage.<br />
<br />
Ideally, I'd be happy with a job that was part time. I can't work directly with customers (cos of my hearing, its hard enough to understand and follow people I'm familiar with) and I definitely can't work with phones. I'm sick of explaining this; a loop system won't bloody help! My hearing doesn't work in the conventional way any more. I hear sounds/noise, not words. And I lip read, so I have to try and put the two together. And obviously, I can't work standing all day/lifting and carrying things. Although being pint size would probably explain that in itself, even before the crappy lungs. <br />
<br />
On top of all that, it needs to be someone who knows about my CF and deafness and is willing to work around it, for example, all my hospital appointments, and whether or not they're okay with me coming in while on IVs, and when I feel too crappy to even focus yet alone go to a job. Thats even before regular days off like holidays. Some people might have amazing bosses who work around it, but a lot of these people are those who've had the same job for a while and who's health has slowly declined so they, and their boss, can slowly adapt.<br />
<br />
It seems more stress than its worth. And I sound beyond picky. But I can hardly do a full time job when I'm currently too tired to manage the job I do at oxfam one day a week. If you add on to the fact that I have little experience in places like office jobs, I'm hardly a number one candidate. I'm more or less just bored of having very little life, and wouldn't mind being able to earn some money rather than relying on benefits, which I hate having to do.Who knows, maybe getting out, being more social, and getting into a proper routine might even help me.<br />
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I've been told as being 'disabled' can make me more desirable than others; hiring someone differently abled, to be PC, looks good for a company. It doesn't guarantee you a job though, but I don't really have much else to help. I've got average GCSEs, which are probably moot by now surely? My A levels were in health and social care, and art. Obviously helpful. I've done two college courses resulting in level 1 sign language and level 3 diploma in photography, and I've done a uni course resulting in a 2:1 degree in commercial photographic practise. Honestly I think the only thing that I have that helps is the charity stuff I've done, using systems on computers and lots of social media work.<br />
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I don't know if I'll ever find a job, it doesn't have to be perfect although in an ideal world it wouldn't be a job that crushes your soul... its something I need to look into though. Despite not working now, and having reasons for it, I'm looked down upon. Even by people in the CF community. We're all different. I'm aware people in worse health than me work every day and manage. My health probably needs to stabilise properly before I take a job. But even then, perfectly healthy people struggle to find anything, so who says I'd find something?<br />
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<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-88271456366974932412014-08-25T17:31:00.000+01:002014-08-25T17:31:13.717+01:00Kids with CamerasIf anyone was watching the 3 part series that was on ITV 1 the past few weeks, they'd have seen the last episode which was aired last Thursday, and it had a 13yr old boy with CF in the episode. It was filmed in the RVI, the hospital where I'm treated, and the CF doctor who appeared for a couple of minutes was one of the doctors who treated me as a kid. And I have to admit that little section of the episode, severely pissed me off.<br />
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I remember as a kid, I wasn't spoken to. I was spoken at, or about. But no one talked to me, explained much, or involved me in decisions. The kid in the episode was a lot more ill than I ever was, and needs oxygen overnight, and a nippy which is like a non invasive ventilator, and it pushes air into your lungs, it's usually given to people who don't breathe properly overnight, or those with sleep apnoea. <br />
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The boy in the episode wanted to be off oxygen for one night, so he could have a sleepover at his friends house. The doctor listened to this request and said they'd try and see if he can manage off oxygen and the nippy, and see how he fares; if the result of the overnight 'experiment' was successful, to say, his sats didn't drop too low, he'd be allowed to forego his oxygen for one night and stay at his friends.<br />
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This is the part that pissed me off; when I was a kid and wanted to go to a friends house, have a sleepover, or if there was something happening where IVs would get in the way, the doctors always managed to schedule IVs so the fortnight would always include that one bloody day. I'd request that they started a day later, or after the weekend if it was a Friday, and I was met with 'No'. No bargains, no requests, just 'have your bloody IVs and get lost'. Or at least that's what it felt like. Moving to Adults was surreal as I can now request IVs when I feel I need them, say I don't need them if I feel fine (in paeds I got them every 3 months routinely) and if I want them ahead of or after a certain event, I can have them done that way. Being in control of my treatment for the first time was a shock to the system, but obviously it's something that was bound to happen as in adult care, you do have to agree with the treatment. That's also how I got them to change my IVs from tobramycin, the drug that made me deaf, to an alternative (colistin). In kids, I couldn't say I didn't want the drug or wanted something different, and as the doctors (there were 2 consultants) couldn't admit that tobra was the cause of my hearing loss, they kept me on the drug for a further 6 years. Spineless bastards. I do sometimes feel like throwing something at the doctor every time I pass him in the hospital.<br />
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All that aside, the programme was good, and it showed a really good insight to what its like for a kid in hospital, and got some awareness out for CF which was brilliant. And I have to admit it was a bit theraputic yelling 'TWAT!!!' at the TV screen when that doctor appeared.Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-56088475259747709122014-08-11T21:29:00.000+01:002014-08-11T21:29:34.925+01:00I think a tumbleweed just passed by my blogAnother 4 monthly update *twiddles thumbs* Poor neglected fucker.<br />
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Okay yes, I'm crap at the updates. I have nothing new really to report. And in all fairness, whilst I was in the beginnings of the lumacaftor/ ivorcaftor trial, I wasn't allowed to really talk much about the progress unless it was to close friends and family - there was a contract of sorts I had to sign, several times through the months every time one single word was changed, and it asked everyone not to post things on public forums or talk to strangers about it, simply just so that false information isn't put out there, and people don't get disheartened or get their hopes up. Results have now been posted and everyone has either finished taking the drugs or progressed onto taking the real drug (for definite - as there were three groups and only one group was taking both real drugs, rather than placebo or a real/placebo combo) so now I'm allowed to open my abnormally large gob about it. <br />
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If you remember last August, my 22nd birthday was met with a bit of a shit clinic appointment two days later - my lung function had halved from its usual 60-ish% and was sitting around 30/35%. I'd definitely felt it but I'd naively put it down to the heat, as I'd had salt tablets introduced a couple of weeks before when I'd had a drop of about 15%. It think the recent recovery of anaemia meant that I'd forgotten what 'good' felt like, so when I declined rapidly, it was just like going back a bit, and it was still kind of normal. If that makes sense. One mind numblingly boring two week stay and my lung function/general well being had increased. Because of the nature of the infection, the feeling good period didn't last long, and not even a month after finishing my last IVs, I needed more. But the doctor had been speaking to me about the trial, and I was very keen. So was he - nothing seemed to be working for long, weight was falling off me and we couldn't get it back on fast enough. So I wanted on the trial. The kicker was that I had to stay off any extra antiboitics for four weeks prior. This meant I still took my usual daily cocktail and nebs etc, but couldn't have IVs or cipro. It got to the point where I was desperate for them, coughing up what closely resembled a frog every 20 minutes, and not being able to get out of bed, but I was determined to get on this bloody trial. I managed, and my lung function was 40% for the 3rd attempt on the day I did all the tests to see if I was eligible, and I was literally scraping the barrel, as any lower and I wouldn't be allowed on it. They have to be ethical with trials, and if your lung function is below 40%, and the drug caused you to lose even more lung function, that would be their fault for accepting you. On the other hand, it couldn't be more than 80% so they could see an improvement if there was to be one.<br />
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As soon as I started the trial, I started IVs too so never really noticed a difference in the first two weeks, and that's when people started to notice a difference with Kalydeco. After 6 months, I'd finished the first part trial, I don't know what group I was in though. My lung function had increased back to the 60% I'd had previously (although, and people never listen to this part, you have to consider my weight gain, and also the fact that maybe because of the sudden loss beforehand not long previously, getting that last 20% back wasn't as hard as it would be in other circumstances) and I'd gained a hell of a lot of weight I could never have put on before - I'd gone from a pathetic 39.2 kg, making my BMI around 16, to about 48kg at this point. I've since gained a bit more, so I'm now 51.2kg and that means I've cracked my seemingly impossible target of 8 stone. Yeahhhh fatty!<br />
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As I say, everyone who decided to continue is now taking the real drug, and should hopefully be doing so until around spring 2016. Hopefully by then it'll be approved on the NHS though. I still go to the research dept every 4 weeks, once for a simple blood test (they have to now monitor our blood levels every 4 weeks because one person had slightly elevated liver levels, most likely not as a result but still something they have to check) and for a full work up every other appointment - basically I get an ECG, they check my obs, weight, lung function, make me pee in a cup, and then I take the drugs, eat all their food, and piss off. <br />
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My lung function hasn't really increased much since. But it is stable, and that's the important thing. I haven't had to stay in hospital since I came out last summer. IVs seem to kick in quite quickly, at least the last few rounds have, and seem to work more effectively than they used to, but I've still got an annoying dry cough lately (which could actually be any number of things, and fingers are edging towards pointing at things like hayfever, the heat, sinus issues etc). I feel better than I have in a long time, but still don't think I'm 'healthy' - I volunteer at Oxfam for one day a week, for about 5 hours, and the day leaves me feeling tired even though I'm just sitting at a computer or taking photos, so that proves to me that I'm still not ready to work. I would love to, and I keep trying to think of things I could do, but I'm seriously kidding myself just yet. I just think back to when I was 18, and had a 6 hour day job once a week, light cleaning holiday cottages - I clean my flat more than I did in those places as people left them pretty pristine. After 6 months my lung function dropped 20%. I'm not taking the risk of that again, at least not until I know I can manage it and avoid something like that happening again. Especially as my lung function and general health isn't what it was when I was 18, and I've got a few added extras since. In an ideal world I would be a photographer with my own business, but businesses are stressful and I can't do it on my own. I would happily settle as a photographers assistant however! Anyone who suggests 'getting into wedding photography' needs to think about what they're saying. I can just about manage 5 hours at a desk, chatting and drinking tea. I can't manage a full day on my feet running after a wedding party every week. So please shut up.<br />
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On the other hand, a friend recently suggested that I become a 'secret shopper' and go along the lines of trying to be served in pubs or off licences to see if they ID me. Considering I'm actually 23, but pass off for between 15-17 on average, I'd say that's probably a good idea... also a bonus if they paid for and let me keep the drink. Ahem. <br />
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Oh, and! We've been in this flat for 6 months now! At the end of the month, the 6 month lease will be up and we'll be renewing it as we quite like this flat. We've even bought a gorgeous corner sofa that I can't wait to be delivered. Mostly because these shitty ikea sofas murder your back, and it was so depressing to come back to them after sitting on various sofas that are so soft you could dissolve into them. We won't be able to stay here forever though; the stairs are quite steep and when I do the shopping (middle of the day, so John is at work, but the shops are a bit quieter) I have to leave heavier things at the bottom of the stairs providing they're not freezer/fridge essential. <br />
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All in all, not much has really changed, aside from trial stuff and settling in the flat. A good thing I suppose. I'm quite happy with the way things are, but that makes for writers block and nothing blogable. I really need to either get some suggestions or knuckle down on blog posts, in between hoovering all my meringue crumbs and cleaning up split cups of tea...<br />
<br />Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-68501821726941317562014-04-01T22:00:00.000+01:002014-04-01T22:00:53.996+01:00The past 6 monthsI haven't actually written a blog since mid of October last year. So there's a good nearly 6 months to catch up on.<br />
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First things first, I moved out! Me and John got a place together in February, after spending 6 months uming and ahing about it, wondering if we'd even afford it. In the end, we found a really nice first floor, two bedroom flat exactly where we needed it, so decided to go for it. It's the only way to see if it would work out seeing as staring at sums for several months was just getting us nowhere.<br />
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We had plenty of help, we had most of what we needed, various family members helped out and another family friend gave us a few pieces for free, and got other pieces nice and cheap (mostly the coffee table and two sofas. They're white Ikea sofas but they're quite small so we're aiming to save up for a while and get a nice corner sofa instead). It's private so obviously you need to ask permission if you want to decorate or anything but everything looks fairly new, and the walls are nice and bright, and we're allowed to put up wall hangers to put up pictures, yay! The stairs into the flat are steep but as long as I don't have to go up and down loads, I'm fine with them, and the back door steps are less steep so there's an alternate route if I can't manage. The local social services said that if I do ever need a stair lift and the landlord is okay with it then they'd help me with that but I'm really hoping that's a long way away. If anything, I'm hoping they'll help build up more strength as currently my legs tire quicker than my lungs.<br />
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I've gotten used to housewife life but I don't mind it too much! In fairness, at home, I did my own washing, bought my own main food etc, the difference is we buy more food now, house bits and bobs, and I do a bit more washing but it's not too much to handle. And I've actually got the time and space too cook now so we have homemade meals all the time. I've got all day to do what I need to do so I don't have to exhaust myself running around. As there's just two of us there isn't too much to have to clean up either, a massive change from living at home with four other people!<br />
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Plus, over the last six months, I've still been on the ivorcaftor and lumacaftor trial. The main trial has finished, and that meant I was allowed to continue onto the rollover study. This is two years (TWO BLOODY YEARS!) long, but whatever drug I'm taking now, its definitely a real drug. The first 6 months was devoted to trialing lumacaftor on its own, kalydeco and lumacaftor, and a third group who were taking all placebos. I still don't know what I was taking and I won't find out until all the info has been collected (so probably not until the next two years are up). The rollover study is still divided into three groups, but its kalydeco and lumacaftor, and two other groups taking lumacaftor at two different doses. But there's no group taking an entire batch of placebos.<br />
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To be perfectly honest, I can't tell what I'm on as there was a big change, probably going hand in hand with several things; after my horrendous health in summer, my weight was an awful 39kg, which meant my bmi was about 16. Since then, my appetite came back to all its glory (even after the weird week where I couldn't face food for no apparent reason) but I also snack all through the day and take two calogen extra supplement shots a day too - I've always been shit at scandishakes, enlives and fortijuices, as they fill me up so this suited me perfectly as they're literally just 40ml shots. And since then, my weight has increased to it's highest ever of 48.5kg. So naturally, it's really hard to tell if the drugs are real, and working, or if the nearly 10kg of desperately needed weight is helping. I've never hit past 46kg and that was really short lived, generally I was stuck at around 42 - 44kg at the most. Peg feeds were threatened, diabetes was considered, creon was checked, basically everything they could think of to as why I didn't gain weight but I did eat three meals a day and ate between meals (obviously not enough).<br />
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They say that when you start kalydeco you notice a change in your chest gremlins. Both times at starting different drugs, I was starting IVs too (a coincidence). IVs change the lovely contents of my lungulars too, so basically there's no way for me to tell, even if I was allowed to tell, which drug I'm on. For the more irritating part of the last 6 months, and the next two years, people have naturally been interested in how I've been progressing. I've had to repeat so many times, that I'm doing well in myself, my lung function has increased (although its only increased back to where it was before my bad drop in the summer. That said, I thought I'd never see 65% again - I still need to work on my fitness level so I actually feel like I have this much though.) I don't know whether to attribute this increase and better health to my massive weight gain and being in a better routine (i.e. always waking up in time for breakfast instead of sleeping in so long you miss a meal) or because I'm on some form of real drug. On top of that, I'm supposed to be careful to who I speak to as they don't want the wrong information out there. I'm encouraged to talk to friends and family but they don't want you to talk about in depth stuff on public forums/to strangers. I suppose talking on my facebook status is okay as it's private, and on the blog I'm not really giving away too much. I should know that by now anyway, I've read the contracts about 5 times!<br />
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At some point I should get around to taking photos of the flat for those bored enough to see where I spend most of my day! I think I've covered the main changes of the last few months, so I'll end here - if I carry on any longer my rambling gets out of hand. Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-72649110444589421052014-03-25T18:28:00.002+00:002014-08-11T21:30:26.375+01:00Kerry xxxThis isn't a blog I wanted to write. <br />
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Obviously, it's not a blog you want to write about anyone. But with Kerry, it seems even more unfair. I wanted to be able to write one day that she got the call she'd been waiting for and was recovering from the lung transplant so she desperately needed. Beyond needed. <br />
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But that never happened. On 21st March, Kerry passed away, surrounded by her family, fiancé, and puppies. She was 23.<br />
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I do wonder if Kerry knew the staple status she clearly held within in the CF community. As she was too ill and too exhausted to post on facebook herself, people would be hanging on the every word that came via Josh, her fiancé, as he tried his hardest to keep people updated on her, even when things were quiet and there hadn't been much change. For nearly two years Kerry waited on the transplant list for a call that never came, and it was an even longer battle before that to gain the weight she desperately needed or else she would be refused to go on the list. I remember back when she was well enough to post and blog, and she'd update everyone on her progress of controlling her diabetes and also gaining about 3 stone (She went from a fragile 5 stone to actually passing her target of 8 stone, along with the help of Megace to increase her appetite which was a fight in itself to get the drug prescribed. She couldn't even use her PEG as she was allergic to feed products). She was so proud of what she'd achieved, and she definitely had more determination than I've seen in a long while which is probably one of the main things that kept her going for so long despite being so ill, hooked up to her BiPap and basically bed bound for a large chunk of the last two years.<br />
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Despite having a rough time of it, she was also the poster girl for Live Life then Give Life, which isn't too surprising considering the fact that she was stunning, but it also portrayed the message well that sometimes you can't always see the fight in someone's body. Since she passed, people have been sharing the post from the LLTGL facebook page and it's reached literally thousands of people, and if it any amount of people sign up, you know she'd be greatful. I posted the link to the sign up page on the organ donation site on my own facebook, and several people shared it, so if it made people at least think about it, I'm happy. I don't get involved much with transplant stuff as I'm still a while away from it myself but I do try and urge people to sign up or tell them about how it's helped so many people I know finally get to live their lives. I just wish Kerry got that chance. She never even got a chance to get married, which is one of the things she wanted to do with new lungs so she could really enjoy the day.<br />
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I'm not going to pretend I talked to her every day, or that we were best mates or anything. We did speak now and again, but not for a long while as she had enough to contend with and probably wanted to use the little energy she had to communicate with her family and close friends rather than listen to my wittering on.<br />
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She seemed to just have such bad luck health wise over the past few years. With everything from diabetic stuff, needing weight gain, to several lung collapses and even having to be admitted to hospital a handful of times which is one place she made very clear was not her favourite of places to be, it just seemed like she had to get her lungs, just for a bit of good luck, to make the past few years come to a point even? It was something everyone knew could happen, she didn't expect to make it to christmas 2012 yet alone see the one after that, but she had a hell of a lot of fight, and yet put up with it all without complaining, seeing the positive side, thinking of others before herself. She was always one to ask how you are, or comment on your blog (and assured me she was one who read mine when I was considering jacking it in as I thought it was literally viewer-less). Definitely one of a kind, and it makes no surprise her story has already reached national press.<br />
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Josh has also set up the Kerry Alex Thorpe Trust on facebook - <a href="https://www.facebook.com/thekerryalexthorpetrust?fref=ts">https://www.facebook.com/thekerryalexthorpetrust?fref=ts </a><br />
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I know she was friends with both Clare and Loz, so I hope they've all found each other wherever they are xxxMeganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-5088554069000006802013-10-29T17:25:00.000+00:002013-10-29T17:25:17.230+00:00From the other side.People love to judge those on benefits. If there's nothing visibly wrong with you, you're branded a scrounger, and people look down their noses at you. Park in a disabled bay and get out without a wheelchair or massive limp, and you're stared and tutted at. It doesn't help with all the programmes on tv lately where it shows people on various benefits, proud of what they get from the government rather than working to earn a decent wage. And tonnes of newspaper articles that show families being given more than enough to live on, and being given huge houses with several bedrooms, and enough money to buy their children designer brands. And you also get the benefit frauds who lie about illnesses and injuries in order to get disability benefits just because they don't want to work. This all means that people with real illnesses, especially the 'invisible' kind, in which CF largely is, severely struggle to get what they deserve. <br />
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Even before the new guidelines with the change from DLA to PIP, it was (and still can be with other benefits such as ESA) incredibly difficult to fill out the forms in a way that showed just how bad your illness can restrict you at times. I know several people who would qualify for either ESA, higher rate DLA (or both, really) and either haven't applied because they're worried the stress that they'd go through trying claim what they need, or have been refused the rate they do qualify for, purely because the people who decide are heavily uneducated in our illness(es).<br />
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Many people with CF have been told they're fit to work and don't qualify for benefits, because we don't 'look ill'. You don't see the effort it takes to get up in the morning, after a night full of coughing fits. You don't see how long we spend taking tablets, doing nebulisers, taking inhalers and doing physio every day, just to try and stay stable. All the painkillers and paracetamol taken for various headaches, temperatures and joint and lung pain. The supplements taken to try and gain enough weight due to our high dietary requirements. You don't see the time spent in hospitals for appointments and admissions, and the various clinical tests we have to undertake just so the hospital can monitor our health. The medication and equipment we drag around all day. The IV and oral antibiotics we take, antisickness, painkillers, vitamins, enzymes, various other meds for things such as reflux, liver disease, bone thinning, CF related arthritis etc. And on top of all that for some, insulin, overnight feeding or supplementary oxygen. <br />
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On a bad day, I can hardly get out of bed. Barely enough energy to get to the bathroom two doors down. Having parents, sisters or my long suffering yet never complaining boyfriend bring up medication, cups of tea and food, because I know that I just can't face going down stairs and then all the way back up again. Or even when I'm in hospital and attached to drips and oxygen, with back pain, temperatures and O2 headaches that feel like someone is trying to crack open your head with a meat cleaver. But once I'm back out of hospital, you don't see all that. I'm not perfectly healthy. I never was and never will be. At the moment, I'm obviously too well to need to consider transplant, but I'm too ill to be able to be a normal 22 year old, and definitely too ill to work. My lung function in the past year has repeatedly jumped between 35% and 60%. I get out of breath walking ridiculous distances and usually have to get carried up a flight of stairs if there's too many or there's no alternative. I use wheelchairs when I can't face walking around, like in shopping centres. My back hurts when I walk, when I stand around or when I cough when standing to the point where I have to sit down. I don't need oxygen much but have been admitted for it twice in the last year, out of three admissions. I'm on IVs every 2 weeks to 3 months, for either 2 or 3 weeks at a time, and we've started to add a third antibiotic in instead of just the two. And on top of all that, my hearing is fucked beyond repair to where I rely almost totally on lipreading. I can't understand anyone without it, I can't hear a thing without my hearing aids, this is all due to a mixture of hearing loss and nerve damage from antibiotics that I <i>know</i> I wouldn't be here without. I can't hear on the phone, I can't watch tv without subtitles, and I can't understand people without them speaking clearly and not mumbling. I even struggle to understand some of my closest friends and family because my hearing is that messed up.<br />
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But if you look at me now, you don't see any of that. If you sit in front of me and ask a couple of run of the mill questions that probably have nothing to do with my illness or disability, you'd never know how much time I spend trying to stay well, you'd never know how housebound I really will be if you took away my mobility car. It's actually ridiculous to say that you can only qualify for higher rate mobility of PIP if you can't walk 20 metres. If you asked me to walk 20 metres up a hill, up some stairs, or on my worst day, a flat surface, I wouldn't reach the finishing point. If you asked me to walk 20 metres with a load of food shopping, I would genuinely struggle and probably not get to the point without someone helping. If you took away my car, I'd rely solely on people driving me. I wouldn't be able to get the bus, because whilst the bus stop is at the bottom of my street, you still have to remember that the nearest bus stop to your destination is still usually a ridiculous distance away. The nearest one to my hospital is at the bottom of a hill, where if I walk it, even feeling well, I have to stop and sit several times. <br />
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But again, ask me to fill in a vague form, or an unfairly judged medical by someone who doesn't know what cystic fibrosis is, then they'd take away my benefits without a second glance. They'd tell me I'm fit to work and I should toddle off to find a job. I'd love to work if I could. But there's a lot of irony in taking away my main source of travel and then telling me to go get a job, illness aside. <br />
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Plus, I do really feel for those who try and help us get what we need. Our CF social worker has told me he has his work cut out when the changes come to our area, when they reassess those on DLA and change us to PIP, because he'll be helping us fill in the forms and answer any questions and try and stop us from stressing over it all.<br />
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DLA and ESA are hard enough to apply for, but these new rules mean that hardly anyone will qualify for the higher rates. Yet bankers and politicians will sit in their massive houses with their big fat salaries and bonuses. Because I'm sure they really need them. They've never known what it's like to live on this side. <br />
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Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0tag:blogger.com,1999:blog-9067658376374442747.post-32797388330627451542013-10-17T18:58:00.000+01:002013-10-17T18:58:10.516+01:00Trials and (BUPA) tribulations The lastest is... I'm on IVs. As if that's news. I never seem to be off them lately. That said, the sight of a gripper needle and the first lot being drawn up was pretty damn satisfying, after needing these ones for a few weeks, and having to wait.<br />
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I don't usually wait - my team are very quick on the ball. If you phone up feeling shit, they can usually get you a quick appointment with the dr that day (if its early) or within the next two. And if you really, really need to start IVs, and can't wait, they're happy to start them there and then, just so you don't have to wait even longer. The difference this time, is that I wanted to go on a medical trial. I don't know how much I'm allowed to say about it (I am allowed to say I'm on the trial and such, I think its more specific things such as whether or not I believe I'm taking the actual drug, the placebo, or if I think I feel good/crap because of it) so I will have to watch what I say, we can't be narking off the powers that be.<br />
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So. I'm on the Kalydeco/vx-809 drug trial, stage 3, for DDF508. It's a double blind trial, so neither me, the drs or any of the nurses in clinical research know whether I have the actual drug or the placebo. The trial is 6 months long (providing nothing stops it prematurely) and I think after that, the next steps are the big ones. Providing all goes smoothly and the drug is as successful as they hope, I think the next move is to get it approved through the NHS to become available to other patients. And that would be pretttttty damn cool. That said, it is a rather important drug and there's a couple of rules to follow which have been a big adjustment for me. Some might find it easy (especially those with big appetites or ones who don't suffer many losses of appetites and the like) but you have to have 20g of fat with the tablets. That's morning and night, 12 hours apart (well, I've put mine at 10am and 9pm. I can't eat loads at 10pm and then go to sleep soon after. That resulted in a fairly colourful chucking up situation). The tablets are pretty colours though, BONUS! Pink and blue :D I'm so bored of most of my tablets being boring white. Can't the pharmacy even try and make it fun?<br />
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The 20g of fat thing is a varied slope for me - when I first started, in massive need of IVs, I had no appetite and was really struggling. It wasn't helped that I had no energy at all and a bitch of a cough that sounded like it was shifting cement and was 24/7 making me feel constantly sick. I started IVs 4 days into starting the trial, so to be fair, I don't think I can even tell myself whether or not I have the real or placebo drugs. By the time I would expect the drugs to start kicking in, the IVs will start to kick in. But with the state of my chest in the first place, I couldn't have put the IVs off - I was told I had to be 'well' for 4 weeks. I thought that meant four weeks at any time. This actually meant staying well and staying off all IVs and orals that wouldn't be in your usual daily routine (say, Cipro) for four weeks right up until the start date of the trial. I'd needed IVs for a couple of weeks before actually, so the state my chest got in was awful, and my dr even said I could say sod the trial and just start IVs. I decided to wait (at that point it was less than another week till I could start them) as I'd already been through several tests (hardly intensive but I did have some fun with a potentially collapsed vein and incredibly painful blood test, which isn't normal for me) and the most fun of the lot had to be the eye test that made me semi blind for half a day, but it did mean I scored a free taxi home courtesy of the research dept. That taxi bill was a tad higher than it should be after the sat nav got the bloke lost and it took nearly double the time to get home.<br />
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Eating enough for the tablets can be a struggle - who wants to eat that much fat for breakfast? Yes, I do get up at 10am, so its my breakfast, not a morning snack. I'm lazy, but I don't really give a shit. At least its not later. I've managed to sort it with porridge (with jersey milk) and a pro cal shot, which is 100calories and 10g of fat in a 30ml shot. Its essentially a milkshake. Tastes a bit like scandishake I think, but you can down this in one (or two, its hardly water) but it also gives me half the fat intake I need, which has taken half the pressure off, and leaves me with my porridge in the morning, and various stuff in late evening, say a handful of biscuits, a stack of pringles, chocolate bars, home made smoothies and hot chocolates, etc. I do worry about when my appetite tanks again (its increased since IVs started, but I'm mostly thanking that to the antisickness I fluttered my eyelashes for, ha) but I'm hoping the cocktail of drugs I'm having will help keep me feeling better for longer. I have the same I had in hospital in august, minus one dose less a day of colo and ceftaz (so those are twice a day, and aztreonam is three times) but that's only cause stronger doses of ceftaz makes the polyps in my nose pop when I cough and the nose bleeds take the piss. The amount of times that happened in hospital and drs came in asking if I'd had any head injuries. Really. <br />
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The trial isn't really anything exciting. I think they're doing the same one in various other parts of the country, but I don't know where and how many people are in it. Possibly America too. I know the company doing this is American cos the research dept were sent a fancy lung function machine. The values are different to what I get in my usual clinic lung function, probably cos its set with American values, and they seem to give lower numbers. I needed 40% minimum lung function to get onto the trial, and with the fancy machine, I got 40 on the dot. Even though it had been a fair bit higher in clinic. That said, my clinic numbers started to mirror those ones in my appointment before I started IVs. I'm trying not to worry about them, its just the exacerbation I clearly had in the summer did me in and took half of what I had, so its really hard to get it back. Going from 60% to just over 30% in a matter of weeks really hits hard and you feel it for a while. Annoyingly, it doesn't go back up that quickly. The days in the research departments are thankfully fairly sparse and far between - I've had two so far, but that included the first initial test day to see if I could qualify. The first dose day did take 9 hours though, I really wasn't impressed at having to get up at 7am in order to get ready and drive down to the hospital early enough to get a disabled space (therefore no paying, lucky really, I wasn't paying 9 hours worth of the bloody multistory!) luckily the other days won't be as long, as the pharmacy will actually have the drugs ready, rather than not having them until nearly 12 in the afternoon, several hours after we'd gotten there. I've got the date for day 15, and I think there's maybe 5 or 6 other visits over the next 6 months, and a couple of phone calls where I get to do those really fun peeing on a stick pregnancy tests; they'd really prefer you not to have a sprog during the trial.<br />
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All that aside, I've even had loads of fun with BUPA and their deliveries of my IVs. My first delivery wasn't even sent through - it never arrived, obviously, and I missed two doses. My second one came at 9.30 at night the next day, just as I was about to give up hope and start drawing up my own from the stuff I'd been given from the hospital that morning. And then I had another delivery today, of what I'm assuming is just over a weeks worth, and then I have ANOTHER BLOOD DELIVERY on the 23rd. I'm so sick of them. I don't usually use them, it's only cause my hospital pharmacy is having the yearly checks to make sure everything is working okay (or something, I didn't listen properly). I swear though, bad timing. It was only 2 weeks the pharmacy was going to be out of commission for IVs and certain other things. Of course I needed IVs then didn't I....<br />
Meganhttp://www.blogger.com/profile/10070132392649221615noreply@blogger.com0