First and last of 2018

Oh 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.)

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.

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.

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.

So.

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.

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.

I'm still waiting.

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.
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.

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.

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.

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.

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.

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.

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.

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.

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.

Long year? Long post

This 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.

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.

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.

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.

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.

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).

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.

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?

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.

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.

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.

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...

World mental heath day

So 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)

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.

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!

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.

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.

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.

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.

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.

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.

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.

Although if I did know the cause I'd never let myself do that again and maybe that's not any better.

One of those things

Hemos. 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.

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'.

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.

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.

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.

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.

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.

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'.

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'.

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.

Joy.

My annual ridiculous hospital adventure

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!

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.

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.

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.

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.

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.

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).

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.

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.

I get stressed in hospital when i have different doctors, and I'm sure you can see why!

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.

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.

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.

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.

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.

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.

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.

Personally, I'd not recommend adding constant haemoptysis to your hobbies. Its vile.

And some photos!

The picnic that was short lived! 

Poppy! She was melting on the hot days. Literally into the sofa

Me, when my lungs aren't acting up! I've given myself the week off any exercise

My tea on monday... Which didn't get eaten. Funny that. 

Yes I'm now one of those people who spam you with pet photos

My amazing view...

Self explanatory!

Clumsy 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.

I wish i could say the same! I'm very clumsy but this one was so drawn out.

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!

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".
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.

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.

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!)

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.

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.

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.

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.

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!

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!

Disability equality isn't always equal

This 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.

Case in point, my most recent experience which was the cause to write this post.

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.

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.

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?)

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.

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.

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.

(I'm currently parked across the road and on another street. Go figure).

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?

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.

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).

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.

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.

However, people surprise you.


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