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...