Thursday, 25 September 2014

To work or not to work

Once 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.

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.  

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.

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.

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.

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.

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.

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.

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?

Monday, 25 August 2014

Kids with Cameras

If 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.

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.

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.

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.

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.

Monday, 11 August 2014

I think a tumbleweed just passed by my blog

Another 4 monthly update *twiddles thumbs* Poor neglected fucker.

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.

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.

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!

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.

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.

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. 

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.

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...

Tuesday, 1 April 2014

The past 6 months

I haven't actually written a blog since mid of October last year. So there's a good nearly 6 months to catch up on.

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.

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.

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!

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.

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).

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!

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.

Tuesday, 25 March 2014

Kerry xxx

This isn't a blog I wanted to write.

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.

But that never happened. On 21st March, Kerry passed away, surrounded by her family, fiancé, and puppies. She was 23.

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.

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.

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.

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.

Josh has also set up the Kerry Alex Thorpe Trust on facebook -

I know she was friends with both Clare and Loz, so I hope they've all found each other wherever they are xxx

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 w...