Tuesday, 29 October 2013

From the other side.

People love to judge those on benefits. If there's nothing visibly wrong with you, you're branded a scrounger, and people look down their noses at you. Park in a disabled bay and get out without a wheelchair or massive limp, and you're stared and tutted at. It doesn't help with all the programmes on tv lately where it shows people on various benefits, proud of what they get from the government rather than working to earn a decent wage. And tonnes of newspaper articles that show families being given more than enough to live on, and being given huge houses with several bedrooms, and enough money to buy their children designer brands. And you also get the benefit frauds who lie about illnesses and injuries in order to get disability benefits just because they don't want to work. This all means that people with real illnesses, especially the 'invisible' kind, in which CF largely is, severely struggle to get what they deserve. 

Even before the new guidelines with the change from DLA to PIP, it was (and still can be with other benefits such as ESA) incredibly difficult to fill out the forms in a way that showed just how bad your illness can restrict you at times. I know several people who would qualify for either ESA, higher rate DLA (or both, really) and either haven't applied because they're worried the stress that they'd go through trying claim what they need, or have been refused the rate they do qualify for, purely because the people who decide are heavily uneducated in our illness(es).

Many people with CF have been told they're fit to work and don't qualify for benefits, because we don't 'look ill'. You don't see the effort it takes to get up in the morning, after a night full of coughing fits. You don't see how long we spend taking tablets, doing nebulisers, taking inhalers and doing physio every day, just to try and stay stable. All the painkillers and paracetamol taken for various headaches, temperatures and joint and lung pain. The supplements taken to try and gain enough weight due to our high dietary requirements. You don't see the time spent in hospitals for appointments and admissions, and the various clinical tests we have to undertake just so the hospital can monitor our health. The medication and equipment we drag around all day. The IV and oral antibiotics we take, antisickness, painkillers, vitamins, enzymes, various other meds for things such as reflux, liver disease, bone thinning, CF related arthritis etc. And on top of all that for some, insulin, overnight feeding or supplementary oxygen.

On a bad day, I can hardly get out of bed. Barely enough energy to get to the bathroom two doors down. Having parents, sisters or my long suffering yet never complaining boyfriend bring up medication, cups of tea and food, because I know that I just can't face going down stairs and then all the way back up again. Or even when I'm in hospital and attached to drips and oxygen, with back pain, temperatures and O2 headaches that feel like someone is trying to crack open your head with a meat cleaver. But once I'm back out of hospital, you don't see all that. I'm not perfectly healthy. I never was and never will be. At the moment, I'm obviously too well to need to consider transplant, but I'm too ill to be able to be a normal 22 year old, and definitely too ill to work. My lung function in the past year has repeatedly jumped between 35% and 60%. I get out of breath walking ridiculous distances and usually have to get carried up a flight of stairs if there's too many or there's no alternative. I use wheelchairs when I can't face walking around, like in shopping centres. My back hurts when I walk, when I stand around or when I cough when standing to the point where I have to sit down. I don't need oxygen much but have been admitted for it twice in the last year, out of three admissions. I'm on IVs every 2 weeks to 3 months, for either 2 or 3 weeks at a time, and we've started to add a third antibiotic in instead of just the two. And on top of all that, my hearing is fucked beyond repair to where I rely almost totally on lipreading. I can't understand anyone without it, I can't hear a thing without my hearing aids, this is all due to a mixture of hearing loss and nerve damage from antibiotics that I know I wouldn't be here without. I can't hear on the phone, I can't watch tv without subtitles, and I can't understand people without them speaking clearly and not mumbling. I even struggle to understand some of my closest friends and family because my hearing is that messed up.

But if you look at me now, you don't see any of that. If you sit in front of me and ask a couple of run of the mill questions that probably have nothing to do with my illness or disability, you'd never know how much time I spend trying to stay well, you'd never know how housebound I really will be if you took away my mobility car. It's actually ridiculous to say that you can only qualify for higher rate mobility of PIP if you can't walk 20 metres. If you asked me to walk 20 metres up a hill, up some stairs, or on my worst day, a flat surface, I wouldn't reach the finishing point. If you asked me to walk 20 metres with a load of food shopping, I would genuinely struggle and probably not get to the point without someone helping. If you took away my car, I'd rely solely on people driving me. I wouldn't be able to get the bus, because whilst the bus stop is at the bottom of my street, you still have to remember that the nearest bus stop to your destination is still usually a ridiculous distance away. The nearest one to my hospital is at the bottom of a hill, where if I walk it, even feeling well, I have to stop and sit several times.

But again, ask me to fill in a vague form, or an unfairly judged medical by someone who doesn't know what cystic fibrosis is, then they'd take away my benefits without a second glance. They'd tell me I'm fit to work and I should toddle off to find a job. I'd love to work if I could. But there's a lot of irony in taking away my main source of travel and then telling me to go get a job, illness aside. 

Plus, I do really feel for those who try and help us get what we need. Our CF social worker has told me he has his work cut out when the changes come to our area, when they reassess those on DLA and change us to PIP, because he'll be helping us fill in the forms and answer any questions and try and stop us from stressing over it all.

DLA and ESA are hard enough to apply for, but these new rules mean that hardly anyone will qualify for the higher rates. Yet bankers and politicians will sit in their massive houses with their big fat salaries and bonuses. Because I'm sure they really need them. They've never known what it's like to live on this side.

Thursday, 17 October 2013

Trials and (BUPA) tribulations

The lastest is... I'm on IVs. As if that's news. I never seem to be off them lately. That said, the sight of a gripper needle and the first lot being drawn up was pretty damn satisfying, after needing these ones for a few weeks, and having to wait.

I don't usually wait - my team are very quick on the ball. If you phone up feeling shit, they can usually get you a quick appointment with the dr that day (if its early) or within the next two. And if you really, really need to start IVs, and can't wait, they're happy to start them there and then, just so you don't have to wait even longer. The difference this time, is that I wanted to go on a medical trial. I don't know how much I'm allowed to say about it (I am allowed to say I'm on the trial and such, I think its more specific things such as whether or not I believe I'm taking the actual drug, the placebo, or if I think I feel good/crap because of it) so I will have to watch what I say, we can't be narking off the powers that be.

So. I'm on the Kalydeco/vx-809 drug trial, stage 3, for DDF508. It's a double blind trial, so neither me, the drs or any of the nurses in clinical research know whether I have the actual drug or the placebo. The trial is 6 months long (providing nothing stops it prematurely) and I think after that, the next steps are the big ones. Providing all goes smoothly and the drug is as successful as they hope, I think the next move is to get it approved through the NHS to become available to other patients. And that would be pretttttty damn cool. That said, it is a rather important drug and there's a couple of rules to follow which have been a big adjustment for me. Some might find it easy (especially those with big appetites or ones who don't suffer many losses of appetites and the like) but you have to have 20g of fat with the tablets. That's morning and night, 12 hours apart (well, I've put mine at 10am and 9pm. I can't eat loads at 10pm and then go to sleep soon after. That resulted in a fairly colourful chucking up situation). The tablets are pretty colours though, BONUS! Pink and blue :D I'm so bored of most of my tablets being boring white. Can't the pharmacy even try and make it fun?

The 20g of fat thing is a varied slope for me - when I first started, in massive need of IVs, I had no appetite and was really struggling. It wasn't helped that I had no energy at all and a bitch of a cough that sounded like it was shifting cement and was 24/7 making me feel constantly sick. I started IVs 4 days into starting the trial, so to be fair, I don't think I can even tell myself whether or not I have the real or placebo drugs. By the time I would expect the drugs to start kicking in, the IVs will start to kick in. But with the state of my chest in the first place, I couldn't have put the IVs off - I was told I had to be 'well' for 4 weeks. I thought that meant four weeks at any time. This actually meant staying well and staying off all IVs and orals that wouldn't be in your usual daily routine (say, Cipro) for four weeks right up until the start date of the trial. I'd needed IVs for a couple of weeks before actually, so the state my chest got in was awful, and my dr even said I could say sod the trial and just start IVs. I decided to wait (at that point it was less than another week till I could start them) as I'd already been through several tests (hardly intensive but I did have some fun with a potentially collapsed vein and incredibly painful blood test, which isn't normal for me) and the most fun of the lot had to be the eye test that made me semi blind for half a day, but it did mean I scored a free taxi home courtesy of the research dept. That taxi bill was a tad higher than it should be after the sat nav got the bloke lost and it took nearly double the time to get home.

Eating enough for the tablets can be a struggle - who wants to eat that much fat for breakfast? Yes, I do get up at 10am, so its my breakfast, not a morning snack. I'm lazy, but I don't really give a shit. At least its not later. I've managed to sort it with porridge (with jersey milk) and a pro cal shot, which is 100calories and 10g of fat in a 30ml shot. Its essentially a milkshake. Tastes a bit like scandishake I think, but you can down this in one (or two, its hardly water) but it also gives me half the fat intake I need, which has taken half the pressure off, and leaves me with my porridge in the morning, and various stuff in late evening, say a handful of biscuits, a stack of pringles, chocolate bars, home made smoothies and hot chocolates, etc. I do worry about when my appetite tanks again (its increased since IVs started, but I'm mostly thanking that to the antisickness I fluttered my eyelashes for, ha) but I'm hoping the cocktail of drugs I'm having will help keep me feeling better for longer. I have the same I had in hospital in august, minus one dose less a day of colo and ceftaz (so those are twice a day, and aztreonam is three times) but that's only cause stronger doses of ceftaz makes the polyps in my nose pop when I cough and the nose bleeds take the piss. The amount of times that happened in hospital and drs came in asking if I'd had any head injuries. Really. 

The trial isn't really anything exciting. I think they're doing the same one in various other parts of the country, but I don't know where and how many people are in it. Possibly America too. I know the company doing this is American cos the research dept were sent a fancy lung function machine. The values are different to what I get in my usual clinic lung function, probably cos its set with American values, and they seem to give lower numbers. I needed 40% minimum lung function to get onto the trial, and with the fancy machine, I got 40 on the dot. Even though it had been a fair bit higher in clinic. That said, my clinic numbers started to mirror those ones in my appointment before I started IVs. I'm trying not to worry about them, its just the exacerbation I clearly had in the summer did me in and took half of what I had, so its really hard to get it back. Going from  60% to just over 30% in a matter of weeks really hits hard and you feel it for a while. Annoyingly, it doesn't go back up that quickly. The days in the research departments are thankfully fairly sparse and far between - I've had two so far, but that included the first initial test day to see if I could qualify. The first dose day did take 9 hours though, I really wasn't impressed at having to get up at 7am in order to get ready and drive down to the hospital early enough to get a disabled space (therefore no paying, lucky really, I wasn't paying 9 hours worth of the bloody multistory!) luckily the other days won't be as long, as the pharmacy will actually have the drugs ready, rather than not having them until nearly 12 in the afternoon, several hours after we'd gotten there. I've got the date for day 15, and I think there's maybe 5 or 6 other visits over the next 6 months, and a couple of phone calls where I get to do those really fun peeing on a stick pregnancy tests; they'd really prefer you not to have a sprog during the trial.

All that aside, I've even had loads of fun with BUPA and their deliveries of my IVs. My first delivery wasn't even sent through - it never arrived, obviously, and I missed two doses. My second one came at 9.30 at night the next day, just as I was about to give up hope and start drawing up my own from the stuff I'd been given from the hospital that morning. And then I had another delivery today, of what I'm assuming is just over a weeks worth, and then I have ANOTHER BLOOD DELIVERY on the 23rd. I'm so sick of them. I don't usually use them, it's only cause my hospital pharmacy is having the yearly checks to make sure everything is working okay (or something, I didn't listen properly). I swear though, bad timing. It was only 2 weeks the pharmacy was going to be out of commission for IVs and certain other things. Of course I needed IVs then didn't I....

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...