Friday, 13 September 2013

Trying to grow up

I do say 'trying'. Me and my boyfriend are currently trying to look at the idea of living together. I've tried to in a multitude of ways over the last year with different people - my sister and my best friend. The main problem that came along here was money. And its the same problem that comes up this time too.

How on EARTH are you meant to live on next to nothing?! Looking at everything that goes in compared to what goes out, money wise, I'm fairly sure we'd be left with nothing. And I'm a bit grumpy that after everything it took to get ESA (but miraculously getting it without a medical or assessment hassles) I'd probably lose that. Did you know that if you live with a partner who earns over 20 quid a week, whatever they earn is taken off your ESA? Cheers government. DLA doesn't go far. My ESA will be 0, I have no idea if he'd get carer's allowance or if we should swap from ESA to income support (Is there an income cap like on ESA for this? I've looked everywhere and cannot find a thing) I'm incredibly confused about council tax, and council tax benefit. It's the only thing I couldn't factor in when trying to do the sums, but apparently it's a nasty amount and with everything, I don't think we'd have much left at the end of the month, yet alone week, and if it was more money going out, then fuck it. I give up.

We spent a large chunk of last Tuesday going between the benefit adviser and the jobcentre (and the condescending twat of a woman who worked there deserves a slap for the way she spoke to me, yet spoke normally to John) and my sister also rang my social worker today to find out a few things. I'm meeting him at the beginning of next month, but it looks like some info I've been given is wrong, which is confusing the fuck out of me. Like with the earning over £20 on ESA rule, apparently that's more down to hours too and I'd lose it despite the fact he works under the necessary 24 a week. So hopefully this will be clarified with everyone by the 4th.

I want so badly to move out. People probably think I'm mad, why move out and pay your bills etc when you live at home. At the moment, I'm sharing a cramped room with my 26 year old sister, and I currently buy most of my own food and do my own washing and tidying up anyway. I half live at Johns, I half live at home. I have no space to call my own that isn't my fucking car, I have nowhere to go for peace and quiet. I never cook because everyone deems it necessary to congregate into the kitchen and then people have to pick on what you're doing. And I'm admittedly a bit of a neat freak. The rest of my family aren't. If you're a tidy person who lives with a messy person, imagine the stress I go through every day with stuff I'm either too tired to put away, have nowhere to put things, or its stuff you're not allowed to move (i.e. the kitchen table which is covered with various papers and work sheets. These all go in the bin when tidied by my mother, but I'm not allowed as I'd throw out that one important thing.) My 13 year old sister is a bit (ha, a bit...) of a professional room destroyer with all her shit too.

Even if I did get a place in the town I want, I wouldn't go out much (I don't any way) but probably even less so seeing as one of my best friends who lives there has managed to get herself a job in north yorkshire and will be moving there. I'm happy for her but will miss her a tonne load. I almost feel like I'm begrudging people who move away, because I don't think I really could. I rely on people too much, mostly for my hearing, but I could never just move away, even if I stayed close enough to the hospital, and just start on my own. I'd trip down the stairs or over my own feet before the first evening for a start.

The rambles of a girl, right. I'm just blabbering now. Probably because I don't know who to say this to. I can't say it to her, it's horrible and selfish. She doesn't read this (as far as I'm aware, only cfers and the like read this and when it's posted to facebook its hidden from people who I'm not ready for them to read... despite having this for probably 5 years now). so I do feel like I can write a bit more freely knowing that the people you're worried who would judge what you write won't read it. Sort of like how you can keep it hidden from family then write the truth about how shitty you feel just to get it out there but not worry them at the same time. 

And finally. I was asked by my doctor if I wanted to take part in the Kalydeco and VX-809 (I think?) trial. Now this was just to ask if I'd like to see if I'm eligible. I don't know yet - I went for the tests yesterday (after umming and ahhing like a moron) and they did several, including basics like lung function, sats, temp, heart rate, weight, height, blood tests and an ECG. I've also got to wait for them to organise an eye test too, I was asked various questions like do anyone in my family have glaucoma or cataracts so I assume its to check everything's in working order. Once I've had that then they'll make their decision on whether they actually want me in the trial. Then they either give you the real drug or the placebo. It's a 6 month trial but providing everything went okay, my doctor seems to think the drug could possibly be available to everyone within 2 years. Seems a long time to wait for some, especially for those who feel they need it now, or are on the transplant list etc (you can't take it once you've had a tx though) but in the long run, a 2 year wait is necessary for those who can take this drug in the future to have a much easier life where CF is concerned. 

Whether I get on the trial or not, blood takes in the immediate future may be interesting. I never have problems usually. Either I've got good veins, or I know some bloody skilled nurses and drs, as they always get everything they need in one go. But when the nurse tried to get a mere 3 vials, my one trusty vein wouldn't co-operate. It was incredibly painful and I actually had to ask the nurse to stop and just try somewhere else. This vein wasn't gonna give us anything and damn it was fucking hurting. I've even got an impressive bruise. Although I don't blame the nurse at all - she was lovely about it, apologised and got everything from another vein in my hand with no problem. I think it was just because I hardly need blood taken (I don't have aminoglycide IVs and they only take blood in admissions, annual review or if there's some need to, like a dietitians request to check my sugars more thoroughly) but this vein was used 3 times in august when I was in. Speaking of that, I got home after the full two weeks in, and I did feel better. I've got a bit of a cough now which is irritating that nearly double the amount of IVs I was getting still didn't seem to last any longer than my usual amount. 

My doctor did confirm that my LF had gone to the 30%s. It's back to 40% now according to the machine from yesterday, although this was a computerised one and Im used to the old school machine with the tubing and everything, so it took my average instead of my best attempt. 40% is the lowest allowed lung function to be accepted onto the trial so I've still got my fingers crossed. You have to have a lung function of between 40 and 90%, so there's room for improvement, but also a tiny bit of leeway as your LF can drop a bit, so it's dangerous to do it with anyone iller. I'm still hopefully improving from my drastic drop of basically halving my LF in a matter of weeks so I'm hoping that's the last time I see 40% and everything will be higher from then, and I'm trying to improve my weight and do exercises to improve it - it's hardly going to get better whilst I sit and watch tv...

Aaaaand with that, I'll let you escape. I have a massive habit of not writing for a while and then trying to rival war and peace. I really need to work on that. 

1 comment:

Gem said...

It's so hard trying to be an adult. Money is an absolute fucker of a thing and causes far many more problems than it solves. That's ridiculous about the ESA. No-one can live on that little an amount. When you're ready to move out and just can't see a way around it, it must be massively frustrating.

I'm a neat freak too and my mum just isn't. I then knacker myself out trying to keep everything tidy and get pissed off at mum and it causes so many arguments.

Not having somewhere to call your own personal space must be quite unnerving. You will do in time. There has to be a way around this for you- loads of people must have been in the same situation you are now, it's just finding out how they got round it.

Blimey, that was all very serious for me.

WILLY!

That's better

lovelovelove xxxxxxxxxxxxxxxxxxxxx

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