Saturday, 21 September 2013

New issues.

As if I needed anything else going on. I have a new problem. I don't even know exactly what it is, but I keep trying to put it into words and talk to family/close friends about it in the hope that talking about it would elevate the apparent massive weight I seem to be holding over myself, but so far I haven't noticed a difference.

I seem to be having some issues with swallowing food. I don't know where it's come from. I lost my appetite back in july just before my admission, and I felt sick all the time then, but I think it was from constant coughing so I just went off food. This time, my appetite has taken a hit (I'm fairly sure I've got another infection but the gremlins in my chest keep changing back and forth every day so it's hard to tell from that alone, although I think I do need IVs and it'd be wonderful if that was the ultimate fix for all) and I'm not eating as much as I usually do. Highly irritating, I love food, if I have food I really like, I'll happily eat as much as I can or until I've scraped the plate clean, and probably still have room for a few cheeky snacks in a bid to add up those calories.

At the moment, I can't even finish one meal. I can hardly get round that first mouthful. The main problem seems to be that I feel sick with food in my mouth, and actually swallowing the food is a massive struggle. Worse if its food you have to chew cos I put it off so long it just seems even more impossible to swallow it. But the odd thing is, once I've swallowed the food I'm fine. But it happens again with each mouthful. It's so frustrating. I'm hungry, I want my food, I want to gain weight. Jeans I wear every day are starting to hang off me and I'm so scared. I can't lose any more weight without probably being forced into having NG or a new button - its already been brought it a multitude of times before, when my weight was more than it is now, simply because even when my appetite is amazing, I still don't gain anything.

I think the threat of another button is sitting deep in my mind, along with worries of my chest, and that this loss of weight and any further loss is going to help nothing. After suffering a massive drop in july/august, I wanted my lung function back up to my highest numbers and knew that a big part of this would be weight related. I'm more than a stone and a half away from a good healthy weight, and it seems like such an unattainable target. I'm happy with every pound or tiny morsel I put on, and know it all contributes. I'd give anything to be a good 10kg heavier than I am now. Last time I was weighed I was 40kg, scares the shit out of me.

It's odd, its not like an eating disorder, its not like im physically trying to stop myself eating or lose weight. I hate that I'm thin, I hate that I'm getting tired doing nothing and that you can see my ribs, my shoulders stick out horribly and its goddamn impossible to find a pair of jeans that fit. I went through so many shops the other week, trying on various size 6's just to find what size I am so I know. In next, you could have fit a fucking watermelon in the jeans along with me. In a petite size 6. Why can't all shops just use the same fucking sizes?!

I'm getting scared and worrying myself too much, I know this. It would be so easy to switch off my brain. I try to distract myself with tv or whatever when a meal is in front of me in the hope that I don't realise I'm swallowing food. People say, well just don't think about it, don't think about what's getting you scared. If I could do that, Im sure I wouldn't have half of these problems. I get upset that I can't finish a meal. I can hardly eat half of it. I'm getting upset and angry at myself, whilst everyone else is trying to be nice and look after me, saying well done for eating half of that, as opposed to saying, there's still half left on the plate. I feel like I'm letting everyone down cos I don't know what's wrong with me and I don't know how to stop it. I don't understand how something I've done every day for my entire life has suddenly become the most difficult thing to do. I just want someone to tell me what this is and give me a magic fix so I can enjoy my food again. I spend all day worrying over meals. It takes me so long to finish one and finally stop stressing over it, that it's then time for the next one. In the rare times I've got nothing in front of me and no meal to worry about for a couple of hours, I can almost feel normal again, but it all comes back once I'm back in front of a fucking plate.

We're phoning the hospital on monday, most likely aiming for the dietitian. Although I can't imagine them being sweetness and light about it - dietitians have a horrible ability to not understand, even less than the average human. You can eat a 3 course meal in front of them, lick the plates clean, and they'd still be convinced you're not eating enough and you need to do more. She'll probably suggest more supplements to start. They're horrible. I feel so full with one that it's hard to time them. You can't have them when you're full, you feel sick, and it lasts for ages. You can't have one before a meal, you're too full for your food. I just need a fairy godmother to fix this stupid swallowing mental block I have. And then I can get back to normal.

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. 

Long year? Long post

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