Monday, 29 December 2008

Christmas cheer.

Had a great Xmas, favourite present was a digital camera that I totally didn't expect (A 'bridging camera' apparently, not 'look how small this thing is, la de da).

Anyhoo, I went to the Dr today for a check up, and typically, whilst I'm there, my chest doesn't rattle of any sort, so I can't really explain to the Doc what its like, and he said today 'Well, I think you're pretty healthy for now' which, yes, is a great thing to hear, but I certainly don't think it while I'm rattling away. Which incidentally I have done since I left the chest clinic. Plus, there's that annoying supposed-to-be-a-stomach-muscle thing, which also disappeared as the hospital appeared into view. Bugger.

I did get some other good news that I'd gained weight. Yey! So far, for the past two visits I've gained a kilo on each one, which is good for me, considering the whole crap appetite, and the fact that CFers supposedly burn calories twice as fast and stuff like that. As I was saying, next time, if I've gained weight again (trust me, over the next 5 weeks, you'll find me covered in chocolate wrappers) I'll have this irritating PEG out, which is a gastrostomy tube that, instead of going through my nose and down my throat (an NG), goes directly into my stomach, which I used to be fed through overnight. That feed stuff was disgusting. What is weird is that when they do (and they will) take out my PEG, it leaves a small scar, obviously, but as its round and about 3-4 inches away from my actual belly button, it'll look like a second belly button. That, frankly, sounds weird to me. It'll keep in match with the whacking great scar I've already got across my stomach though (When I was born, I had the menocum illeus surgery. Lovely. That scar goes all the way across my stomach, and freaks the hell out of my friends when I show them. Teehee.)

I do have one rant though. On Tuesday I had to go to the Freeman hospital where they have the Ear, nose and throat dept, so I could get my 6-monthly ear check up to make sure I haven't gone more deaf (Is that even possible anymore?!), and we find out that the Dr is there, she just isn't going to see me. Uh, why? We were meant to see her about a month ago but the hospital phoned up to say that the Dr wasn't going to be in. So we turn up for the appointment after driving the obligatory 30-40 minutes from home to the hospital, through some of the busiest routes through Newcastle, and when we finally get there, and wait the typical what feels like 3 hours in the waiting room, I eventually get called, and then told that the Dr won't be seeing me. Well, I say I was told but the truth was that the nurse only spoke to my dad. I may be mostly deaf, but I'm the patient and don't appreciate it when people refuse to speak to me because I'm deaf. And, is there a reason that prevented them from picking up the phone and dialling 6 numbers? That really pissed me off, and it was an entire morning wasted when I could have been doing anything else.

The hilarious thing, is that all over the hospital are posters saying 'so and so many patients didn't turn up for their appointment last month' and yet on Tuesday, there was about 10 or so patients, possibly more, that travelled all the way to the hospital, waited patiently, and then was told that the Dr wouldn't see us. Then, of course had to spend 10 minutes in the line for reception to get a new appointment.

Wednesday, 17 December 2008

Quel est le point!?

I never understand why, after I've had an impressive coughing fit, people, namely my friends or nosey as hell teachers, ask if I'm OK, or if I need a drink.

First off, half the time the coughing fit is because the water goes down the wrong way (constantly!!) but when I'm really coughing, everyone stares at me like I'm a complete loon, but A) its not my fault, and B) if I could stop it, I honestly, honestly would. But every time, someone will ask 'Are you OK?', and I'm sick of giving the exasperated response of 'Yeah' as I can't be bothered to go into it and they know perfectly well, that its a ridiculous question anyway.

At the moment I'm attempting revision (And failing!!) as I've got A2 level exams in January that I need to pass so that I can get high enough grades to get into college. That is, if they ever send me an offer. We have to send our forms through a site called UCAS now, as its all done there and you can apply for multiple courses/colleges. UCAS still hasn't sent my form through yet, even though I sent it off more than a week ago. I need to know! I can't stand the suspense! The exams I'm taking are for Health and Social Care, and as Art doesn't have any written exams, I usually end up with about 5 less exams and everyone hates me while tearing their hair out with revision for another two or three different subjects (H+SC is a double, it counts as two subjects).

So, college. I'm applying to Newcastle College, which has its own art building, and I want to do photography. It’s the only thing I have EVER considered as a job in my life. And that was only a year ago or so. It’s so weird, but if we'd never been given the offer at a place called Venture Photography for that photo shoot and photos, I probably never would have thought of photography. But I've come to realise I love it.

The handy thing about applying to Newcastle is that it's only a 30 minute drive from my home, so I can live at home and not have to pay an extra 6 grand a year to live on campus. Plus, Newcastle is where I go to hospital, as it’s got its own chest clinic with CF nurses and Doctors. I guess I was lucky to automatically be living relatively near a CF hospital before I was even born.

Friday, 12 December 2008

Biting your tongue.

I hate CF. It just seems to get worse. The past couple of weeks, my chest has been rattling. Yes, rattling which sounds like a cross between Darth Vader and a rattlesnake. Its irritating as my chest rattles inside too. I'm worried with each rattle it could be damaging my lungs just a bit more. Plus, rattling is usually a sign of a chest infection. Or rather a new one. Which shouldn't be there, as I've just had a two week course of IVs which finished yesterday (Freedom!) which means that I should be better. Yes, I'm coughing just a tad less, but its not as horrendous as it is when its bad. Unfortunately I had a cold for the majority of my IVs, which basically made them almost useless.

With the IVs came a few interesting side effects. I never used to get side effects from my IVs, but I seem to be getting them now for two reasons: A, the dose has been upped up, and B, one of the antibiotics are still relatively new to me; Colistin. (In a way; I'd had it before in a nebuliser, but in IVs, its more frequent and its a lot stronger.)

So, these 'interesting' side effects included coming in the hilarious form of drunk walking. And no, I'm not joking. Ive heard some weird side effects in my time, but when the Doc first mentioned a common side effect as drunk walking, I thought he was just joking. But no. I had minimal control over my legs in a way. Its sort of like when you stand up and get a head rush, and you stumble. Only it continued into all my walking so I'd end up walking in a diagonal line when I was trying to walk in a straight line. Plus the inevitable walking into walls which some of my friends found hilarious. This side effect was only there for the first few days, but last time I had IVs, which was the first time I'd had colistin as an IV antibiotic, I was a complete mess the entire fortnight. I also had a weird headache for a week or so - it felt like my head was being squashed from all angles. Plus a tingly mouth and tongue (which, by the by, is not a pleasant sensation), and a lot of nosebleeds (I had no idea why till my mum found in her medical drug book that it was from an increase of ceftazadime).

Basically, it wasn't fun.

Wednesday, 3 December 2008

Karma has a warped view of... karma.

If people knew me, they'd probably not laugh at me when they notice I didn't hear something, for example, when someone calls for me and I don't notice. If they knew me, they'd know full well that if they laugh and I notice, I'm very tempted to go over to the arsewipe(s) and punch them there and then right in the schnoz. But, unfortunately, I give off the impression of a (slightly grumpy) small, blonde kid, who is clearly younger than she'd like to appear - which is good when you're older, but not quite so great when you're 17. Also, as I don't exactly go parading around in my karate suit, they have no idea I was a blue belt before I jacked it in. (Long story, involving some sadistic karate teacher who would only seem to let the guys go to grading. Basically, if I was a guy, I would have had my brown belt ages ago. So I had a perfectly good excuse for getting sick of the place).

Anyway, back to where I started. Last Thursday I went to the hospital for more IVs (Joy unbounded, I just can't stop coughing). I was sitting opposite some woman, who was with her two daughters, and after the youngest daughter (who had CF) went off to see the doctor or something, the nurse called for me, and when I didn't hear her, the two women started to snigger.

Now, I think this is incredibly rude, plus, seeing as their daughter has CF as well, she could also end up with her hearing affected by antibiotics. (Well, if karma gets a shift on, yeah). At hospital, its the last place you expect to be laughed at because of something medically wrong with you. At school I got used to it (And the threat of being punched in the gob soon took effect) but I really hate how people will laugh at things like that when they're not even my fault.

But basically, I thought it was time for another hearing rant. As far as I'm aware, people with CF who have had their hearing wrecked by antibiotics are at least in their 20-30's, or if they're my age, they're on constant antibiotics. Yes, I know I am too, but I mean constant as in never actually being off IVs. If you ever saw that channel 4 programme about a boy called Alex, who was 17 with CF, he mentions how he has a significant hearing loss because of the constant stream of IVs, as he basically never had them off, yet my hearing got wrecked when I was about 9 -10, when I was having IVs about every 3 months, minimum. Every time I come across some CF person who's hearing isn't wrecked, or at least not as bad as mine is (I haven't come across another CF person who wears hearing aids) I get a bit pissed off. Quite rightly too.

Speaking of karma, I mentioned in the first post that I made, that I haven't found a reason why I have CF, or a reason why I'm so ridiculously deaf (Ironically enough, my whole family has bloody marvellous hearing. Typical.) I really want to know why these things have happened to me as I tend to live by the phrase 'Everything happens for a reason' (Yet when I think about it, there's so many significant things that have happened without a proper reason). I thought, there must be a reason why I've got CF, but if its a karmic reason, what the frig could I have done as a foetus to deserve something as crap as CF?

Swearing on an ultrasound springs to mind...

Tuesday, 18 November 2008

Reasons to listen, Ironically enough.

What exactly do the 'lab guys' do all day? Where is that gene therapy for Cystic Fibrosis that was promised? Hell, even some drugs that would actually get rid of the chest infections that I have permanently would be welcome. Oddly enough, I don't think that money from various charities for research for cures are actually going to the expected cause. I think they must be spending it on lifetime supplies of kit-kats. Either that or they just spend more time trying to create a Dr-Who type time machine than searching for something important. No one really cares about what is inside the atom, or what force is exerted when you drop an apple (although try telling that to a teacher in year 11 without getting detention.) What I really want is to get better. I would love do one of them charity runs for CF one day (maybe even put it on my 'things to do' list) if I wasn't worried I'd be completely puffed out within the first 5 minutes of gentle jogging. Unfortunately it's not like I've got much choice in how well I am. The bastard that is the CF gene seems to be a pretty damn dominating one.

Apparently they're trying to regrow the little hairs in your ear if you've got damaged hearing. It sounds a bit funky, but I know that its the vital part of hearing and that's what got wrecked in me. I read an article ages ago on how it's research on how to hopefully fix the hearing of people who have lost their hearing to things like medication. Now chop chop, I'd love to listen on an I-Pod one day, maybe even watch a TV programme without subtitles. Do you know how embarrassing it is to try and make up an excuse to a mate when they offer you the other earphone so you can listen on their I-Pod with them?! Of course my closest mates know I'm deaf (obviously, or else they'd have to be pretty dim not to notice) but with others, I stick with the excuse that earphones give me a headache. And I get a weird look for that. But hey, as long as they don't find out the truth. People just think I've got crap hearing (and yell at me, dammit) they don't know about the hearing aids, and I don't mind that, as when you think 'hearing aids' you automatically think '70 year old'. So, when they do get that hearing cure all up and running, I'd love to have my first proper phone conversation for the first time in years (probably since I was about 8 or 9).

On the bright side, (until that time comes at least) I've got a very slim chance of developing one of those posh 'telephone voices'.

Thursday, 6 November 2008

Solved the riddle.

Cracked it. It was the tablets that I took to fight off the MRSA that had me feeling like I'd done 5 rounds with Mike Tyson. It's even more frustrating that I found out I didn't even need those tablets - the Doc showed me the test results that said I'd already fought off and gotten rid of the MRSA on my own before I'd started the tablets, most likely because of the antibiotics I already take, but had to continue cause I'd already started them.

Good thing is I took the last one this morning, so I can finally sleep, eat, stop feeling pukey all day and actually get some work done. Yesterday, half way through art, I couldn't do anymore work, could barely breathe and when I stood up my friend needed to grab my arm to stop me meeting the floor. It must have been a panic attack or something, as I was so ill yesterday, shattered and scared about the fact every time I tried to go to sleep, I felt like my breathing almost stopped. I don't know how I functioned over three days with less then 4 hours sleep in total.

Right now, I'm actually wondering if anyone reads this. I seriously doubt that it's anyone I know as they don't do the blog stuff. But if they did see this, I'm sure they'd recognise that it's me (without looking at my name on the profile) as my display picture is one we took a year ago whilst messing about one lunch. I had the choice of the star fingers, double star fingers, or five shoes put together in the middle. Yes, I know that sounds ridiculous, but you'd be surprised how amazing that picture looked and how amazingly artistic a random picture like that can look, when a bunch of 16-year-olds are pissing about with a camera.

I don't really have much else to say after two or so days. Off I pop then.

Tuesday, 4 November 2008

So why can't i sleep?

I just don’t seem to be able to sleep at the moment. I don’t even know why, which is probably not helping the sudden development of insomnia. But it’s not like I’ve got a million things running through my mind, or if I drink coffee right before I go to bed (I hate coffee, in true British style, I prefer tea, but still, the last cup of tea I had last night was about 5.30pm)

It’s incredibly frustrating that over the last two nights I’ve probably had about 5 hours sleep in total. It would be ironic that my insomnia was caused by the fact I have insomnia. Although it’s not usually this bad. Maybe in the night just when the holidays end, when I’m back to school the next day, its difficult getting enough sleep, but maybe because I’ve usually been asleep till 1pm earlier that day. But it’s just odd that I’m awake at 4am still checking the clock to see how much time I’ve got to ‘sleep’ before I have to be up at the crack of 7am.

As I type this, I’m shattered, but even when I do try and sleep with my head on the desk, I still can’t sleep. Annoyingly enough, I got up for school like I always do, and when I do get here, I find out that my teacher who is meant to take my 2nd and 3rd lesson (I have a free for first -which is when I’m writing this) is off, so there was no point in even coming into school today, as thanks to 6th form and my lovely combination of ‘Frees’, I’m usually out of school by 12.30 and setting off on that 30 minute walk to my sister’s house as I live a good 30 minutes drive from the school. But no one even offers me for a lift to my sister’s, which is annoying, as at the moment, I have a rogue stomach muscle which feels like a stitch. I think I mentioned this in my last post. Anyhoo, the little bugger is still there, painful as ever, and making me catch my side in pain when I trek across the art room. OWWWW!

Hey, check it out, my first follower. Yey!

Friday, 24 October 2008

Crap expectations.

After starting this blog, I admitted to myself that I don't really have too much to write about, unless you want to hear about how my day at 6th form went. Haha. But this week, I've got a few things that have pissed me off and deserve a rant.

First of all, on Wednesday, I managed to get food poisoning. That is the last time I ever buy food from an open salad bar type thing. So Thursday morning, feeling absolutely like crap, (skipping a few gory details, I'm not really one who talks about that much) my dad and mam say I should go to the hospital, in case this is some bad chest infection. So, off we go to the hospital and the doctor fishes out my test results from when I was last there (appointments every 6 weeks, the joy) and comes back in the room to say, yes I do have a chest infection, although the food poisoning is just food poisoning, nothing to do with the infection. But, she also says that I have MRSA. What?! I thought that was for old people confined to hospital who have the Grim Reaper twiddling his thumbs in the seat next to their beds (cuz he's such a patient bastard). I never thought I'd get it, although after finding more about it, you can get it if you take a lot of medication, constantly (raises hand) is often in hospital (and again) and have an illness which you are subseptical to infections (need I bother saying it). Not fun. The few of my mates who I told at first thought it was a very poor joke. Sorry guys, I'm really not joking.

I was happy to know healthy people can't get MRSA, and if they do, it just stays on the skin, harmless to them, although they should wash their hands if they see a sick person. Obviously.

So I'm now on two more tablets to my lovely cocktail I already take. And they're the size of fecking bricks. Really. I think they have a bet on at the pharmacy to see how big the bloody tablet will be before I do choke. Well, they've got to do something to while away the long hours.

I've also got this weird stomach muscle near my right hip, that, when I've got a new chest infection (translation, when I'm coughing like a loon, non-stop) it comes back again, and it feels like I've got a mammoth sized stitch that just won't go away. My mum thought it was a hernia at first. You should have seen my face then. Shitting a brick probably didn't quite cover it. But alas, no, its not a hernia that can be fixed with a nice quick surgery (although there's nothing quick about surgery for me, I get so oxygen deprived I usually get the joy of an extra few nights in the damn place) its a bloody stomach muscle that won't go away and will come back every time I have a naff chest infection that is a right cocky bastard and refuses to bugger off. Ow pretty much covers it if I have to walk more than 20 feet.

Try as I might, I just can't sound interesting. So I'll just aimlessly wander off. Besides, Mock the Week is starting, and I bloody love that show..

Friday, 17 October 2008

The real problem with reality is that there's no backround music.

How do you start this kind of thing? Do you need to introduce yourself? Just start slap bang in the middle, as if you've been doing this for years? Or do you start with a reason? Maybe I'll do that. With a bit of my history dashed in. There's no point in banging on about something that no one knows about. Although I do feel inclined to mention, that many a time, I start a conversation (or in this case, a blog post) on one topic, and end up talking about something completely unrelated. Well, that's just me.

So, back to my original point, and I do mean original in the sense that I was going to start this entire blog off on. I know how people always say you shouldn't take things for granted. Which has irritatingly enough become true to me. Because of my cystic fibrosis (look it up yourself, I'm lazy) I lost my hearing due to the fact I was constantly bombarded by an avalanche of different meds to keep it under control. The doctor never said anything about loosing my hearing, as it was such a rare side effect that they never thought it would happen to me while I was about 8. Hahaha. Wrong. So I'm majoritally deaf and I really hate it. I do try and keep it on the down low but I suppose basically everyone I meet figures it out because I have to ask about 5 times what their name is. And I still don't seem to understand what they say. See, I'm not just deaf, it’s as if something has gone missing in the circuit of hearing, and I have constant ringing in my ears and when people talk, I have to really strain to understand. It’s just not fair. Everyone takes their hearing for granted; I just don't see why I had to loose mine. Nine years on and I still haven't really got the hang of it. I really hate it.

But this is not the only little gem of crap that I've got from CF, I also found out how I'll need a lung transplant sometime in my life. There's no way to tell when. May be in my 20's, 30's or 40's, depends on how long I can stick it out for. This, practically learning my freakin mortality, scared me shitless, yet I can't talk to my mates about this because they just don't want to know. Yes, I know it’s kind of a strange thing for a 17 year old to talk about, yet I need to, because otherwise it just festers about and I get upset with the weight of what I have to carry around. I know I need to accept this, but I do need to get upset about it first. And despite what my friends tell me, I cannot just forget about it. I really can't. And I know they'd feel the exact same as me if they were in my position, yet they seem to have minimal empathy for me. I guess the reason I wanted to start this blog was to whine about things like that. Things that I need to talk about, but short of having a therapist, I can't talk about. If I'm entirely honest, I'm scared to look to the future. I'm just too scared to think ahead as there's no predicting my CF.

So, on that note, I'd like to apologize to myself for taking for granted two of the most important things in my life (although everyone takes them for granted, and I still can't see some Divine reason why it was me that got lumped with this shit) I know it can't be magically fixed no matter how much I wish it would.

World mental heath day

So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...