Friday, 24 September 2010

I miss it...

I seem to be making this whole mental list on how life would be way easier if I could hear. It's stupid, I wish I could stop doing this to myself. Thinking about how things would just be simpler to cope with if I could take out that extra factor that hinders so much from what I try to do.

I'm not saying life would be perfect. But not being able to understand what people say, even if they're directly in front of me, which in turn makes me shy as hell around people and feeling useless cos I can't really have a proper conversation, so many of my friends I've lost touch with cos they're busy and have gone off to uni, so they'll keep in touch with the odd phone call, which I. can't. fucking. do. I swear, if you tell me talking on the phone is overrated, I will be determined to smack you silly b/c you know what? It's basically like saying to a paralysed person 'hey, don't worry about not being able to walk, it's pretty shit anyway'. You'd still miss it, wouldn't you. You'd like to have the option to, right?

Ok so yeah, I sort of hate college at the moment. I'll get used to it, I'm sure. But for now I'm feeling really small and shy. The only problems I'd have, if my hearing would some how fix it's good-for-nothing self, would be exhaustion from shit-timing CF and trying to keep up with the warped idea of managing to start, and complete two projects within two weeks. Call it induction week all you like. I call it 'seeing how far we can push the students to see if they'll last'.

I'm feeling absolutely rubbish on the CF side of things. Coughing basically 24/7, and I can't stop. I got a cold during my IVs and so they basically did nothing. I hate how you can get a cold in a matter of seconds and it ruins the whole load of work the IVs (and you) have done to stay well. I've had my hosp appt moved from the 4th Oct to next Monday, and we'll see what the dr says with my lovely combo of exhaustion, hemos, non-stop coughing (which sounds horrendous, apparently, I'm actually getting the whole concerned look off my family and they never do that cos they're so used to me coughing), chest pain and getting breathless doing simple stuff. I hate feeling like this and I rarely feel this crappy.

On the other hand, I know I'm not the worst off, and other people are feeling much worse then me so they need the get-well-ness hugs and thoughts.

Tuesday, 21 September 2010

It's gonna be a long two years.

So, first day... scaryscary, yeah?

Ok, yeah it was. First day involved a fuck load of walking around and tours around campus (yeah I know I've already been here but I've not been around the entire place so we kinda had to go). I didn't really speak to anyone, I'm too shy to, and exhausted, and I can't hear what people are saying and they mumble, and it takes more energy than I had today to really listen to people so I sort of just kept with that one person who I already know. Minimal energy me means sticking in the comfort zone rather than talking to people and getting to know the others on my course.

And you know what? I'm so tired after my first day, that I've just been thinking constantly 'I can't do this'. One day, and I'm knackered. This is a 4 day a week course for two years. How the fuck can I do that?

We've already been given the outlines of two projects to start, which have to be done and finished by the end of Oct. DSA are taking their sweet time, and I don't have anything from it. Main things were the taxis (cos it's stupid to ask my dad to run me to college and then drive back every day) and a note taker. There's someone from student support who was signing away for the other deaf person on the course, and she had my name on her sheet, so she's there to help me too. We're pretty sure she'll end up being my note taker too b/c it'd be silly to have two support workers in one class.

My first project is dark room stuff. I hate that, I'm not that good at the enlarger process and I really HATE the actual darkroom b/c I can't understand a thing anyone is saying as you can't see their faces. 

And I'm just so fucking tired and worn out. I don't want to admit this to anyone cos they'll just tell me I'm just worried over nothing and I'll be fine. Clearly my logics a bit warped with writing this on the blog... but yeah. It's not like I can just pick up the phone and rant to one of my mates about it. Texts can only convey so much.

Saturday, 18 September 2010

Rant time...

Been feeling very *blah* lately. No idea why. I think it's still the impending college thing. Please stop fucking telling me I'll be fine b/c it's either gonna go really good, or really shit, and I can't help but think, however it's gonna go, I'm gonna have all this extra stress generated by that woman who was on my previous course but who is on this one too. Once a week for a year was enough. So a sense of dread creeps up when I think of 4 days a week for two years. Deep joy...

There's nothing to get ready for college really. I'm thinking of not even taking my camera in for the first day - I was told that the first year is mostly film, and I really hate the darkroom part of that, so thats another sense of utter crap-ness that adds to the fun.

I just seem to be finding stuff that pisses me off lately, not a lot seems fantastic. My last IVs were basically a write off when I got a cold during them, thought it left early by some miracle, only for it to return the next day, so I ended IVs with a cold, pissed me off royally, as I'm coughing worse than when I fucking started the things and that's not something that makes me want to jump up and down celebrating for some reason.

Oh and driving is a fail lately. I suck at reversing round a corner. Last lesson was really hot, specifically for the time we worked on maneuvers (and then it cooled down when I drove off, talk about timing) and the sun kept catching me in the eyes a lot too. I was starting to get really frustrated, I know it takes practice but I'm not any better from when I started on the damn things. My heart just sinks when I'm wonky in the middle of the road, miles away from the kerb, and my instructor says 'ok, try again'. She's really nice and we have a laugh, but one thing that really annoys me (and why I kind of despise the dual pedal control system) is that if I stall somewhere, or stop too slow, she'll break and clutch, and then tell me to start the car back up but won't take her foot off the clutch, so I can't find the bite and start driving again. Really annoyed me when that happened at a crossing. I didn't see the old bloke on his scooter in time (woops...) so she slammed the break on, I ended up stalling and she said to start the car back up and drive off. I would have... if she would take her foot off the flattened clutch. It was even worse that a whole crowd of charvs were sitting watching at the time. I pretended I couldn't see them but it really knocked me one when they were laughing at my spectacular almost killing a pensioner, stalling, failing to drive off... grr.

Yeah so that's my rant. Probably has a few things I haven't mentioned, not really blog stuff or things I'm trying to ignore that are making me crazy. I don't deal with stuff well. I let it collect up and it probably has some sort of amazing volcano affect to be honest. Feel sorry for the people I vent to. Really. I hate feeling like this. I'm really trying to see bright sides in stuff, have a laugh at things, but something always crops up and wrecks my mood.

Although I've discovered hugs are a nice temporary fix to this :)

Tuesday, 14 September 2010

Liar liar.

All over facebook, people seem to be having a mini implosion over the fact that a CFer called Karalynn Davies, who apparently passed away not too long ago, was actually a fake. Now I'm hardly someone who's following this perfectly. To be honest, I can't follow a lot of it as it just gets more and more confusing with other people being involved and things that have happened with no explanation, but this is really starting to get stupid. It's not the first time I've come across someone who's faked to have CF. In fact there's been loads, mostly over Facebook as its a simple way to fake - all people really need is some woe-is-me, I-feel-crap statuses and if they want to 'prove' they're really stuck in club med, they'll add photos which could have actually been ripped off from god knows where.

Kinda reminds me all about the whole Gina/Pepe/Blake shit that went down two years ago. CF (and cancer, so I've heard) seems to be a magnet for people with Munchhausen's syndrome. No idea why. I'd never wish any of this crap on anyone, even someone I hated.

From what I've heard (although it could be just grapevine stuff that's gotten a bit confused through out the re-tellings) A woman called Claire, who actually did have CF, branded herself as 'emo' along with another friend. They apparently decided to create the fake Karalynn profile to see how much attention they could get based on looks, so they used photos from an LA model (who clearly has her shit ripped for a LOT of fake profiles, basically everywhere) along with extra fake profiles of the dutiful best friend (called Corrine, who's photos were also someone else's) and then a whole load more for Karalynn's friends and family, probably so they could cover all bases.

I have no idea where the CF came into this to be honest. If you're going just for attention on looks, why add CF into the mix? Although some people do actually like to squeeze every ounce of attention they can get out of genuinely having CF. Sounds stupid but it's true.

I'm gonna carry on, that's if you're still with me here. It's confusing to write out, must be just as confusing to follow.

So... 'Karalynn' did get the attention she was after. Something started up with a bloke called Paul, and they'd message/text/call each other everyday. But they never met. Paul believed that Karalynn was real, even though his family apparently had their doubts, from what I've heard. I'm pretty sure it was Paul who brought the whole fact that this was all fake, to light, after what must have been a fair amount of digging.

The real Claire died, and then so did Karalynn. Corrine kept posting, memorial pages and a Just Giving page (which money went straight to the trust to) were created. And then the shit hit the fan when Paul did his digging. Claire's friend who was posing as Corrine, took everything down and no one knows who they really were, if Claire wasn't just another persona to take the blame.

There's probably more that I've missed out but it's just getting more and more confusing and I don't think anyone is really following it that well anymore.

But either way, no one is happy. Whoever did all this lied. No one likes to be duped. But when things like this hit the CF community it really does rock the boat b/c it makes everyone paranoid and no one knows who to trust - the main reason being that CFs can't meet, or may be on the other side of the globe. So you really don't know if the person you're talking to is real.

I'm not sure on my opinions on it to be honest. But I'm pretty damn confused myself b/c it takes a sick fuck to fake all this, to basically glamorize having this shitty illness. It's scary, it's fucking down right difficult a lot of the time, and yet someone thought it would be fun to fake it like they did. And when these things happen, it really makes you question the integrity of some people.

Friday, 10 September 2010


  •  It’s 1 am(ish). I’m eating frosties (with more sugar) and I have a cup of tea begging to be drank
  • I’m aware that I’m bloody lucky my glucose tolerance test came back basically perfect, as I came to the realisation of what a diabetic nightmare I’d be
  • That realisation struck me as I was eating golden syrup with a spoon
  • Out of the tin
  • And that’s only b/c I was bored and impatient waiting for the last crumpet to pop out of the toaster
  • Along with my insane worries about college, I’m now wondering how many huge college students are going to ask me if I’m lost
  • Y’know, in the whole ‘aww it’s a tiny 14yr old who’s wandered onto campus’ way
  • I have no idea if that’s me being strange or something that has the genuine possibility of happening
  • I’m fully aware that one day I’ll probably love being thought as younger than I actually am, and be flattered to be asked for Id at every turn
  • But for now, being hit on my random 13yr olds is starting to really piss on my chips
  • In the meantime, it’s a student’s dream being able to get into places on the cheap b/c you still look young enough to pull a child fare
  • And I’m pretty impressed with myself for not spilling my frosties whilst writing this

Sunday, 5 September 2010

The countdown begins.

I start my college course on 21st Sept.

Bricking it? Me?


I know why I’m freaking about it though, and there’s nothing I can change about that. It’s not the place, or the staff, or the photography processes that you have to do (although I hate the darkroom as I’m useless – I can’t understand a word anyone says to me as I can’t see their face and lights are banned in there). What I’m all antsy about is the meeting new people thing as I tank badly at this. The hearing thing digs its heels in here and I have no idea what people are saying to me. So I come off a bit thick, cos I’m agreeing to god knows what, or I seem rude b/c they think I’m ignoring them.

Sucks, but what can you do?

I get Mondays off though. The first two Mondays off I’ve got are already booked up with appointment-fun-ness. The first one is on the 27th, I’ve got the joy of going to the dentist b/c who doesn’t like being asked questions from upside down that you can’t even answer b/c someone has their fingers in your mouth poking at your teeth? And then on the 4th Oct I’ve got clinic, which my Mum is coming with me to b/c I’m really sick of my dr right now.

There are two other consultants for the chest clinic. One who’s been there for ages but apparently is ‘really on the ball’ and he’s a laugh too, b/c I’ve spoken with him a few times. And he also doesn’t take any shit, if you piss him off or act like a moron, he’ll call you on it. The other dr is new, young, and fucking hell he’s fit. And to me, he’s way better than my current dr b/c when I had to go on the pred increase to 30mg for 5 days, it was his idea – my lungs were being temperamental bastards, as always, and had been increasingly painful for a few days, till I just got beyond tired of it and asked my Dad to call the hospital, to which they’d just said to bring me in to morning clinic. That’s the first time I saw that younger dr (b/c my normal one wasn’t there that morning, or something to that effect) and he sent me for an xray and then told me to increase pred for a bit. Which is a damn sight more than my dr has ever suggested. Even after I’d landed myself in hospital from it, he never gave me any pred. It was a few weeks later at a clinic appt, that he decided to bring up my IgE levels of 2000+ (from blood tests taken whilst I was in hosp) and say ‘hey, pred might be an idea’.

At least theres someone who knows what they're doing in that hospital.

Wednesday, 1 September 2010


Bear in mind, I have over 6000 photos since I got my camera last year, and these are only randoms that I've taken recently. And the crappy ones of me are off my webcam about 5 mins ago whilst waiting for IVs to finish. Fuuuun. Oh, and I mentioned the Spoon Theory in my last blog. Here's the link if you want to read more. It's definitely worth the read xx

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