Thursday, 26 August 2010

The truth.

Lung disease is a harsh bastard.

I wish it would make up it's mind. Sometimes I feel really good, like I'm not even ill at all, and I feel so far away from friends with CF or whatever who seem to struggle on a daily basis. Then I have those days when I lack the energy to even get out my own room, and it feels impossible that it's just a 'blip' and you'll get better b/c each and every task is so taxing. It's all very 'spoon theory', when some days you have more spoons than others.

I can't help but think that people see me as a hypochondriac. Especially if they only generally see me on good days, or hiding the bad days. Then if you get a really bad day that you just can't hide, no one seems to fucking believe you feel like shit, that every breath feels like you're being stabbed in the side and you don't have the energy to even sit up properly. The main reason I reckon people see me this way, is the whole pain thing. It's not something you can see. So you have to rely on the person in pain to tell you how bad it is. B/c I've had basically a year and a half of on/off pain, (and yeah I'll tell people b/c if I'm gonna suffer, they've got to suffer my whining too) which my dr seems to think jack shit of it. I'm sorry my lungs are complete arses, and are temperamental and sporadically like to make me feel like death, which doesn't necessarily look that way (I probably come off as a whiny child) and yeah I apparently seem to be looking for a miracle cure for this irritating-like-hell pain that won't piss off, but that's just how it is. I don't consider someone a competent dr when 'paracetemol' seems to be the answer for all.

I'm not after sympathy, by the by. I'm just telling it like it is b/c that's what I do. And I didn't really have a funny way to convey any of this, so it's sounding very 'woe is me', but fuck it.

Friday, 13 August 2010

Live fast, die young.

I was talking to a friend about this. I said it scares me, the whole possibility that you could die young, before you've even done something. I think that's my biggest fear - to have basically every trace of your life disappear and drift away b/c you did nothing worth remembering. He said not to spend your life wishing for something, hoping for the perfect life, b/c you might actually already have it. Or at least the makings of it.

It made me realise something though. That I shouldn't spend my life, however teenagery I may act sometimes, obsessing over the pointless things, hoping for things that you know might well never happen. Besides, if you stop hoping for the seemingly impossible, maybe one day it will happen and it'll take you by surprise. Rather than hoping for something for so long, b/c you never know if the real thing won't actually meet your true expectations.

Obviously I'm not gonna elaborate. I like to keep you guessing. And besides, it's not one of those things I talk about much, to anyone, yet alone share it out to the blogosphere. Hell, I think there's just one person who will know what I'm talking about. But the gist is, at least for me (Yes, I'm being vague and pretty much typing out loud, but it's my blog, and I'm doing this for my sakes, so *sticks tongue out*) it's not necessarily about giving up or getting over whatever. Maybe it's just about putting it to the back of your mind so it doesn't occupy so many thoughts. Which I'll admit, sounds so easy but so impossible at the same time.

The thing that I hate, is that it took the death of a CF friend for this conversation to come about, for these realisations to fucking hit me in the face hard enough so I'd take notice of them. For all I know, they've been said to me a million times but I've not paid attention.

RIP Mikey. I'll miss you, our random chats on fb chat, especially about photography, how excited you were about the camera you bought. You took some good shots. Breathe easy xx

Tuesday, 10 August 2010

Bruise like a peach.

What the hell?! I don't usually bruise. And I quite like it that way b/c of my general clumsy ness. It means I'm free to trip/fall/walk into things as much as I please. I don't want to have to start looking where I'm going.

Oh, I've been thinking about a second tattoo. Well, thinking, is more, yes I'm definitely gonna get one. I know where I want it (on the back of my shoulder, vertical in Chinese) but I'm not sure what I want it to say exactly. I was thinking of a cool quote but nothing stupidly long. Whilst I love tattoos I'd never get a huge one over my entire back or shoulder or something. As I haven't exactly completely thought through what I want, it's on hold. Hopefully I'll get it this year, there's still a fair few months left, but I can't get it until I think of something, and I don't want to get it whilst I'm on IVs, which I start on the 20th.

The 23rd is my needs assessment for DSA so I should be feeling and looking spectacularly crap in time for that. I have heard that they get really personal about asking what you can/can't do and Gem told me not to be surprised if I leave feeling crappy b/c of having to admit how awful I feel sometimes and having to say the limits you have on what you can/can't do. I'm kinda hoping that I'll be in the room on my own with whoevers grilling me for answers, aka, not with any parental units, as I don't like talking about how crap I feel in front of them.

I went to Scotland for the day on Sunday to see some family who are on holiday up there (so I never saw them on my birthday). They go to Portpatrick every year. We used to go there for a couple of weeks in the summer but don't anymore. So I've never been there with my camera. After sitting on the beach for ages, and taking random photos, I left on my own and walked along to a rocky place where you can just sit and watch the sea. I actually climbed up a bit of a hill (note: never do that again. Heights and slipping is bad enough, but doing that completely out of breath was a bit too much) and walked across an arch thing, so I could get to the rocks on the opposite side, which were deserted. I loved that. It's been so long since I could just listen to the sea, which I can now, properly thanks to my new HAs.

I took a lot of photos, as usual, and then endured the long 3ish hour drive home. Long day, but I still stayed online till about 3am for some reason. It's not that I'm not tired, it's just that I don't really fall asleep for ages so I don't see the point in trying to sleep and then lying there for hours. I'm not a fan of that cos I tend to over think stuff.

Ok this has been bugging me. I've half been considering not going to college in sept b/c I'm all sick of having to do the whole 'yeah I cough like a bitch b/c of CF, and I ignore you cos I'm deaf, not cos I hate you' thing. It's inevitable that it happens. You don't have to say that if they react badly then it makes them a prick, and how its my choice what to decide to tell people. Cos I know all this. And in fact it doesn't necessarily make people complete douchebags just b/c they act a bit strange. Sometimes they just don't know how to react. I've done the college thing, so I know what the tutors are like, I'm on really good terms with some of the staff and I know my way around campus. And everyone who was on my course I've just finished was fine with it.

All the same, I just really hate having to explain it all, but at the same time, I want to b/c it stops people thinking I'm probably contagious or something. Here's hoping I don't just fuck it all up.

Tuesday, 3 August 2010

Happy birthdayyyyyyyyyy

To me !!!! YAY!

Ok, so I don't feel any different. I wasn't expecting some huge magic *boom* or something when the clock hit midnight (not that it happens, but that would be cool). I've not been too fussed on turning 19. I still pass for 14 a lot which tends to take the piss. And I can't count how many times I've been ID'd this year and had them stare constantly at my license checking to see if it's fake. But I'm used to it and it's not fake so it's all good.

This year should be awesome though. Full time college, continuing to learn to drive, forming even more of an attachment to my camera (if that's even possible...) Yeah it'll be a good one.

My annual ridiculous hospital adventure

I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...