Tuesday, 30 March 2010

Comment-less.

So apparently blogger is being an unhelpful bitch by not letting people comment.

Which is sad, really, as nothing is more depressing than a blog with no comments, right?

Prove me wrong here, people!

Monday, 29 March 2010

Listen up.

I've just realised there's a fair few of us who have hearing loss from meds.

We should make a club.

It's not like we'd ever understand a word each other was saying if you took away the blogs or msn or facebook. But there's something about talking to someone who has had their hearing fucked by meds - there's a world of difference between 'getting it' and experiencing it yourself.

Plus, it's entirely different when there's people who can relate to remembering what it was like. Talking on the phone, having effortless conversations and watching tv without subtitles. I remember that stuff. I may have been 10 when my hearing decided to argue with Tobra and fuck off, but I can remember having stupid phone calls with my best friend back then, and even hearing a whispered conversation between my gran and my Dad about a birthday present (I was probably 8 or 9), when I was halfway up the stairs and had my back to them. I heard every word and turned round and asked 'Um, what thing?' (the 'thing' was a remote control car. I was a total tomboy back then!) and my Gran said, ironically, 'Nothing, big ears.'

Anyway. I'm really not sure what my point is. 'Don't take stuff as simple as your hearing for granted'? or 'make the most of what you have'? I wish I did. Hearing loss, for a lot of us with med related hearing loss, is the loudest possible thing. Mainly b/c of the tinnitus.

It's ironic, with how much hearing I've lost (I think it's about 80%) even without my HAs in, I'll never hear silence again.

On the bright side (for me) if people piss me off, I switch them off and just smile and nod at what they're saying. Fuck knows what I'm agreeing to, but at least I don't have to try and listen to them!

Sunday, 28 March 2010

For Eva

I can't think of any real words. I'm gutted you're gone Eva, I was so convinced you'd get your 2nd call, your third chance at life.

I hope you're breathing easy now, and able to dance around to your hearts content, pain free and with endless energy.

Love love love

Thursday, 25 March 2010

Being bored.

The lazy day that turned into the to-do list that wouldn't die:







In between all this, unbelievably enough, I actually got the majority of stuff done. I still have some college work to do. Mainly research and shizzle like that. Being a 'I'll do it in the last minute' girl doesn't add well with tutors who give you work in the last minute, also announcing that you have to hand in three other projects that must be finished or else you're not completing the course and progressing onto part 3 of the overall course (The Diploma, thank-you-very-much).

Also, you wouldn't believe how distracting it is in this kitchen. I came in here to avoid putting on the tv in the living room and thus never actually getting work done. And I'm sitting here half paying attention to Skins on 4oD. And the fact that I'm next to all my IV things is also distracting. So far I've had a ridiculous amount of fun with a syringe (next up, water fights) and also drawing smiley faces on the boxes of everything.

:)

Monday, 22 March 2010

What I've lost recently...

I loose everything.

It's getting beyond a joke. I've literally considered putting some sort of lo jack tracker on everything I own. Most specifically my keys, b/c they're the worst for it. I think its a skill (other people, not so much) that I can have my keys in my hands, put them somewhere, and two minutes later the buggers have disappeared.

Stuff I've lost (and occasionally found, and probably lost again, with my luck) this month:
  • keys (I'm not gonna even count how many times I've lost them though)
  • my panda hat. I miss it.
  • lens cover for my camera.
  • ONE, yes, just the one of my converses. I found it and then promptly lost the other one.
  • I'm fairly convinced I've lost my DSA form. I need to find that.
  • A couple of leaflets from the job centre. They said I should go on jobseekers allowance (despite the fact I said I don't have the energy to actually work) so eff that...
  • A jacket. Not sure how I loose things that aren't even small, but y'know. It's my skill. So shush.
  • My bank card. Most likely lost that in the middle of Newcastle b/c I'm a winner like that.
  • I've actually lost food too. When you're eating something or about to eat it, put it down for a second and then it's disappeared. And everyone else swears they didn't eat it when I wasn't looking. Last thing was a packet of mini eggs. I'm convinced they've hatched.
  • The tv remote. I loose that a lot too.
  • My phone. Although it's not usually missing for long.
  • My new bank card to replace my old one. I found it after looking for it for 20 mins though.
  • A book from work that I needed for my boss's phone number.
  • Books, in general.
  • A couple of DVDs. I think I found them though.
  • A fair bit of college work.
  • I get lost a lot too. I go out on mini camera mishes and then after 30 mins I'll stop, and think 'Hang on... where the fuck am I?' I consider texting someone to actually find me, but being the stubborn cow I can be, I usually continue walking till I'm either more lost, or things start to look familiar (probably in a 'Flinstones' repeating background sort of way).
I think that's it. In all honest I've probably lost way more than that, I just haven't noticed.

Saturday, 20 March 2010

Soon to be swimming like a little fish.

My 6 minute walk test went good. I managed to avoid embedding myself into the walls or tripping over my own feet (although I came close on that one, many times). My Sats behaved and only dropped to about 91/92, and I walked about 380 metres. Not entirely sure how well that means I did, but the physio did say I need to work on my fitness level. Which I whole heartedly agreed with when, later on after an interview at college, I couldn't walk back up the hill to the car, so my Dad drove the car down to where I'd stopped.

By that point I didn't care though. I really, really hate hills.

My physio said I should carry on going on random walks taking pictures (which I love doing and do often as long as I don't freeze, or be a complete idiot and forget a jacket) and I should also start going back swimming. Which I'll admit I've avoided doing for a while now. I swear every time I want to actually get back into it, I'm on IVs. Which sucks b/c obviously I can't swim with IVs. I'm a week into this round and I'm feeling a lot better than I was before I started. I still have the cough from hell, and still don't have all my energy back, but I'm working on this.

Oh and I bought these:
Everyone knows how clumsy I am so you know how quick I'm probably going to break my ankle in them. But for now I'll enjoy being a tad taller until I actually do go head first into the pavement.

I'm still getting headaches a lot too. It's getting beyond annoying b/c nothing ever works to get rid of them. Although today, at college, being in the studio with the lights really didn't help. In the end I went outside for a bit b/c I swear nothing else helps. Actually I doubt that helped much either but I had to get away from the uber strong lights in the studio (Especially after learning that accidentally looking directly into the lights really doesn't help your headache)

Oh and before I forget, when I got my IVs started, my weight was 45kg. Yey! I'm pretty sure that's the highest it's ever been. Which means everyone is finally getting off my back about gaining weight, b/c I am.

Tuesday, 16 March 2010

So, where have I been?

Erm. Here. All the time.

My life is uber boring in all honesty. I did the getting-IVs-thing on Thurs. And plenty of drip stand skating was to be had. We did try and leave to get some food (seriously, 1pm appointment times do not sit well with the needing food thing) but the nurse said I had to stay in the room. I can't remember whether it was cause colo was going through the drip, or basically, just b/c I had the drip stand, but either way, I was stuck in the room. More or less. I did drip stand skate up and down the corridors. Unfortunately no epic videos were to be had this time. Well, I lie - there's one on my phone but it's being a total douchebag and won't transfer. My addiction to skating on the stand really pisses off the nurse. And also makes my sats drop, which I found out when the lung function tech took my sats and they were lower than usual.

Luckily the colo side effects aren't too bad this time. Last time I had IVs, they lasted basically the entire two weeks. Which is strange b/c it hasn't done that since I first started colo. But this time it's back to normal - I was walking really badly the first few days (which made college so enjoyable(!) walking up the stairs was a fairly good challenge) but it's not too bad now. I just wobble a bit.

I've got constant headaches which are... well, basically doing my head in. It's annoying, and can't be caused by being in front of the computer too much - most of the time they hit when I'm nowhere near the laptop. In fact, it's more or less mostly when I'm outside. Although walking usually means plenty of coughing fits, which means headache galore, pretty much. It's getting annoying though, as painkillers rarely work on them. I'd say I've had a headache every day for at least 3 weeks. So I'm going to try and remember to tell the physio when I have to go for my 6 minute walk test tomorrow. The walk test should go fine - I can generally walk 6 minutes without a problem, as long as I'm not walking up a hill. If I did have to walk up a hill, good luck getting me to walk more than 30 seconds. If that. And that's depending on the hill. Obviously. But none of them are my friends.

Meh, however the walk test goes, I probably won't be very conscious for it - it's at 10am which means getting up way before that considering its a 30 min drive to hospital. I'm used to getting up at 10am for IVs, and that's early enough (When my alarm actually works. I slept in till 11.30 this morning).

Thursday, 11 March 2010

And reappearing.

They say when you're young, and when everything goes wrong, it feels like the end of the world. They're right. But at the same time, you know it's only just getting started.

First things first:

Rachy got her call! Really, really pleased for her! She got the call at about 4am on 10th March, and didn't get the green light that all was a go until about 5pm that day. Hell of a wait. Can't really think of anyone who deserved this more, but it doesn't mean that there aren't others still waiting, so making sure as many people as possible are signed up is still really important. Last I heard she's doing well in the ICU. Yay!

**********************************************************

I quit my job.

I had to. I hated every time Friday came around. Plus, after a long Friday, it made it slightly harder to get to College on Saturday. A job is a job, but college is the important thing b/c without it, I'm doing nothing with my life. It wasn't the idea of quitting which I struggled with; it was more or less the fact that I'm 18, still with good lung function but I can't even manage a 6 hour day at work. Granted, I'd probably do much better at some, equally boring, but less taxing job where I'm sitting down all day rather than being on my feet the entire shift.

People keep telling me that I made the right decision. On one hand I agree with it but on the other I'm pissed I even had to make this choice. I have less and less Independence as I get older and it fucking sucks. It's supposed to go the opposite way. I rely on people so much and having a job was my way of proving that I'm not some invalid. Plus, the entire time, I've had this annoying question hanging over my head - If I can't manage a 6 hour day at work once a week, how in the hell will I (If I ever get in) cope on a two year, full time, 5 days a week (I think; it might be 4 days) foundation degree course at college?

Let me be the first to declare that I'm well and truly fucked.

I wish I could get a photography job. I don't even know how I'd manage that as I don't even have my full diploma qualification yet, but there's something about photography which gives me loads of energy (granted, this depends on how I'm feeling in the first place). I don't even understand that myself. The other week, I finally had energy and it was a really nice day, weather wise. Despite the fact that I'd woken up with my ankle protesting me even contemplating walking on it, I still went out. Yeah, that didn't help my ankle, but it didn't make it worse. And I forgot about it after walking a mile. I couldn't even believe myself how far I'd walked (especially given how crap I'd been feeling lately)- but I zone out when I'm taking pictures. I walked along part of the derwent river, then went to shotley bridge and over to a bunch of deserted houses. I couldn't get in any of these places, not for lack of trying, but they all had those really strong locks on the doors, and boarded up windows. Way to spoil my fun!










I was completely knackered when I got home after this. I didn't mind - at least this exhaustion was from actually getting out and walking everywhere rather than exhaustion from walking up the stairs.


It's uncomfortable lying on the floor. No idea why I do it!

Monday, 1 March 2010

Mini disappearing act.

Alrighty. I think I'm gonna take a break from blog land for a bit. I'm not sure how long, maybe a week, or two. Or at least until I can think of anything half decent to write. Really not sure how long that will be. But I will be back.

Before I forget, I've just realised that I'll be a week into IVs when I have to do my 6 minute walking test later in the month (my physio is all interested in what my O2 sats will be doing). Seeing as I always get colo for one of my IVs, something tells me this 6 minute walk will become a 6 minute 'attempt to avoid crashing into the walls'. I'm considering taking my helmet.

I'm not lying. I actually have one.

Anyway, I'll be back. Not sure when, but I will be.