I survived.

I think. All appendages accounted for, so I consider that a win. It was pretty awesome. I got completely knackered walking from the meet up/sign up point to the top of the bridge, but hell, it was SO worth it. The only part where I was completely and utterly scared was standing on the edge of the bridge b/c it just seemed so easy to slip. Yeah I was already harnessed up and shiz, but it was still scary!

 [Can you blame me?! It was shit high up there]

 [Weeeeeeeeee. Major fun]

[Detach-ment]

[Most likely me being a complete tool and genuinely asking what are the chances that I'd hit a seagull. I'm not a seagull fanatic or anything. I just think that beak would hurt if you hit it at 30mph]

Major hugs to everyone who donated :) I overtook my target too, so yay! It was definitely awesome and me and my cousin said we'd be doing it next year (She didn't this year). Next year it's a zipslide off the Baltic. A big art building-y place not far from the tyne bridge.

It's a *tad* higher up than the bridge - I'm guessing we'd be on the roof. But I just climbed over a freaking barrier of a bridge and effectively sat in mid air supported by a piece of wire (I resisted calling it a 'piece of string'). So I'm pretty sure I can do this too.

Some videos for you lovely people too. Unfortunately my camera apparently cut out the second that I started actually winging my way down to the finishing point, but my cousin, who was the one taking the video, switched it back and and caught the majority of the zippy-ness.

Plus, I got a free t-shirt.

It's a jungle out there.

The world is loud. Really loud.

I got my new HAs yesterday. And I've spent the time since just... listening to stuff. No matter which HAs I get, you can't fix the nerve damage so it's still all fuzzy and not exactly clear. But I can hear stuff I haven't heard for years without trying or having to be right next to the sound. I can hear the bloody car radio now. And the washing machine in the other room. I can hear people talking as they walk behind me. And my typing is loud too.

It's funny cos these sounds annoy me like they would if I'd been able to hear them for years. But I haven't for the past 7/8 years. So as much as it's annoying to hear the washing machine rattling away in the kitchen when I'm in the front room, I'm not complaining. There's sounds I love that I haven't heard for ages too and I really want to. I want a massive rain storm, even though everyone would undoubtedly complain about that, b/c I want to sit by the window and listen to the rain hammering against it b/c I must have been about 10 when I last heard that.

An extra plus about these HAs is that they're smaller than the bricks I did have, they're water resistant (so I don't have to dive for cover if I get caught in the rain, it doesn't mean go swimming with them in though). And they're all groovy and synced so if I changed the volume or T-position one of them, the other does automatically.

I walked past my mum on the phone earlier. And I could hear the other person talking. I don't mean I could understand them, so phone conversations are still a no go for me. But I could hear them and I was just walking past the phone.

Never take your hearing for granted. I learnt the hard way.

Can you hear me now?

That'd be a no...

I'm starting to realise how much I rely on my, albeit very little and shitty quality, hearing that I actually have left. You might think it probably makes very little difference, loosing a HA for a week or so and just going about with the one ear. Apparently it's a huge difference. At least I get my new ones tomorrow. This whole one 'good' ear shit is starting to get old. And annoying. Although I've had a tiny taste of what it's like not having to faff about with one of the damn HAs for one side - I can listen to my ipod without having to take out a HA first. Mucho handy.

I thought it wouldn't affect me whilst in the pub on Saturday. Turns out it actually did. Whilst mostly I just hear background noise rather than my friends, I can actually hear them a bit, and I didn't even notice that properly until Saturday. The night was good though.

It's 5 days till I scream my way down the zip slide and I'm just over half my target, so major thanks to everyone who's donated, especially with it being last minute, I had doubts with being able to raise the amount needed in that sort of time.

I finally finished IVs yesterday and I swear that I've never been more greatful. The drunk-side effects which usually serve as good entertainment for basically everyone else lasted for a few days. They wore off by the first Thursday/Friday and then that Friday was when I cracked my head off the damn cupboard and ended up with a concussion for my trouble, which was kind of it(!) Oddly enough, by the Sunday the drunkness came back with a vengeance and I could bearly control my legs which started to take the piss. I was out with the whole family at that point, but my walking just got so abysmal that I asked for the keys to the car and just sat in the car for the next hour. And for the next week I kept having days where I'd either be fine, or I'd be gripping onto the banister for dear life to stop myself falling backwards down the stairs, and having to grab onto stuff to stand up as my legs just didn't seem to have the strength to deal with my constant demands of wanting to walk around, or standing up and so on.

I think they've worked. I definitely feel better but my memory is so crap I generally can't remember how I felt when I started the IVs. I know I had a worse cough and it's better now, even though I'm still coughing at night b/c I broke my bed - I had an electric bed, and managed to break it by putting too much weight on the top bit when it was raised (in a sitting position, like a cool hosp bed), and the mechanism couldn't take my weight and snapped off.

Yes, fail.

So now I have a boring flat bed until my Dad can fix my bed. And apparently I cough a lot when I lie flat (I never manage to stay upright with pillows). Doesn't bother me b/c I sleep through it but it pisses the hell out of my family. Obviously they weren't kidding when they said that you shouldn't sit on the top part of the bed when it's raised.

At least I know now.

Zip slide

OK....

http://www.justgiving.com/Megan-Clark

Jumping off the Tyne bridge in Newcastle via a (I'm hoping not flimsy) piece of wire and a harness that had better fucking not snap on me.

I hate heights. If I look over the edge of a barrier and I'm really high up, I panic, and get that jolt in my stomach imagining what it'd be like to fall. That's not to say I keep my feet on the ground all the time. I love rock climbing and climbing up trees like a nutter. But there's just the idea of being suspended over the river, travelling 30mph. And the minor fact that I can injure myself doing sweet FA.

It's last minute, I know. Most people sign up for these at least a month or two in advance. I'm doing this in less than two weeks. I'm pretty sure I'll do it on the 26th June (I have the option of 26th or 27th), although I think it's all about the timing - 26th is Saturday, and I'll be at college. I could always disapear for 30 minutes, and when I walk back into college (not saying I have to, but if it was a busy day, I would) saying 'Oh I've just zip lined across the river' would be one hell of a reply to 'where did you dissapear off to?'

If you donated I'd love you forever :D And even more so if you posted the link around to get it just that bit further.

Little moments of win.

Ok well, when this first happened, it pissed me off a lot. But it had a good outcome. So..

Saturday morning, in the car to college, my right HA decides to rebel and starts whistling, a lot. It's sort of like a high pitched squeal, and everyone can hear it. Well, everyone, bar me. My hearings that crappy I can't hear the damn thing squealing when it's directly in my ear. Which I'll admit is a bit stupid cos I can hear with earphones at a perfectly normal volume (and yeah, this both freaks me out but I find it epically cool at the same time, even if every things still muffled and unclear). It's a frequency thing apparently.

I have to rely on other people's reactions (unless I ask them to directly tell me) when wearing my HAs to see if they notice my HAs randomly whistling. Which meant on the entire journey to college I was probably really bugging my Mum with randomly switching on my HA to see if it was still being a bastard. I gave up, and just left it in the car when I got to college. Which meant going through the day with one functioning HA. B/c nerve damage is complex, it's not just like putting my HAs in instantly fixes everything. People seem to think, you're deaf, you get HAs, you can hear. That's total bullshit b/c hearing is something you have to learn. When you loose it you have to learn it all over again and that's fucking difficult when you can't understand a word someone is saying - nerve damage kinda wrecks the ability to clearly understand someone. So basically, for me, I just hear noise, and really genuinely struggle to understand what people are saying.

I'm so shit at explaining this but hopefully you get the gist.

College with one HA was... difficult. I can lip read but I'm not that good at it. Silly, cos after 8 years of crap hearing, having to make sure you can see someones face in an effort to understand them, you'd think that I'd be quite the skillful little lipreader. B/c I have probably less than 20% of hearing without my HAs, I can't hear a thing without them. I gave up listening at college and just put my ipod on instead. Which had a hilarious outcome when the tutor asked me a question based on photos we were looking at and I managed to blag my way through a random (but surprisingly accurate) answer.

I might be rubbish at lip reading but I'm apparently skilled at bullshit answers to a question I barely heard in the first place.

I got home and attempted to get my HA working again. Failed royally and now it's sitting on the mantel piece like a dutiful little broken piece of crap. We went to Hexham ENT on Mon to see if they could get it working. My theory was that it was the ear mould bits being knackered which was setting off the feedback. So we sat in the waiting room of old people (it's stupid that both the ENT and the chest clinic is full of old people - can't I have something wrong with me that surrounds me with people my age that I can actually meet!?) which to be honest should be called 'the waiting room of death' seeing as everyone else was 70+. We finally get called, and we wander into the technician's room. They're stupidly blaming my ear for the HA rebelling, but that honestly can't be the reason it's knackered b/c if it was, why does it whistle when I switch it on but it's not in my ear?! Basically, despite whatever the ENT people say, I'm sticking with my diagnosis:

It's fucked.

I left the tech's room basically as I started - with a knackered HA and no obvious way to fix it or give me the other half of my hearing back. I got pissed off a lot at this, I was angry and sarky to people, and to be honest, on the verge of bursting into tears b/c they didn't seem to be helping me and just saying my ear was the problem when it blatantly wasn't. The fact that this almost made me cry when I never cry really confuses me though.

I thought that I'd at least be able to pick up my new ear mould things seeing as I swear the woman told me they'd post them out to me but they never did. Turns out that the new moulds were gonna be for my new HAs, and they were just gonna leave me with the old falling to bits ones until I got them. The ball dropping part of this was the fact that there's a waiting list for new HAs, and I was at the bottom, so it'd take months. There's genuinely no way these ear pieces would have lasted that long - the list was so long I didn't have an actual, or even vague, date for my new HAs.

B/c of my right HA fucking up and refusing to work at all, I've been bumped to the top of the list - earliest appt was next Tues, for which I'll hoof my way over to the Freeman in Newcastle. I'm uber pleased at getting new ones though - I asked my dr for new HAs, basically of any kind, b/c my current ones were a) the size of fecking bricks, and b) 5 years old and the sound hadn't been adjusted for my hearing since I got them and c) were supposed to help me hear things better, being digital and all, but never did. She point blank said no to this, and said my only other option was a cochlea implant. I don't want one. At all. B/c whilst they may work for other people, I have enough going on without basically having brain surgery too. Plus, they only work for one ear, and have a massive ear piece round your ear (which is what I hate about HAs too) so I'd still have to wear a HA on the other ear. So it might be awesome for some people, but it's not the be all magical fix - I'd still probably have difficulty understanding people, not being able to talk on the phone b/c that's not face to face communication. Stuff like that.

When I saw a different ENT dr at Hexham, I asked basically straight away (I figured, ask now and find out, rather than sitting on the question and building up a rapport with the dr or something). He said yes, and they're apparently going to be Naida hearing aids. Never heard of that brand before but apparently they're really good. So mucho excitement.

Unfortunately that means I have basically one ear for week. Kind of annoying seeing as I'm meant to be going out on Saturday. Bright sides are that I don't do anything all week - it's not like I go to school where having even more crap hearing than usual would be an incredibly annoying and unhelpful thing. And the fact that going out on Sat, even just with one HA, probably won't affect me at all - we'll be in the pub, and even people who can hear well can barely hear in there. It usually gets so loud I switch them off anyway. I'm adjusting to having one HA, which is odd. The plus side to it being my right one that broke, is that my left ear is kind of clearer and hears *slightly* better than my right. So if I had to loose one HA, it'd be the right one. At least it's only for a week. My tinnitus in my left ear is being ridiculously loud at the moment. No idea why. Hopefully it'll bugger off, b/c it's incredibly loud, off putting and distracting. I know people cope with it, but mine is beyond loud - I'm pretty sure I'd gain at least a tiny bit of hearing or the ability to understand people better if I didn't have tinnitus.

So yeah, it sucks that I can only half hear with what shitty hearing I have left at the moment, but the win is that I got bumped to the top of the list for new HAs when I otherwise had no idea when I would be getting them. Good things can come out of the bad. Sometimes it's not that obvious to see it, but dammit, it'll be there somewhere.

Wow that was a ramble and a half. If you got this far, congrats, and reward yourself with a cookie :)

'Cause you had a bad day...'

Everything about today pissed me off.

It basically started straight away when I realised I had a whole list of stuff to do, and basically today to do it in. I probably didn't even get through it all, which I'll imagine will be fun when I realise uber last minute the stuff I need to do. It didn't help with a bunch of ridiculous injuries, the worst being standing up fast and cracking my head off an open cupboard door, so hard that it sent me crashing back to the floor and basically sitting there like a complete tit for a while till I managed to focus again. A close second was trapping my finger in the door when I closed it. Which still really hurts.

I've had a stupid headache all day which I'll bet will be something to do with the murderous tendencies of the cupboard, but it definitely made everything just that more difficult to focus on. I've got college tomorrow which will undoubtedly be a bore fest and I'll bet that I'll forget something. I always do. Every week someone has to remind me to grab my lunch from the kitchen b/c I can't count how many times I've been halfway through the door and someone asks if I have my lunch (the stuff at college is basically sandwiches... and I'm weird and don't like sandwiches).

Plus, I managed to forget my IVs twice today. I don't mean forget them entirely, but I keep forgetting to do them and end up doing them a bit later than I should. Since starting this round on Mon, I've slept through my alarm everyday, bar... once I think. I'm stubborn and annoying and really don't like other people doing my IVs for me. Seems like a stupid choice, I know, but I prefer to do them myself. No idea why. Maybe it's something silly like not liking the lack of control when other people do them.

The bright side to the day was going down the road to see my cousin and laughing. A lot. Hilariosity at its best, and irony when you have a conversation on your weight whilst staring at the contents of the fridge.

Urgh, anyway, probably shouldn't blog when I'm pissed off. Rant done.

And on today's menu...

A bitch of a left lung which inexplicably hurts with every breath.

Fun(!)

No idea why or what caused it. It goes away, it comes back, I grumble, and it fucks off again, so that's a fairly fun circle to participate in. IVs got started today. Which was... interesting. I'm in clinic too much, it's starting to severely piss me off. You know you're there too often when you walk up to the Secretaries desk and they smile at you, say 'Hi Megan' and ask you how you are, rather than ask you what your name is/which dr you're seeing or whatever. I don't mind, but honestly, it's a bit ridiculous when you can start joining in on the banter with the nurses cause you know them so well.

Once again I made my valiant attempt at looking through my notes. They were sitting in the note-holding thing outside my door, so I grabbed them, sat on the floor, and flicked through. I'd completely forgotten (for the most part) about my admissions I kept having when I was 11/12 and that I was oxygen dependant whilst in there. So yeah, I find these notes really intriguing. My memory is shit, so it's kinda cool to read back through that stuff. Mind you, I really pissed off the two student nurses and the physio who walked past. She asked me why I was sitting on the floor by the door, and I said b/c I couldn't be bothered to go back in the room. Obvs b/c of all that infection control shiz, I changed my mind and went back in the room, and cracked my notes back open. Then the physio walked right in the room and took them off me.

Damn.

She gave them to one of the student nurses (which pissed me off royally) and he stood outside an empty clinic room which my Dr uses as a sort of on site office when clinic isn't too busy. I'm guessing he was waiting for the Dr to stop being so busy so he could tell on me and give him my notes so I couldn't read through them any more. B/c that clinic room was right opposite the one I was in, I stood in my door way (so not technically leaving my room and getting told off) and harassed the student nurse a bit. I just wanted to read the bloody notes. And if they're sitting on the wall, it's not like I'm being an inconvenience by stopping anyone else getting their mitts on them. B/c it was a guy student nurse, I couldn't hear a word he said. But he looked like I'd seriously pissed him off a treat, and I'm pretty sure that he told me to go back into my room (although if we're getting technical, I WAS in my room). So I shut the door on him and got back to my whole *lets drip stand skate and bash into all the medical equipment in the room* thing that I usually do. I did keep looking out the door, partly out of boredom and partly to piss off the other student nurse who was apparently dossing about in the corridor - I swear every time she saw me I got a death stare.

Clearly I'm making her choice of profession seem like a brilliant choice right now...

I never saw the physio properly - there's two (that I'm aware of) and it was the other one who came into my room for all of 2 seconds, decided that she'd rather see me after IVs have finished and asked if she could visit me at home instead. Which I'm cool with so I agreed. The dietitian saw me for less than a minute. Kinda funny when you think of it - she sat down, opened her folder, told me my BMI is 19.5, and to keep eating like I am.... and then left.

I don't think the hosp staff like me sometimes.

My Dr was the same too. Don't think he even commented on my LF dropping 10% (or 15% depending on which numbers you look at. Although this isn't the end of the world b/c my LF is still good, and there's nothing stopping me from grabbing back the numbers I dropped, b/c I'm a determined bitch like that sometimes). There's this whole problem I have with the usual heparin my hosp uses. I have a reaction to it b/c I'm cool like that, so I make extra hassle by needing a different brand. Well... any other brand, to be honest. I usually have canusal, but apparently they've stopped making that. I've got enough from previous IVs to last me a week whilst they find something else I can use. So my Dr spent a few minutes... actually I have no idea what he was doing. Looking through one of those BNF books at Heparin or something? He did ask what the reaction actually is, probably checking to see if it's in the book. I'd bet not b/c I'm special and like to be different. He probably thinks I'm making that shit up just to be inconvenient.

What basically happens, when they use the usual brand, my ears start ringing reallllllllly loudly. I can't actually hear anything above it b/c it gets so loud, I get a headache and feel like there's massive pressure across my forehead. And I feel a bit off balance and trippy for a few minutes. So obviously, they like to avoid using the usual stuff.

After basically double checking my IVs and half-sorting out my whole heparin annoyance, he left too. So... physio, dietitian and the Dr just couldn't really be arsed with me today. One good thing about my clinic is that I'm never actually there too long. They don't keep you waiting for hours, and IV days are usually the longest b/c you've got to sit through the first dose. After I got disconnected and had to leave the drip stand behind (shame...) I had lunch in the hospital, b/c I was hungry and one thing they can't fuck up is baked potatoes, which I like. And even better, I had the best view of four fit Drs eating lunch, which always improves the day. Unfortunately they're not CF Drs of any kind.

Anyway. So yeah, I'm getting really bored in the week, just sick of doing nothing. And I'm not gonna get a job or something b/c that'd be for about 3 months (I'd be amazed if I found a job in that time frame to be honest, haha) and after dropping 20% of my LF when I had my old job, I'm not even gonna bother. I just really want September to come around so I can start the full time course. It's gonna wreck me, for sure. Waking up at what I consider a stupid time (but what everyone else calls 'being in the real world') after being able to sleep in and do whatever the hell I like for a year and a half, is gonna be a bitch. But I'll do it.

Bring it.