Saturday, 28 November 2009

I cough too much.

My cough hates me. It's like, it stores up loads of coughing until I'm out in public and then I'm hit with one of those oh-so-fun and spectacular coughing fits.

I mean, really, even in the swimming pool.

Oh well. I'm gonna have to learn to deal with it. Right now, my favorite way to do this is to just flip them off when they turn around. I clearly swear too much, but what the hell. Why not?

I think it's the cold that did it. The stupid thing is, the IVs I've not long finished were b/c I was coughing a lot, although not really considered as that ill at the time as my LF was stable and my weight was up. So, the IVs were more or less to try and stop my cough, as coughing all day and night takes too much energy and it's harder to gain weight when all said energy is going towards coughing and fighting infections.

Where was I? Ah yeah. Basically, the IVs probably didn't work as much as they should have. I've no idea why, but I was still coughing afterwards. If you add that to a cold, you're gonna be coughing more and might as well have not even fucking bothered with the IVs. I don't want another round this year. I've already had loads. More than I usually have, I think. I'm just terrified of becoming resistant to things; I used to have Cipro whenever I seemed to be getting ill but didn't want to resort to IVs. And now it's stopped working. It used to work fine. In fact, it was working fine a year ago - back when I started blogging, and I found out I had MRSA. They put me on gigantic sized bricks they called a tablet (It wasn't a tablet, it was honestly a fucking brick) for the MRSA and also the fun (also fecking brick sized) Cipro tablet, presumably for... I don't know, insurance, or something like that. Anyhoo, on those two tablets, I came back to clinic one week later (they were only for two weeks) and hit 80% in my pfts. And I rarely hit 80%. I'm not complaining about the 60 ish % I have, but I honestly miss my 80%.

I haven't seen my PFTs since I had my IVs started b/c that was the last time I was at clinic, and I'm not back until the beginning of Dec. I really hope that I've improved from 64% b/c if I have, it means that two things have worked - laughing so hard you fall over (Which I believe helps, even if no one else does) and swimming. I've only been twice, as last week, I had my cold in full blown 'Urgh I can barley get out of bed' mode and the week before that, I had to help my sister with something. But I went this week and managed another 10 lengths, which I'm happy about. I would have tried to stretch to 12, but I was knackered and getting progressively pissed at the people pointing out my cough (Why do people feel the unending need to point out the obvious! Yes, for fucks sake, I KNOW I'm coughing! Leave me alone already!)

The main reason why I want my LF to be over what it was, is b/c at 64%, its about 9% higher than what it was when I felt at my worst. It was a bad dip that took me down to 55% and when you get a sudden dip like that, it's not fun. I couldn't walk around school properly, and even though I'm not at school now, if my LF dropped suddenly I know I'd struggle at work and at college. I'm not saying 55% is the end of the world - hell, I know people with much lower LF than that on a daily basis. But my point is, when you loose a load of lung function, whatever it is, its hard to get used to. Hence, why I'd rather my LF crept up rather than crept down.

It might seem difficult to increase your LF when you're coughing a lot and just had a load of (seemingly pointless) IVs... but it's fun to do the impossible.

Wednesday, 25 November 2009

Nothing else to say.

Gone but not forgotten, yeah?

There's just no words to explain what you feel when you loose a Cfer. So...

For Jo, Phil and Court. And everyone else.

Monday, 23 November 2009

Arrrrrrrrrrrrrrrrghhhhh.

I'm pissed off with CF.

BIG TIME.

It's painful to find out that another person has lost the battle. Or that they've made the decision to go with dignity b/c they've fought all they can.

When I find things like this out, I react in two ways: I either get upset (obviously, which is understandable and how you'd expect people to react anyway) or I bottle it up. And I don't think about it. I try and keep busy with pointless stuff. And then when you're not expecting it, *boom* it all washes over you and you realise the truth.

And no amount of ignoring it, trying to pretend its not real, can fix it.

No matter how hard you try.

And then there's other people. Those who are waiting for the call that'll change their life. And it's painful to hear about how hard things are for them. But they're the strongest people you can know. And all you can do is hope they get that call in time.

I just.... I wish I could fix this.

Monday, 16 November 2009

Writer's block.

Or is it blogger's block in this case? Either way it sounds stupid. But [obviously] it means I can't think of a thing to blog about. There's nothing interesting about how I've got another cold, or how I've sat at home doing naff all b/c I'm lazy.

My Dad tried to explain film cameras to me again, and showed me how to use the flash gun for it too, but in all honesty, I was incredibly uninterested. I don't think its the cold - I just really hate film cameras when I can use digital. I don't agree with darkrooms (I stand about like a total pleb b/c I can't hear what my friends are saying, and my job is the shortest job of the lot and takes about a minute.) and to be perfectly honest, film cameras hate me. They utterly perplex me.

I think I've accomplished a lot today, which surprised me given the total lack of energy. I've done a few loads of laundry, the proper way by separating stuff, so things like my jeans don't ruin my hoodie (I love my hoodie!) and folded everything, made my own lunch (and we all know how tempting it is to just sit and whine for someone else to make it when you've got 0 energy, but I hauled ass to the kitchen anyway. I would have made breakfast too but I slept in till 12.30) sorted out some college work, attempted to fathom my film camera before my Dad helped and tidied the sitting room. This is all probably b/c I've drank several fortijuices and an enshake in an attempt to have enough energy to stay sitting up. (Which I fail at. A few times I gave up and just decided to lie on the floor in front of the electric fire.)

Oh and my painkillers have finally kicked in. I've had a wicked headache all day and painkillers never work on me until about 2 hours later b/c obviously they hate me too. Which is why I never relent to painkillers for pleurisy b/c they NEVER work. And that's not for lack of trying. When I ended up in hospital from pleurisy they had me drugged up on some pretty strong stuff, and I was probably a bit lucid for the day but I was still in pain. And its been the same way everytime I do crack and dig out painkillers.

I will admit that I haven't done nebs for the past two nights b/c it just hurts my throat too much, but I told Kate I would tonight. Kate has her own blog too, and whilst she doesn't have CF, she has PF. I will admit we talk on msn, webcams on, WAY too much, but it's still fun. B/c she lives in the US, I'm usually her personal alarm clock via facebook. B/c that's obviously how the cool kids do things now-a-days.

(I had to write the above bit b/c I've been wanting to blog all day and all yesterday, and as you can gather from the title, I had nothing to say. So she said 'Blog about me'. I have no idea why that is everyone's response but it's always a place to start I guess.)

Oh well. At least I finally wrote something.

Tuesday, 10 November 2009

Buses are fun.

I mentioned in the last post I went out on Saturday night. Now, I'm usually still quite good with remembering my meds, even when I've been out, but last week I totally forgot once I'd gotten home. Which means I totally broke my several month streak of never missing morning meds.

Fuck. I was proud of that.

The guy on the forum still won't piss off. Grr. It's so annoying as he doesn't even talk about anything to do with CF. When people ask him why in the hell is he on a forum relating to CF, he says 'My mate has CF' and then bangs on about whatever crap it is at the moment. So yes, homicide is looking ever appealing now. That guy clearly brings out the worst in me. I'm not usually this pissed at someone I don't even know.

I started swimming last week. I sort of underestimated how much effort goes into swimming. Like I've said before, it's been years since I actually went swimming that wasn't on holiday, and the first length in the pool practically wrecked me. When I was younger, I could do several lengths without stopping (although I went swimming every week back then, I didn't just randomly jump in the pool and shoot off) and halfway through the first length, I had to stop and hold onto the side railings whilst I registered that this wasn't going to be as simple as I thought. (I said to my Mum afterwards 'I'd forgotten how much effort goes into swimming. I thought it was just floating about a bit'. She laughed.)

Anyway, even though the first length took a lot out of me, with a few rests I managed to knock the tally up to 10 lengths. Which I'm quite proud of. I don't know when I'll next be going swimming but I know once a week is a good place to start, and then twice a week. To be honest, I can go whenever I like given my free swimming in public times.

I went to town today and discovered the following things when I had a coughing fit (b/c I'm that classy)..
*Yes, I'm coughing
*Yes, it does 'sound nasty'
*Yes, it's rude to stare, and I'm very aware of it
*No, I don't think you've 'had what I've got'
*No, I don't have swine flu and the people overreacting from my cough really do piss me off
*Yes, if you don't leave me alone I'll spork out your eyes. I just need to find a spork first, b/c they're pretty nifty.

Any CFer (or crappy lunged person) can sympathise with those things. People always stare when you have a coughing fit. A lot of people get the remark 'Oh, you should stop smoking' but I've never had that, maybe b/c I look like a kid, but then again, I've seen a stupid amount of kids who smoke.

On the bus on the way back, it was packed, so I had to stand. But I'm ok with that as all the old people and pushchairs need the room anyway. Something tells me all the 30-something perfectly healthy workers and business people who had seats of their own were just too rude to give up a seat for little me, but then again, you can't see my CF unless I decide to have a coughing fit there and then and pretend to cough, choke, splutter and practically die all over them in order to get a seat. Which is just too much trouble.

Something that is much better, however, is that I got my DLA into my account. A few weeks ago I got on at my Mum that she was still getting my DLA and I should get it now that I'm 18. So she phoned up the people and they had a mini shit-fit b/c they 'weren't sure' whether I was capable of having it going into my own account rather than my parents. So they sent a form round and I filled it in. And they finally got round to checking it and deciding that I can have my DLA .Which is why I had to haul my arse up to town and suffer the bus: to find a hole in the wall and get my mini statement to see if I got anything deposited into my (pretty empty since I bought my camera and laptop) bank account.

Anyway, yay. I've got nothing else to write but wanted to blog. And I'm sure that once I've posted this I'll think of something else to write. But sod it.

Sunday, 8 November 2009

Why you shouldn't give some people the time of day...

Anyone who goes on the UK CF forum knows that there's been a bit of... how would you put it... excitement the past few days. By the by, I'm not writing this to piss people off, I'm writing it b/c I want to and b/c bugger all else worth blogging about has happened.

And to be honest, to hell with it and I'm gonna blog about it b/c the main person involved probably wouldn't set anywhere near this blog should he think I've rigged his computer to explode or something.

Some people just take paranoia to bullshit levels.

Anyhoo, so this person wanders in, saying he has a friend with CF. Fair enough, I've seen people post in the past maybe asking questions about CF as their friend/boyfriend/girlfriend/complete stranger has CF, and they want to understand more or... whatever. But this guy asks questions completely unrelated to CF, which begs the question why didn't he go onto a forum more related to his problems.

All in all, arguments ensued and caused several threads to be locked due to everyone (including the Mods) getting severely pissed off. As it started on Friday, and I was at work that day, I missed the majority of it and when I checked the forums after getting home, I wondered what the fuck had gone on. In one day, this guy had managed to post like 30 times and get two threads locked. And then another thread had started up and the first post I made was to ask a mod to lock this thread too as even though I'd been reading for about 5 minutes, I already knew it was out of hand.

I got a cocky half arsed reply from the trouble maker saying something about if I'm gonna keep getting all the threads locked b/c I don't like what he says, it's my problem. Which proceeded to baffle me b/c if the fuckwit could learn to read, it was my first post in the whole thing and he was the one causing the arguments thus leading the mods to get all trigger happy with the 'lock thread' button. Oh, and if he could read, he would have spelt people's names correctly. (For god's sake, my name on the forum is Meggzzie, not Meggazie. And spelling mistakes really piss me off!)

The second reply I wrote was along the lines of 'Mods, please, or else I could actually kill this guy' which I believe is a perfectly acceptable response to some guy who continues to piss you and many others off. Funnily enough, he practically crapped himself in worry that some 5ft 18year old is gonna set out into the night after him, welding a meat cleaver, and he mentioned that if he showed that comment to the police, I'd be in big trouble. Which leads me to imagine, if he ever overheard someone say a comment like (in a jokey way) 'I could kill you for that' or anything along those lines, he'd clearly panic and trot off to the police station.

I mean, come on dude, strap on a pair or else we're gonna think its your time of the month or something.

Honestly. Fucking people sometimes.

So, the fact remains that there's someone somewhere quaking in his boots b/c of an offhand comment I made. It would actually be fairly amusing if he DID go to the police and say 'Um, so there's this 18yr old girl on a CF forum who says she wants to kill me...' (never mind the fact that I don't know where he lives and frankly, I'm quite happy not knowing).

I'm glad that people on the forums stood up for themselves and told him where to go, b/c otherwise he probably would have stayed around and asked other pointless and irritating things. He's said about 5 or 6 times that he's leaving the forum and then he comes back on and starts another fucking argument. So I'm sure I'm not alone in being driven to the brink of insanity by people like that.

On a brighter note, I didn't go mad from it all as I went out on Saturday night to the Hexham bonfire. Is it typical that for half of it I was standing behind the one 7ft person there? Of course it is. But fireworks are in the sky, not on the ground, so it didn't matter. After the bonfire I went to find my friends and a few of us had a good night going to the pubs and into Donnies. As a lot of our friends are now Uni students, and have probably pissed away half of their student loans in the local bars during fresher's week, not many people did come out with us, but the bars were completely chocka anyway. There was a stupid line to get into the club, longer than it usually is but the world and it's mother seemed to come into Hexham that night and decided to overflow the pubs and bars after the fireworks. We eventually got in and I was reminded why I don't like going out to places with loud music... I can't breathe in there.

I mean, does this happen to everyone with crappy lungs or is it just b/c I'm spectacularly weird like that? I couldn't keep dancing about like my lovely (ahem, drunken) friends for long as my boots were killing my feet and I was seriously not catching my breath. Me and two others found a sofa to collapse on and I left at 2am, which isn't too shabby considering the 8am wake up call I got that morning for college.

Speaking of college, I got my college ID, and I can officially say I have the worst photo ever. When people compare their photos, and they say 'oh, but mine's so crap', I'd think they're lucky they're actually looking at the camera, as smart arse that I am, I'm looking in the wrong direction as the woman who took the picture (on a crappy grainy web cam) spoke when she was taking the bloody thing. And I'm sure it hates me as when I wear the ID (you 'have to have it visible at all times on campus') it flips round so the photo faces to me rather than outwards, like it should.

Oh well. I'm sure it'll just be an interesting talking point.

Wednesday, 4 November 2009

'Yup, you're fucked.'

Pleurisy? Still? This is actually getting ridiculous. All I did was hiccup and it bloody hurt. I'm tired of writing about pleurisy and how my lungs hurt with every other fucking breath and how if pleurisy was a person, I'd like nothing more than to kick it's face in, and run off laughing and skipping knowing that the bugger will leave me alone.

Ok, so maybe that last part is new.

I'm gonna be stuck with it forever. I know it. The other night, I was laughing, and I had to [attempt to] try and stop laughing b/c it really hurt. Some days its bad, but other days it's barely even there, and thus it makes it twice as painful when it comes back. There HAS to be something I can do to get rid of it. I'm not pleading for more IVs b/c frankly, I'm too afraid I'll become resistant to them when I'm not technically ill, I'm just in agony when I hiccup, or laugh, or obviously if I sneeze b/c that pulls at your lung muscles like you wouldn't believe. Pleurisy aside, I hardly have a cough and I went on a walk the other day, armed with my camera as planned, and must have walked for more than an hour. It didn't really wear me out (aside from a massive hill, but that's to be expected) which is a plus, and it's the only exercise I've gotten lately.

My physio disagrees that walking around town and going through all the shops is proper exercise.

Anyway, I think the point I wanted to put forward is that I still feel shit where pleurisy is concerned, even after that mammoth of a walk, but IVs have worked in making me better in general. So... I can and I can't win. Which means I can wrap up this blog entry with...

I REALLY FUCKING HATE PLEURISY.

Um.. yeah. And now I'm sick of complaining. Can someone slap me please?

Sunday, 1 November 2009

Photo hacking madness.

I utterly love this picture. Mainly b/c of the photoshop job I did on it. But it's my own picture that I took and photohacked it on my own, so hence the fact that I'm quite majorly proud of it.

At college. Yes, I know we were meant to be working but you can only edit 20 something photos for so long. And bear in mind we were sitting in the same place for about 5 hours, and we left an hour early b/c we'd done all the work. We used Macs, and I'm on the fence about those things. Sometimes they're quite fun, easy and simple to use, and other times you want to run to the nearest bridge and drop the fucker off it. Like the time when it took forever to load the facebook page (oh, I'm a student; do you honestly expect me not to go on facebook when presented with a computer to sit in front of for several hours?)



And then there's these ones. I can't decide whether I like the full colour one or the part colour, part black and white. And then I noticed that this blog, and also CF, is sixty five roses. And that this picture is a rose. I'm an idiot. But I love it.

Photo madness aside, very little has been done. I haven't even started swimming yet, which is clearly down to pure laziness. I'm also wanting to go out and take more pictures b/c I'm now addicted to photoshop, despite the fact I'm limited on what I can do on it. I just click about and see what happens, and if I bugger the picture, I just click 'undo'. I didn't even do anything for Halloween. My sister cancelled her party for not feeling in the mood, but I'd decided I'd be too knackered after college to go, even before I knew she'd called it off. Turns out she and some friends had a pretty good night anyway and now have the resulting hangovers to nurse. It would have been funny if I had gone, as I'm at that young age where I can drink stupid amounts and not get a hangover, and thus piss off the other people who DO get hangovers.

Ah, the life of an 18 year old. We're so precious...

I'm pretty hopeful that these IVs have actually worked. I do still have pleurisy about b/c it clearly just wont fuck off, and I've no idea why considering that I know other people who've had it and completely gotten rid of it. Even with crappy lungs. At work on Friday I was lifting some boxes about and noticed that it seemed to make me out of breath, which I've not noticed before. But these are pretty much two tonne boxes with a hell of a lot of stuff in. I also noticed I didn't stop to cough, all day. I mean, I did cough in general but I didn't have to stop to sit down and catch my breath before I went a probably very attractive shade of blue...

I was running the other day. I can't remember why, or where to, but I was definitely running. Probably up the stairs to my room. But what I do very clearly remember, is that it didn't wear me out like it has done in the past. Which is always a really good thing.

Clumsy adventures

You'd think most of us with CF would have already had our fair share of hospitals, and would generally avoid the place like the plague o...