Saturday, 31 December 2011


Okay, woah. This year has gone by so quickly when I look back at it. It started off shit, I'm gonna be honest. Personally I put down the entire year that I was 19 as fairly crap. There were a couple of good parts, but the bad things just seemed to outweigh the good. I'll openly admit that loosing Lauren in Feb, and then Bree in May were two of the most difficult parts of the year, and possibly the hardest things I've ever had to try and wrap my head around and accept, I did however, have Gem to help me through all this and I helped her the best I could too. Life got better by the summer, and by the time I had my 20th birthday, things were looking up by a tenfold, including managing a 3 month streak off IVs, something I hadn't been able to manage for a while now. By the by, this isn't going to be a disgusting fluffy 'full of resolutions that I'll never really accomplish' kind of post. I sort of hate it when people make resolutions that they know they won't do, especially if it's shit like 'I'm going to be a better person next year'. Face it, if you were a twat in 2011, you'll still be one in 2012.

Anyway! So much has happened. I was looking at my list once again and a lot has been ticked off, I don't know how much exactly cos my memory is shite, but things that stick out are bits like getting my 2nd (and 3rd tattoo, which is a star below my 'Breathe' on my wrist, in memory of Loz, Bree and other people we've lost), and passing my driving test that once upon a time I thought would never happen. I'll freely admit that nearly 7 months down the line I'm not the best driver, and I've had a couple of bumps, and I still haven't properly taken another attempt at parallel parking since I passed my test, but how important is that really...

I made myself a little list of things I wanted to do throughout this year. I dunno if you could call it resolutions or not. But I managed to complete the majority of it. I applied for (and got) mobiltity (and my tres sexy little red Fiat 500) I saw my friends a lot more than I used to, now I generally see them every other week or so, or whenever we can manage to whilst juggling uni/college/jobs/placements. I passed my theory and my driving test (with just 3 minors!!!!) and so far I've stayed on top of my college work. I've got two assignments due in early Jan and I'd say about 95% of that is finished too. I FINALLY did something for my birthday this year. I went to the pub for a night out with my friends (and the boys plyed me with shots at every chance they got) which was the best birthday I've had in a while, and I went for an amazing meal with my family. I learnt sign language (and proceed to teach anyone and everyone the swear words, and that's about it) and definitely had less IVs compared to last year. I think I had 4 or 5 rounds this time, which isn't too shabby for me. I've already got my next round scheduled for the 6th, but we're overlooking this. I completed the first year of my degree and started the 2nd year, despite FREAKING OUT at the beginning of it all. My weight is steady-ish. Not up to where I want it, but I'm trying. I think the only thing I didn't do was read/finish more books. My attention span is awful, so I'm gonna work on that one. Ive got a pile of books I want to read and they're sitting there all neglected on my bookshelf.

 Anyway, now I'm off to spend new years eve with a lovely boy and some amazing friends. Hope everyone has a brilliant night and a fantastic start to 2012!

Wednesday, 21 December 2011

It's nearly Christmas!

I've turned into a complete child as now it's really getting christmassy, and I've got a small pile of presents waiting for me under the tree, including some from the ever lovely Gem :D

 (I'm not sure if this'll work but its the cutest gif ever of the despicable me minions, which I love!)

I know I haven't updated in forever, but I've been busy with stuff and frankly, I have a bit of writers block going on. But I'll be writing a post for the end of the year as always, including a tonne of photos :D

Saturday, 19 November 2011

IgE mystery

Does anyone else have issues with their IgE levels? Mine were 2000+ just over 2 1/2 years ago, I don't know how long they'd been this high as my blood was routinely taken when I was admitted with mega bad pleurisy pain. I was put on steroids after this, which I've been on since, and over time my levels have fallen, but they apparently should be ideally under 100. Clinic before last, they took some blood with the intention of finding out the levels, hopefully having them low enough to possibly bring me off steroids completely as they'd been dropping steadily since when I'd had the occasional blood take i.e. annual reviews and when I had clinic yesterday they were still 460, so I'm still on the steroids.

I don't hate them really, they help my appetite and I've had my share of bone scans showing that my bone density is still thankfully normal, however, I should get off them eventually, I don't really want to tempt things to go all crap. I'm only on 10mg a day at the moment, I've had the odd burst up to 30mg for 5 days at times like when my chest pain is worse than usual, and then always go back to my maintenance 10mg. It's just a bit annoying knowing that my levels won't go down to what they'd like, I know I've had (got..?) ABPA so obviously thats a factor, but I don't fully understand the whole thing anyway!

Other than this, clinic was okay, my lung function was up (thankfully! After 3 weeks of IVs they should know what's good for them!) and are about 60%ish, I'm not entirely sure as I don't get the percentages at clinic. My weight has fallen 2 kg within a month or so, and I got a right bitch for that, but in my defense my appetite is so erratic, and I do try, I eat plenty so I really don't know where the food goes. One of the mysteries of a CFer.

I think that covers it. I don't remember finer details really. I did have some student nurse sitting in my room all throughout clinic which was slightly entertaining, he didn't have a clue about most terms that were mentioned (cue very blank expression when me and my dr were having the IgE discussion) so I'm presuming he must be just starting out. Thankfully he didn't ask me 'when I caught CF' as otherwise I would have taken the piss fully and probably said something like 'I caught it from a gypsy at the fair' or something nicely ridiculous just to see if he believed me.

Saturday, 12 November 2011

Procrastinating like a pro

Why can't I just seem to get on with it and get my work experience sorted out?! It's only for a week but the fact that we were given no specific date (other than it has to be completed by xmas) and we have to go around and try and find a photographer who will put up with a student following them around for the whole time, I'm finding it so hard to just get on with it. I have two names of photographers and I don't want to send emails as other people have done the same with different photogs and they either take their time getting back to you or don't at all - which means phoning. Which means I have to ask someone else to do this for me and everyone else procrastinates to and I'm continually told 'why don't you just email them instead?' Err cos I've put this off long enough and it needs to be sorted sharpish.

~~ rant over, haha!

Other than this whole hoo-ha, I'm back to normal after the whole sats ridiculousness, and can't wait for these IVs to be over. The only bonus is that I don't do my abx nebs as everyone agrees that IVs are strong enough and you don't need to do abx nebs too - I still do my HTS though obv. I had a very longggggg discussion about whether I need a neb when I was in hospital as the nurses just got so confused with me and for some reason had my colistin down as a neb. Whilst I was waving the intermate bubble full of colistin in their face and explaining 'no, I have it as an IV, I don't need a neb' and this was followed by lots of 'oh so no neb, just an IV. You have colistin as an IV right?'

Yay frustration! I'm quite annoyed with myself really, I manage to stay out of hospital for yearsssss and then I get admitted three times this year, twice within two weeks. Definitely staying out of there as long as humanly possible; I don't see the point in me going in as I do at home exactly what I'd do in hosp, except have decent human contact and not need people to travel a 30+ minute journey and argue with parking spaces and ticket machines just to see me (which incidentally makes me feel really bad). The only time I actually shut up and deal with being in hosp is if its cos they have what I don't at home, i.e. oxygen. That said, I still complain constantly :P

I don't really have anything else worth saying but I thought I'd get back into the bloggy-ness and start sharing irrelevant stuff like this again :D

Saturday, 5 November 2011

And back again.

After getting out of hospital last Friday, I felt good. I had a couple of off days and a couple of good days. I figured that was just everything sorting itself out and I'd be back to myself in no time. So I went to college as normal on Tuesday. And halfway through my lecture I started feeling crap again. And then noticed my fingernails were turning blue. Brilliant. I felt awful, nothing seemed to trigger this as it started randomly an hour and a half into a lecture where I'd been sitting doing literally nothing (not even really paying attention... ahem. But does anyone?) So I left with a support worker, and she made me sit until the main woman from student support came up and then they could decide what to do with me; they weren't keen on me driving home and wanted to call a taxi, I said no b/c I refused to leave my car at college. So in the end they had two support workers follow me home in their car to make sure I got home fine - which I did, I just felt a bit blahh.

This was quickly explained by checking my sats and being met with a lovely number of 83%.

For fuck sake!!

We eventually phoned clinic and they said I should go to ward 52 if I felt I needed to. I wanted to avoid hospital at all costs, but its a bit inevitable if you've got sats issues and no oxygen at home. I waited it out until about 9ish and the headache was actually crippling me, so I packed a bag (again, sigh) and my dad took me to EAU. A couple of nurses saw me who'd been on shift last time I was in and started cracking jokes about how I'll need a permanent bed there at this rate. What can I say, I just can't get enough of the damn place(!)

I had to wait about 2 1/2 hours until I got a bed. Ironically my sats decided to behave and be at 95% when I was in triage. Great... The whole time I was waiting, I was pissed off, and upset, and in pain, and they can't give you anything for it. I felt like my head was going to split in two, I could barely keep my eyes open from the pain and I was starting to just get physically and emotionally exhausted.

When I finally got a bed in a cubicle, the dr came around and did all her doctor-y tests. Sats at 97. WHAT THE ACTUAL HELL!? I felt awful, and my sats were just being morons at this point, I know what I feel like with crap sats so I didn't understand why they seemed fine on the machine. The dr seemed confused as hell with me so just gave me oxygen to see if it helped. It did, my headache went away, everything seemed clearer and i felt almost human again. Typical that this was at 3am and I wasn't tired anymore. Oh well, in time for a 3am xray!

I'm having so many xrays these days I'm fully expecting to end up with some trippy superpowers.

The next day, the physio came in, and doing physio with the sats monitor on and oxygen off resulted in a 170+ bpm heart rate and sats steadily dropping to the low 90s until the oxygen was shoved back on and they evened out again. I was still on EAU at this point too. That evening I got moved up to 52, back in the same shitty isolation room as there was literally no other rooms. Apparently there's a lot of CFs in at the moment. I felt bad taking up a bed as they're a lot iller than me and a fair few of them are in and out all the time. Then again, they have freeview, opening windows and fridges in their room. I had an alarm outside my door that wouldn't shut up. The sympathy was limited!! Because of so many being on the ward, I didn't get the CF menu, which meant that evening resulted in the most pitiful baked potato and a tiny pot of grated cheese. Don't eat it all at once(!)

Genuinely, I laughed at this for 20 minutes, expecting it to be a joke. Sadly, it wasn't. So I settled for eating my yoghurt and my jaffa cake bar. The next day wasn't any better food wise either - Im always asleep when they ask me if I want breakfast so I never want anything, and at lunch time, there was literally nothing left, except another baked potato (which I passed on this time, strangely enough) or a sandwich, which I'm not keen on. So I ate my pringles instead. Luckily my dad was already on his way to pick me up and take me home, as my sats were behaving all morning off the O2, and my dr told me to 'stop checking your bloody oxygen saturations' cos he's convinced that when I feel crap, I check them, see a low number and panic myself. That's not true, because I know they're low before I even check them, and I don't check them constantly. I didn't bother arguing this though. The sats monitor has been put away now anyway, haha!!

Anyway, yes, I'm out again and determined to stay out, as that place drives me a little bit insane. Plus, the nurses give evils to people when they leave 30 mins after visiting time is over, which is a bit over the top but what can you do! At the moment, I'm still being too lazy to organise (or contact anyone about...) my work experience, and I'm currently debating on whether or not I should go on the London trip with college at the end of Jan - we had a vote and people seemed to prefer London to abroad, cos they're boring fucks, so London it is, and it'll be 4 days full of traveling there, and back (which isn't going to be fun if its a coach, I think it takes at least 6 hours one way) and the rest of the days filled with walking around galleries and various other crap art places, which I actually HATE! I wanted to go abroad and get cool pictures. I've been to london before, I've done all that stuff, and I avoided the galleries the first time for a reason! Plus, this suggests that there's going to be a lot of walking, possibly a fair amount of stairs. Not sure if I'm prepared to pay £125 to exhaust myself, and I've got to hand the deposit in by Tuesday so it's decision time!!

Friday, 28 October 2011


Those crap sats resulted in me getting admitted.

I felt absolutely awful, three days of sats refusing to budge above 92/93 was taking it's toll, I was confused and my headache was getting ridiculous. In hindsight I probably shouldn't have been driving a few hours before we decided to phone up the hospital, who told me to go to A&E, through to EAU and take it from there.

I got there and my sats decided to stay at 95(!) A couple of hours later when they next did my obs, they dropped to 90 and along came the oxygen, which killed my headache pretty fast, so I was right in thinking it was the sats giving me a headache. It's sort of a shit victory - yay I was right... but being right involved needing O2.

Anywayyy, as it was EAU it meant nothing short of every test under the sun. So xrays, ECG, blood takes, blood gases, constant sats, BP and temp etc etc. I was properly nervous about the blood gas, especially when the Dr went 'Don't worry, I'm good at them!!' (It sparked a sort of over confident feeling, as if he was trying to convince himself as well as me) but it barely hurt, so I guess he really is good at them! He was a cool dr, he was young and we talked loads; it's always nice to have chatty drs rather than the type who are all quiet and moody.

I spent about 16-17 hours on EAU in total, I was meant to be moved to ward 52, which is the respiratory ward with a CF unit, but there were no beds at all, so I was moved to a cubicle on EAU until Thursday afternoon when I finally got to my ward. There were still no beds on the CF bit (there's only about 6 CF beds on the unit I think) so I got the crappest room of all, which was the only one available and is clearly used for either people they hate, or as a last resort - its round the corner from the nurses station and for some fucking ridiculous reason there is a buzzer and light on the wall outside the room that goes off every. single. fucking. time anyone on the ward presses their buzzer. It's such a design fail as it really should be in the nurses station instead of round the corner practically in the patients room. I pissed off a nurse for complaining about it too. It's not my fault that of all the things I can/can't hear, that is bloody loud and I certainly can hear it!

So yeah, crap room, not a CF room so I had none of the luxuries as I did last time - no tv, no fridge, no opening windows...!! Obviously they have those crap pay tvs put they're not worth it. There is actually a cinema in the hospital, and the woman who works there came around and asked if I'd like to go to the cinema. I was a bit confused with that one and I said there wasn't much point if it wasn't subtitled b/c of my hearing, so she left instead. I kept thinking how I should have gone regardless, it would have gotten me out of the sodding room! I was only on O2 until I was moved to ward 52, when the physio came up to see me and my sats hovered around 95 (dropping to 93 when she wasn't looking, I have a coughing fit and they shoot up to 97, make up your mind!!!) so she took the O2 off me and I was fine without it, but they STILL wouldn't let me leave, wanting to check my sats overnight too.

I'm not entirely sure anyone actually did check my sats that night though. The nurse came in around 5pm and tried to give me my fluclox that I have at night, so I corrected her and she said I'd be given it at 10pm instead. I had some veryyyyyy nice visitors who cheered me up (and ate half my haribos) and then the nurse came around at 8.30 and said visiting time was over, boooo :( No one actually came in and gave me any meds or did my obs or anything as far as I remember that night. Last time a nurse had been in my room was the 5pm fluclox confusion. SO! 10pm rolls around, and no one comes by. I had my meds with me anyway, and I'm not a child so I'm assuming I'm allowed to self medicate with my night meds. However, it was really bloody irritating that no one came around as I needed saline, syringes and needles etc so I could give myself my IVs (I already had the IVs themselves as I'd brought my ready made ones from home). At 11.30pm it was getting stupid, I thought maybe they were doing their night rounds and would get to me and my crap cubicle last.

Obviously not.

I went to the nurses station and they practically blamed me for not getting them sooner. Excuse me for doing your fucking job for you!!! Ivs done and all that jazz, I eventually fell asleep and woke up at 4.30 am with a hell of a coughing fit that really, REALLY hurt, I couldn't tell if it was exhaustion from how much I was coughing, my ribs hurting or my lungs, but something really hurt. No one had been in my room (and I was fully ignored all night as far as I'm aware) as my light was still on (they always switch it off if you fall asleep with it on). A very pissed off me was woken up at the crack of 6.30 to do my own morning IVs. So I spent the entire morning waiting for the dr who basically told me right away I could leave, yayyyy!!

Not doing that again, that's for sure! The bright side is that they let me have the food off the CF menu rather than the shitty normal menu, and it's actually edible! There's a load of choice and they've definitely improved it. I can't help but imagine the other patients staring wistfully at the nice food (and randomly, pretty trays! Haha, instead of a crap beige tray, I got a rainbow stripey one, how nice!) whilst they keep a nervous eye on their own food which is meant to be 'beef casserole' and looks nothing like it.

I think the moral of this story is, try not to catch a cold, which goes to your chest, causing a bitch of a chest infection, resulting in needing 3 weeks of IVs far sooner than you would have preferred, and fucking up your sats royally so you have to spend three days in hospital, half of which were tethered to the wall on O2, before you can finally go home and enjoy decent tv, internet (priorities...) company and endless decent cups of tea :)

Also, Gem is awesome :D
My war wounds

Pretty late. Pretty bored. Pretty sick of the O2 already...

 My barcode :D

I did enjoy that tray... Food wasn't bad either!

Wednesday, 26 October 2011

She returns... with a hell of a ramble

I've just worked out I haven't blogged in 21 days. Feels a bit strange to be wittering on again so bare with - Im currently battling with a 3 day strong crappy sats headache (lowest being 85%, highest being a bit pathetic at 93%... ffs).

So yeah. I'm trying to remember what I've done over the past 3 weeks. Bit of a challenge in itself considering I have trouble remembering what happened yesterday. Mostly I've been at college, its a lot better than first year I'll admit - whilst we have been thrown right back into it and have already completed the first module consisting of three projects, its fast paced but enjoyable. Plus the social side is improving too; I'm very quiet around people I don't know very well, its a hearing thing, but it's getting better, and knowing sign language is helping even more, as theres a woman who can sign too, and we have a laugh either having complete conversations in sign with everyone else wondering what the hell we're saying, or teaching the others various signs... mostly swearing, haha!

College aside, my health has been... shit. I was doing fine, my last IVs did very little, I blame the constant insomnia I had from the last week of them exhausting me so much that the IVs didn't end up working because of it (don't argue with my logic, it works for me) but I was doing well enough that at clinic last week my dr sent me off with just another appt in a few weeks time, no ivs or anything needed or scheduelled as everything seemed to be going well enough - he'd also ordered some blood taken so they can check my IgE levels and see if we can get me off pred, or at least lower the dose; at their highest a couple of years ago, they were 2000+ b/c of my ABPA, and my levels really haven't been checked at all, aside from my annual reviews, and last time they'd come down to below 1000. However, they really should be below 100. So if they've finally come down, I can get off pred, which I've been on the whole time since I started it nearly 3 years ago. Talk about longterm.

But THEN... I caught a cold. Usually I'm not too bad, I have managed luck in the past to avoid it going to my chest, maybe picking up a bit of an increased cough but nothing worse. This one knocked me for six, and showed every sign of a hell of a chest infection. We're talking low sats, the resulting headaches, coughing 24/7 with a horrendous cough, hemos, coughing till I throw up (resulting in loosing the most amazing cake I'd ever had, so I went back and got one again the next day, HA!) general exhaustion and feeling like crap. So the only choice was to phone the hospital and say I needed IVs. The dr agreed over the phone and had the form sent off before I arrived a few hours later. Unfortunately when I got there, it was the dr I hate, with a passion, who saw me. My lung function dropped 10% in a week, and he said 'well its still quite good' - my ARSE. I don't know why he won't listen but I don't feel like someone with the lung function I have. At the moment its in the 50s, I'm well aware some people would give their left arm for a lung function like that, but I just don't feel like it's that high myself. I'm a bit backwards, my lung function completely doesn't reflect how I feel. It doesn't even help I only managed one blow on the machine before the tech took pity on me and asked if I'd like to stop, as the coughing fit after that one attempt was verging on ridiculous levels.  

So IVs were started, I got a lecture off my physio as I said I was too exhausted at the moment to get past 10 minutes of physio, my dietitian took pity on me and refrained from her own lecture on my weight, accepting that b/c of how crap I feel, I can't help loosing weight right now, and it wasn't very much. (But I am trying - the amount of kormas I eat, and constantly stuffing my face with crisps and chocolate. It beggars belief how I loose weight really.) And I also had the usual argument with the dr as I just generally dislike him and I'm sure he doesn't like me as I'll admit that I'm not your average patient and anything that is strange and unlikely will happen to me - probably out of his comfort zone compared to patients who follow the rules and get ill when you'd expect them too and only get side effects that he expects. Okay that sounds like a digression but I'm sure I have a point - for example, this insomnia lark, I'm positive that IVs were to blame, and as soon as the course of IVs finished, my appetite came back and I started sleeping again. I told the nurse when I went for a port flush, and she relayed it back to the dr. Apparently he said that its very unlikely the two are related as insomnia isn't a listed side effect for either of the two IVs I was on at the time. So basically, I deviate from the book, and he doesn't like me for it. Or at least thats how I feel.

This course of IVs seems to be going differently than they usually would. I'm on colo and ceft, and colo usually sends me into a drunken mess for at least a few days. This time that hasn't happened, and although I don't exactly miss walking into walls with more frequency than usual, it's a bit unsettling. I'm not sure if the insomnia will come back this time or not. I didn't sleep aside from maybe an hour or so on monday night (after starting IVs earlier that day) and it can't be just random as I never have insomnia, not like this. If I do, it might keep me up a few hours, but I don't see every sodding hour up till about 6 or 7am, drift off, then wake back up and fail at any more sleep, resulting in effectively being awake for almost 36 hours straight. I did sleep last night, but I'm not sure how much, and I'm not sure if it was just pure exhaustion from coughing horribly, constantly for a couple of hours with no let up, and waking the entire house up in the process.

My head is now absolutely pounding now so I think I'll just add a few photos and then go stick my head out a window as per Gem's advice and see if we can't get my sats back up, at least for a bit.

 3rd project - Hands face feet. Creeped everyone out with this doll, haha!

 First project of 2nd year - Mask

 I got a new tattoo :D This was taken a couple of hours after it was done, it's healed up now and looks  a lot better :)

I got a hold of my xrays along with my med records :D The one on the right was 2004, when I was 12, and the one on the right was taken march this year when I was 19. My port looks different, that's cos it is - they're my 2nd and 3rd ports.

Wednesday, 5 October 2011


It's done.

And it was the scariest thing EVER!!! I remember saying that I loved it last year, which I did. This year was different as it was a LOT higher, and somehow a lot more scarier on the edge of a building compared to the wrong side of a bridge. To stop any of us spontaneously falling over the edge, we were attached to a line via the harness whilst we waited. Pretty sure I was shaking the ENTIRE TIME!!!

If you're cool and have me on facebook, the album of the photos (plus the ones from last year) are here
And I've put them on Flickr too

If you think I look scared in those photos, thats cos I really, REALLY was! I'm so scared of heights. I'm pretty sure that I kept my eyes closed for the majority of the actual zipslide, and the brake was particularly painful when it smashed into my sternum, but I did survive and I'm still collecting fundraising money, so it's all good and worth it!

Here's the video :D

Wednesday, 21 September 2011

Car washing adventures.

I checked another thing off my list - I went through a car wash with my car.

Yeah yeah, I know, something really simple. But I'm one of the most laziest people you could know, so I never get round to doing things. At least it was an experience.

Because, as you should know, me being me, I managed to not close my door properly. The car wash had a code thing where you have to lean out the window and enter the code, but b/c I'm pint sized, I just got out the car and entered the code that way. And obviously didn't shut the door properly - half way though and my sister pointed out that there was drips coming in through the door. I quickly opened and closed it again, and two minutes later she said it was still dripping; this time my seat belt had caught in the door stopping it from being shut completely. Quickly closed it again, and checked the car whilst waiting for the car wash to do its job - my seat belt was soaked and the back seat was fairly splashed. It wasn't bad, it was just one of those things where people go 'only you could have managed that...'.

On the bright side, my car is nice and shiny. But for future car washing adventures, I think I'll stick to the power hose, they're just more fun.

Oh anddd my zipslide is less than two weeks away :D I've reached half my target, thanks to the lovely people who've donated, but I think I still need that final push. I'm actually getting terrifed. I'm so scared of heights. Even when it's just something on tv and they pan over the edge of the building my stomach still jolts.

Sunday, 11 September 2011


I know, I know. I've not blogged since the dinosaurs. Oops. I'm on IVs at the moment, after managing to go a full 3 months for the first time in what feels like a long time, and dare I say it, I almost felt like I could postpone the IVs even longer, if I wanted to. I didn't - college starts back on the 13th Sept and I want to feel as well as possible, unlike last year, when I finished them about a month before I'd even started, and began first year feeling like, for lack of other words, complete shite.

So far so good, these Ivs have done their job and the cough that was starting to crop up again got battered down, to sound less like a horrible chesty gremlin and more of a pathetic cough that does nothing. Problem is though, this pathetic cough is just a pointless tickly bastard that won't piss off, and seems to take a lot of breath with it, it's hard to describe. I think it might be down to the mini cold I caught on Saturday and it stayed for almost a week, but thankfully went away. I was drinking water with those vit C tablets in like there was no tomorrow.

I cough all night, its soooo irritating. Nothing works to stop it, not even the old faithful cup of tea. And alongside this, I have the mother of all insomnia. I don't know what triggered it, but for the last four nights I have gotten fuck all sleep, and it's starting to severely piss me off. I want to sleep, I'm shattered, right up until I close my eyes and try and sleep. Then BOOM, hellooooo sleepless night. I see every hour. It does my head in! I don't know why I can't sleep, I've gone through every logical thing I can think of - there's nothing bothering me, my meds haven't been changed, insomnia isn't a side effect of IVs and I've never had this problem before. There's nothing like sounds or lights keeping me awake, I don't drink coffee or down loads of sugar right before I sleep.

It just doesn't make sense.

On top of this, I can't seem to eat. I'm not hungry, and still try to eat but just can't. I haven't eaten a full meal in days and it's getting stupid. I'm not sure why, I think it's down to the 24/7 non stop tickly cough, as I feel sick from it and just not hungry at all. Even when I'm hungry I just can't seem to eat. It reminds me of when I was on cipro and loose my appetite completely. But I haven't touched the stuff in well over a year and a half. I went out for a meal on Thursday with some friends and barely ate my korma and chips (I love korma and chips beyond anything so I got really pissed off at myself, I wanted to eat the food, I just couldn't) so ended up having it packed up as a takeaway.

As college starts back so soon I NEED to fix myself. I just don't know how. I can hardly drive there and back when I feel like a zombie.

Thursday, 11 August 2011

Checking off the list.

Blantantly ripping this off Gem, but as I can't think of anything to blog about anymore, you're getting this - My list, and what I've crossed off so far, with a little explanation for each feat. I'm still adding to the list now and again so there's always new stuff I want to try

* Make friends with people I wouldn’t normally be friends with
Done this through blogs, college, through the CF site etc. Basically people I wouldn’t have expected myself to be friends with b/c of maybe age, or different views, but they actually turn out to be amazing people
. And yes you, you’re amazing.

* Raise money for charity

* Get rid of old junk
Much more easily said than done but I did this when I switched rooms

* Start exercising more (some form of physio)
… dammit.

* Smile at strangers
I usually smile a few times each day at people I don’t know. I just think it’s nice for everyone to see a smile when they walk past rather than a grumpy git

* Spend a night under the stars
Did this years ago with friends, slept outside on a trampoline, I think it was actually around November at the time and this meant it was bloody freezing and we ended up coming inside and sleeping on the sitting room floor at  6 am but it was past dawn by then

* Gain more weight
This is a very temperamental one, my weight goes up and down all the time. The highest Ive been was 46kg, atm the moment I seem to hover around 43-44kg

* Go to a zoo
When I was an ickle little kiddy I went to Belfast zoo and fell in love with the polar bears

* Wish on a shooting star
I saw one when I was about 8 I think, I can’t remember what my wish was so I don’t know if it came true!

* Pick my own strawberries
Dad grows strawberries in his garden, and I helped pick some, but mostly I walked around taking photos of all the plants and fruit and veg he grows

* Keep a private, paper journal
I’ve done this since I was 13 and still do

* Save money
I’m so unbelievably awful at this! My student loan has all gone now and went on all sorts of stuff like my camera, camera stuff, clothes, food, my ipod, train tickets, more food, petrol etc. I'm trying again and resisting the urge to go on random online spending sprees cos I think I have enough jeans and dvds. What am I saying? You can never have enough. But I'd like to see a happier looking amount in my bank account. So *humph*

* Throw a surprise party for a family member or friend
I’ve never thrown one myself, but I did attend one a couple of years ago for my great uncle. I don’t think it counts though as I want to help plan it… although not be in charge as that will fail oh-so-badly!

* Have a lazy weekend (I kinda had a lazy year-and-a-half!)
I consider my lazy year and a half the time between finishing 6th form and starting college, as I was at total liberty to do what I wanted, and did a Saturday photography course and had a Friday job for about 6 months. Obviously the other days were either lazy days or camera mishes

* Recruit people to be organ donors
I know a few people who have signed up (including my mum) or at least thought about it and considered it. I have a habit of looking at the back of people’s drivers license to see if they have the organ donor code on it

* Have a clearout/sell unwanted stuff
We had a few car boot sales and got rid of a few things, plenty left, believe me!!

* Swear less (I think I did the opposite of this)

* Do random acts of kindness
Sometimes I offer to do things that people might not expect me to, and its random and kind so that all counts

* See Northern lights

* Ride a water jet ski

* Go on holiday with a friend

* Get a job (even if it was only temporary)
6 month job which I left after my lung function kept decreasing and I wanted my Fridays because truth be told I hated the job and it was just draining my energy

* Run for charity (ok, so running is a bit optimistic. But y'know what I mean. Like a 5 or 10k or something)

* Read an entire book without putting it down
Did this with the 5, 6th and 7th harry potter books the day they came out

* Own a car
Thank you mobility!

* Have a part in a local theater play
When I was 9 I played an orphan in the play Annie, I didn’t have any speaking parts but I did have a solo dancing bit in front of the entire audience during a musical number!

* Visit a waterfall/Stand behind it/Take ridiculous amount of photos of it

* Learn to drive
I started to learn in July 2010

* Pass my theory test
4th January 2011

* Pass my driving test
7th June 2011

* Watch the sunset and then the sunrise (in the same day)
I’ve watched each separately but I’d love to just sit and watch the sun set, stay up all night and watch it rise again. And obviously I want photos!

* Own a pair of designer heels

* Go to London
July 2009, courtesy of make-a-wish, it was AWESOME!

* Read some classics

* Ride a Harley

* Go on holiday somewhere abroad and sunny :)

* See the Script live
19th march 2011, thank you Ayesha for the tickets! I took my cousin as Ayesha couldn’t go, she was still recovering from her transplant a month before and couldn’t be in crowded places

* Pass 80% in PFTs
I’ve managed this a few times but only when I’m mega well. Now mostly it sits anywhere between 45% and 75%

* Own all LOST seasons on DVD
Oh yeahhhh

* Get College qualifications
Ive got the level 2 diploma from the Saturday course, I’ve completed level 1 BSL and I’m halfway through my foundation degree in photography

* Learn sign language (Level 1 BSL course completed (: )
Level 1 BSL taken in June 2011, I absolutely loved the course and really want to do level 2 and 3. It’ll just have to take a lot of saving up as they’re expensive!

* Get 'Breathe' tattoo
I did this in may 17th 2010, and I love it!

* Get some form of I.D.
I got my provisional license a couple of months after I turned 18, as lets face it, I needed it. I’ve now got my PINK license and a passport. Take that people who think I’m 14!

* Watch the clouds go by
It’s so peaceful to just lie down on a field and watch the clouds. I’ve also done that watching the stars too

* Go rock climbing again (of some description)

I went rock climbing at a sort of event organised for a few deaf people before we went into further education (6th form). I made some really good friends that day, we were all deaf so were in the same boat more or less, and we went to Keilder where we did a bunch of activities, a zipslide (not as big as my charity one mind you) rock climbing a 30ft wall, which I LOVED (and even raced and beat the boys up it :D) canoeing and making your own raft. It was a really good day but I definitely loved the rock climbing the most, so I want to try a bigger one :D I also loved abseiling back down!

* Go quad biking
My friend’s brother had a quad bike and we tore up a field going round several times, till it decided to stop when I was on it, halfway across the field. I don’t think I broke it, it was just having a hissy fit

* Go to NYC

* Tell people I love them more regularly
I’ve mostly managed this, I tell people I love them more, especially when I think they need to hear it, but for some reason it’s always been a difficult thing for me to say as I don’t like it when it’s just thrown around

* Meet an online friend in person
I met Sammy and Ayesha In summer 2010, we had an amazing time in the metro! I’ve also met some people who I knew through friends but had never met in person before, it’s odd after talking so much online you meet someone and they turn out to be different to what you thought they would be or sound like!

* Be unique

* Do a Zip slide
Tyne bridge done, next time it’s off the BALTIC!!!

* Drive across Route 66

* Fall in love

* Get on the FdA Commercial Photographic Practice course
BOOM, sit the fuck down

* Complete it

* Get a 2nd tattoo
Hope in Chinese on my neck. I have a couple other ideas that I like but I’m pretty sure my parents won’t be impressed if I get more..!!

* Be in a pub lock-in

* Ride in a limo
Me and several friends went in a limo to the year 11 ball in summer 2007, and I also went in one through London for my make-a-wish!

* See the Eiffel Tower

(and obviously take the overdone-to-death-but-I-want-to-take-them-anyway photos)

* Go to Nandos
Oh-so-many times. It’s so lovely!

* Complete the 365 project
More than halfway through this! I quite like some of the shots I've taken, others were just random things that I saw or thought were funny. Some are properly crap quality as I'd used a crap camera phone or my iPod, but now I'm trying to make sure I remember to use my Nikon, or at least my small point and shoot. Some are still taken on my phone but since I got a new phone a few months ago, this one is better as it focuses and has a flash, so at least what is better quality than it was before! It's also got an app for photo effects which I use to make an average boring thing look slightly more interesting

* Have a photography job

* Move out

I have no idea when/where it'll be, but I will one day. I also need a room mate as I don't think I'd like to live alone. I get creeped out. Plus if the phone rang, I'm screwed. And then there's the fact that I'm so clumsy that I'd probably trip on something and mangle myself in some way, so they're have a dual purpose.

* Go to a football game
I’ve done this a few times, mostly I went with my dad, I used to be a proper tom-boy when I was younger

* Send a message in a bottle
I’ve done this before with my uncle and older sister years ago on holiday in scotland but I want to do it again!

* Take underwater photos

I have an underwater lomo film camera I just need a nice underwater place to take the photos, and to actually remember the camera when I go

* Knock back a lit sambuca shot
That wasn’t exactly nice. I hate sambuca b/c the strength of it when it hits my throat makes me cough and practically burns my throat

* Take my car through a car wash

* Go to the pub drinking with my Dad
Haha obviously. I’ve been to the pub with him on new years eve and also some family parties where he bought my drink

* Stay up all night till the next day at a party (a few times tbh)
Well who hasn’t?! 6am deep whispered conversations were so fun!

* Let a stranger buy you a drink (nothing dodgy)
A guy bought a round of sambucca shots for himself and my friends, obviously we watched the entire time to make sure we weren’t spiked or anything, but I think he was just a generous guy (who was a tad tipsy)

* Have my fortune told (If they say I'll live a long healthy life, I WILL laugh..)

* Meet some extended family

* Kiss a stranger
Who hasn’t?! Ahem, anyway, moving on…

* Go to a music festival (and camp there?)

* Rent out Mayfield Studios or Banana Studios for a photoshoot

I've done shoots in college, but I think I'd just love to do one in a studio off college premises to make it feel more professional (i.e., not have the tutor walk in on your shoot and pick at things when you've got it perfectly how you want it) These places do cost, but with a student card, banana studios is £20 for two hours which isn't insubordinate. Mayfield is £20 for one hour, still enough time for a shoot.

* Witness and take pictures of an epic lightning storm
This is SO. FUCKING. DIFFICULT. So I'd love to go somewhere (from a safe distance) that had a massive lightening storm, rather than the one flash every 30 minutes we get in the UK, cos I'm not psychic and never know when to press the button. Even when you think a bolt is coming and you hold the shutter down taking multiple frames, you still miss it!!

* Be remembered

Tuesday, 2 August 2011


This years zipslide is on 2nd October and I've just signed up for it :) I'm not sure how similar it'll be to last time, as last year it was off the Tyne Bridge, and this year it's off the Baltic. A very very very high building. The lift itself is practically an extreme sport as it moves so fast! I'm excited though as I love the adrenaline rush you get! I've already made a justgiving site, so feel free to post it around and in return I'll give you one internet-cookie. I'm not sure how that'll work but it's the thought that counts, right?

I know I've not blogged lately but that's b/c I've got nothing to write and partly just can't be arsed... haha! My birthday is tomorrow and I'll be the grand old age of 20. I feel old! Me and my family are going out for a meal which will be nice. And I've got an envelope of presents from Gem which I'm opening the second midnight goes, as they've been taunting me all week but I wanted to wait till my birthday. And midnight is my birthday so it counts! Seriously, I generally don't care about my birthday, but put presents in front of me and I digress into a 3 year old.

Frankly I think it's the wrapping paper.

I'm also going out on the Saturday after with my friends. We'll be going out to town and probably getting royally shitfaced, which is what normal 20 year olds do! I rarely do anything for my birthday so I'm looking forward to this and hoping it'll be an excellent night out. And then I'll have to wake up on Sunday morning and untag all the horrendous photos that crawled their way onto facebook... 

I had clinic yesterday and for once everything was good. Weight was 43.5kg (obviously the mars bar I ate before setting off paid off) and my lung function was good, I literally went purple from trying so hard and coughing so much, but I was determined to get good results. I asked for IVs before college starts in Sept (vague, but we haven't been given a specific date. Brilliant. Thanks.) so my (new, did I mention that?) dr said 1st Sept for IVs. That'll make it 3 months since my last IVs finished. Personally I think that's just pushing it a bit but if I need them closer then I'll just get them moved, as there's no point in IV-free summer if you feel crap for all of it. The (new!) Dr has said something about bringing pred down as I've been on 10mg consistently since early 2009.

Anyway, onto the explanation of the new Dr! He's been at clinic for about a year or so, I saw him once or twice if my usual Dr was busy (er, probably eating lunch and pulling his trousers up so high, a la Simon Cowell). The last couple of appointments I've seen this bloke instead, and I get on with him a hell of a lot more, and it seems he's my permanent Dr now, or at least I can hope! He actually exists in this century too - when we were talking about whats a good time for Ivs, he said get your phone out and check the calendar (and got out his touch screen too). I don't think the other Dr even HAD a mobile phone. So yeah, now clinic doesn't seem as hell-on-earth as it used to be. Yay!

Monday, 11 July 2011

Harry Potter and the Deathly Hallows part 2.

I'm really apprehensive about Harry Potter 7 part 2 coming out. I don't mean in a "I'm a hardcore fan and I'll be gutted its over' way (although, totally true) more, b/c when the trailer first came out, Loz said that she was worried she'd not be around to see the film when it was finally released. People told her not to worry, that she'd be fine, and that she'd be around to see it.

The film is released on Friday 15th July. It'll be one day shy of the 5 month anniversary of her death.

I just can't really believe it's been that long.

I bet Bree's pretty pissed she's not here either; I know she was a lover of the books, and liked the movies too.

There is a cheerier note here however. Kirstie got her call for lungs, third time lucky and it went ahead! So far she's doing well and everybody is so pleased - she was very ill right up to the point of getting the call, and had been placed on an ECMO machine which essentially does the job of the heart and lungs, so that her body would hopefully hold out until she got the call. There's still a long way to go recovery wise, but at least the waiting is finally over.

So happy it got here in time, and that she can finally be able to enjoy her 2nd chance at life :)

Friday, 8 July 2011

I'm still here..!

I wish I had the energy to have a job but I know that isn't happening. I mean, even if I did, it's not like I'd manage to get one anyway. They always find reasons. Besides, its not necessarily the job I want (although, yes, being kept busy and not vegging out on the sofa would be nice...) it's more the money, haha. I'm currently out of £1,200 b/c of several reasons, one being the cost of the sign language course (which, by the by, I have completed, and LOVED it! It was fun, I learnt loads, and definitely made some amazing friends) The other reasons I'm just not really putting out there, b/c I don't feel like it mainly. Let's just say I've had way too much bad luck this year. I wish I could say I went on a massive spending spree or something, but no such luck... I'm pretty much just waiting on my next student loan, which won't be till I'm back for 2nd year, and also relying on my DLA payments, which have been fucked to hell. I checked my last statement and apparently I seem to be getting one load of payments every now and again, instead of the consistent 1 payment every week.

Dear bank balance, get well soon xxx

Anyway, yes, the sign language course was SO COOL! I was a bit annoyed that I had to pay for it when I found out the majority hadn't for various reasons (i.e. being on job seekers, various other benefits, or being under 19. Although they're scrapping that and everyone has to pay as of Sept 2011. Add that to the new uni students having to pay about 9 grand a year... Ouch. After all that, if I hear one more thing about unis or the government needing more money, I'll laugh so hard I'll be in danger of rupturing something) I learnt a hell of a lot more than I realised, and still remember a lot too. I won't be doing the level 2 course though, at least just yet, partly b/c it costs even more, and secondly b/c I just don't think I'd be able to juggle full time year 2 of photography, and a part time sign language course that lasts for a few months. So it looks like something I could do when uni is all finished and done with. And hopefully in the meantime I'll pick up and improve my own signing from the interpretors at college.

My last hosp appt was sometime in the middle of June, the day I started Sign language, so driving from college, straight to hospital, through busy busy Newcastle, was NOT something I was looking forward to. But it went fine, it just looks a lot scarier than it actually is. I was fine at that appointment and I'm pretty sure I'm still doing well now. I've had the odd crappy day which make me wonder if I'll really last until August 1st till I next have to be at clinic, but I'm so sick of that place, sick of IVs and drugs and weight bitches and everything, that I'd really rather not push it any further forward before I really need to. On another note, I applied to get my grubby little mitts on my hospital folders, as I'm weird and find them interesting, and I'd actually love to sit and read through the entire load of them, as theres so much I can't remember. I know it's hardly bedtime stories, but it's my past and I want to know what was said, especially back when I was a kid and was spoken about, rather than to. I saw a note in the front of my folder where my doctor had signed a piece of paper approving my request to see my notes, so YAY!

The bad luck thing I mentioned before... I'm not even kidding. I've had a pretty shit year since the second I turned 19, and that's no exaggeration. So many things just seem to go wrong. So I'm really hoping that when I turn 20, I can wave goodbye to all this shitty luck!

Hmm I didn't have much to say really! Just thought that after nearly a month of not blogging I should probably say something. Cos any longer and I was expecting thousands of people to flock at my house demanding to know if I'm still alive.


Oh and before I forget. I'm still meaning to sign up for this years zipslide. We've got to contact the woman over the phone, so naturally that means I have to delegate the task to someone else and erm... it's being procrastinated on just a shade. But once I'm signed up, I'll be making a justgiving once again and be pestering you all to sponsor me to stand on the edge of the baltic, not look down (hi fear of heights!!) but to zipslide along on a tiny piece of wire 200ft across the River Tyne.

Why do I do this to myself?!

Wednesday, 15 June 2011

Looking back.

A couple of weeks ago, Gemma posted about finding an old diary and reading back through it. This gave me the idea to get up off my bum and fetch my old diaries. Been a while since I've read them, and they're just sitting in a desk drawer.

Random fact: the one I write in now is the multi-coloured spotty one

I have only one thing to say:

I talked a lot of crap when I was a kid.

Seriously. I started writing them when I was 13. Before that, I'd always meant to get round to it but never actually did. There's the odd notebook full of scribbles and drawings, and the occasional page where I'd write something down if I felt the need (I found a page folded up in a box of random things writing about how much of a bitch my year 8 form teacher was about my hearing. And I didn't even swear!)

I don't know when I started to write about CF stuff. The things in the first few dairies which take me to from about 13 - 16 bearly mention it at all, just things like having to go for a clinic appointment, not being happy with being on IVs cos they usually clashed with something I wanted to do, etc. The one I write in now has a seriously fair amount of CF stuff in. Everything from how shite I feel, how clinic went, worries and stuff about CF, basically everything and anything, but I talk about CF so casually and so much, which I sort of hate now, especially looking back at older diaries cos it means how much things have changed and how much it's impacted things from my thoughts to things I can physically do.

There's also random stuff which I love reading. Like things that happened at school/parties/in the summer, that there is no way I'd remember without them (my main reason for actually starting a dairy was b/c of my terrible memory. And it's really true b/c I can't even remember half the stuff happening. Sometimes vague memories come back though). Friends/boyfriends/exes get mentioned a chunk which is hilarious to read back to. And then you read the name of the guy you used to like and you think how delusional you were. All I can do is laugh really. Cos it's a load of babble from years ago.

Maybe it was one too many hits to the head from footballs.

"My head and footballs seem to have a really close relationship these days which I'm not really enjoying..." (Quote from a page written was I was about 15)

(Might go through them properly and find a few more quotes, cos seriously, I am NOT kidding how random and weird I was/am)

Friday, 10 June 2011

Winning streak.

Are you ready??

Here it is...

Wait for it...



Okay here it goes...

I've now officially passed first year of college and I'm into 2nd year for September!!!!

I wasn't really worried about it as you have to fail 2 projects and have really shit attendance to fail the entire year, and I've passed every project and actually turned up to lectures and stuff. I'm still happy though, no one can snatch away my moment of glory. I thought it was going to be a shit week when I knocked over several drinks on Monday and spilt my cereal all over myself on Tuesday morning, but alas, it's gone pretty amazing! I don't usually get a winning streak like this so I'm making the most of it :D I'm going out for a BBQ party at a friend's house for their 21st on Saturday, and I'll celebrate a bit more then. The extra cool thing is that I can drive myself there and back, rather than have to wait around for lifts. Soooo happy :D I won't be able to drink, obviously, but I think I get hyper enough on sugar and redbull so I'm sure there'll be some awful tagged in photos as a result the next morning anyway. Oh facebook, you're the bane of our lives sometimes...

Plus, I've just realised I'm steadily ticking off more things from my list, and my resolutions I set myself this year. It wasn't a big whole 'I'm going to do this, and that in 2011', it was more just doodles on a piece of paper setting myself a couple of goals. So I've recently managed to tick off getting a car, passing my driving test, getting through year 1 of my course, starting a sign language course, seeing people more and being more social rather than a hermit, and so far I've carried on with the 365 project which I'm pleased about! I'm still uploading the photos now and again onto flickr, and also facebook if you're one of those lucky fucks I abuse on there... ;)

Tuesday, 7 June 2011

For a bit of added happiness...



Let's all skip and jump and run into things like freaks out of being deliriously happy that I did it on my 2nd attempt, with a total of 3 minors :D It's a massive load off my mind b/c it means I can drive myself to/from college for my signing course starting on Monday (The same day which I have a hospital appointment, therefore have to leave slightly early so I can drive to the hospital, by myself, for the first time ever. Yes, I'm terrified of that! My main worry is the ticket machines...)

Aaaaaaand I'm off :)

Monday, 6 June 2011

Put it into perspective.

Finally finished IVs after 3 weeks today! And last night, in the bar, a bloke heard me cough and said 'Well that's a bad cold you've got!'. I just replied 'I wish'. IVs will never get rid of my cough the way they used to when I was a little kid. But they do make it better - the whole reason for going on IVs was b/c of the cold I'd had, and the number it did to my chest. I had THE most disgusting cough, felt like general shite and wasn't getting any sleep for it. Neither was anyone else in the house (and neither were any neighbours who leave their windows open on a night). I've finished them feeling way better than I was. On and off side effects all 3 weeks were a bit disconcerting, as they usually last the first few days and then leave, never to darken my (very painful to walk into) door frame again. But now they're done, and gone, and I'm finally free once again :)

I've been out a couple of times, whilst on IVs (typical) but had a laugh nevertheless. IVs don't stop me. They never have. Unless it was a pool party... Don't think I've got the risk of that happening in the UK to be honest! There was some really nice days of gorgeous weather. I went for walks every day it was nice. Short walks. IVs aren't a miracle worker on me! But a walk enough for me to consider it physio, as walking always helps. On the days I went on walks, I'd always walk down to the river, and then walk up behind the boathouse where there was a bench. Every day I sat on that bench, was a butterfly. It just sat and fluttered. I'm not sure it was the same one every time, but it looked the same. The same pattern, same colour. Same ballsy fearless attitude not to fly away when I went near it. Call me crazy, but I had a huge Bree vibe from it. I have no idea why. So maybe it was her just letting me know she's okay. Cos it's something I've been massively worried about.

My sign language course has been postponed for a week. Not sure why but I don't see why it matters as I'm still doing the course, just one week later. I'm positive it's just 3 weeks (although the thought that I could actually learn a new language in 3 weeks is almost laughable if you're aware of the state of my memory) I heard the teacher saying something about 5 weeks, so now I'm confused! I'm looking forward to it. I'm curious about the other people who'll be there. It's bound to be a mixed bag due to the nature of the course and the timing of it.

And then everything is put into perspective.

A girl who went to the same high school as me died two weeks ago; she was killed when a tree crushed her car as she was driving along a narrow road during the strong winds (about 80mph) there was that day. She was 18. I didn't know her personally - she was two years younger than me, and was in year 11 when I was in upper 6th. But I probably walked past her, saw her around without realising. You see everyone in that school at some point, you just don't know their names. Her funeral was on Friday, and the Abbey in Hexham was packed with people who knew and loved her. From what I've heard, she really lived her life to the full. But regardless of knowing her or not, the accident has hit me quite hard. It's made me realise the fragility of life, and how easily it can be lost. Having CF, being surrounded by hospitals, and knowing other people with lung diseases, some who sadly pass away, you do get slightly used to death, as bad as it sounds. But a lot of the time (albeit not always) you have a warning. Having CF (or any life threatening illness) is a warning in itself. Sometimes they're slipping away, and you know, even if you try and deny it, that they're not going to be here forever. So an accident like this, has shook me to my core. I've always considered you'd have a warning, especially when it comes to CF. But sometimes you don't. And it makes me realise that I spend too much time doing nothing, when I could be doing something. I don't mean, trying to save the world every day. That would take more energy than I've got! I just mean, spending more time with the people you love, and making sure they know it. Making memories, so, god forbid anything happens to anyone, you know that you have something to remember with a smile.

Emma will always be remembered. And I'm just scared that one day, I won't be.

By the by, I don't mean to get all depressive on you all. These are just thoughts and stuff that's been on my brain, and I just needed to write them down :)

Saturday, 28 May 2011

Finally finished.

Year 1 at college is DONE!!


Right, if we're getting technical, I've still got one last tutorial - a 10 minute one on one talk with the tutor to find out the results of my last 2 submitted projects, and to find out if I'm into year 2. A lot of us aren't worried about this - one of the projects is part 2 of something, so if you passed part 1, then you've passed the whole thing as the two grades just get added together. Plus, you can still fail two projects and get into year 2 anyway. Most of us have passed everything so far, so it wouldn't even matter if we failed the final project (But yeah, that would kind of be a kick in the balls). I actually finished on 20th May as that was the final hand in date, but I have been, in fact, sitting around doing fuck all since.

That people, is what I do best.

Msn is so boring now. I used to talk to Bree a lot on there. And whilst we hadn't talked for a little while due to her eye sight going, it was different b/c I knew she was at least alive. And now shes gone I find myself looking for her name when I sign in. It's the lungy people who are usually on msn the most and you can usually find someone to talk to. But now I've noticed it's really quiet. It kinda sucks.

In other news, I managed to completely forget about a driving lesson, b/c I'm a total winner and misread the date - I thought that the lesson was on Friday at 1.30. But it was actually on Thursday. So I got a text whilst I was in nandos (Again. My god, people, that food is heaven) asking if I was okay, b/c I've never missed one before, so it was a bit out of character apparently. I'm still getting charged for the lesson I missed (booo) but she managed to fit me in for a lesson on Friday to work on maneuvers cos that's what I suck at most. And that's what she wanted to work on in Thursdays lesson - I don't practice maneuvers in my car when I'm out and about, and I just park shittily in any space I can find. I also use the hell out of my disabled badge just b/c I can, and b/c I sort of enjoy the annoyed look on the faces of the old jealous people. So, I'm not looking at missing Thursdays lesson as a fail b/c a, I went to nandos, b, I drove there, which is what I'd do for 3/4 of my lesson, in between chatting and being crap at parallel parking, and c, I got another lesson for Friday anyway.

Isn't my life fun?

I'm trying not to be a whiney bitch (aka, some of my recent posts in the past couple of months) but sometimes the only way out is to bitch and then you can just carry on with life, kicking small children in the face when they piss you off and so on. But the odd outburst is inevitable and you either feel better for it, or you feel all your good karma evaporate and it can only be solved with.. oh, this would do nicely:

Yes please :)

Wednesday, 25 May 2011

RIP Bree

Rest in peace doesn't seem right for Bree. She was always the loudest and brightest soul, so she'll definitely be the same no matter where she is now.

I know people are a bit confused by this, and I don't want to drag it out so I'll just keep it short.

In January, she contracted a neurological virus. It made her dizzy, and sick, and messed up her eye sight. Eventually, the dizziness started to fade but her eyesight got worse, to the point of being registered as legally blind. Then things just got worse from there. She was in and out of hospital a couple of times as they tried to figure out what was going on. And then suddenly out of the blue, I heard that she was in ICU and unresponsive. Next, was that she was on life support. A week ago, she was taken off life support but kept holding on. People got confused and thought that she'd passed away at this point; this wasn't true, but she was still unconcious and not really getting any better.

This morning, 25/5/11, she passed away. Bree was only 25, and had her lung transplant due to Bronchitectasis on 7th August 2009. She was doing amazingly, accomplishing loads with the new lease of life she'd wanted and needed so badly. I know she was a big believer in signs and spidey senses, and she was a cracker for decoding dreams (If I ever had a dream that made no sense, she'd be the first person I'd tell and everything would make sense again) so I'm sort of going to keep my eyes open for any little signs that let me now she's okay where she is. It's definitely the kind of thing she'd be looking for - I know she'd found signs from people once they'd pass and things would make sense, or have a dream about something that would actaully end up explaining something that hadn't even happened yet, but when it did, everything would fall in place.

She once told me, the reason why she never panics when she looses something, is b/c she'll have a dream which will help her find where she lost whatever it was. 

I'm talking shit. I can practically hear her going 'Smarten the fuck up!' which always helped knock some sense in me.

Basically, I'm going to miss her like crazy. She was the first friend I had who had a lung disease. We read each others blogs, talked on facebook and msn, and even tried to skype despite my fucked up hearing. I think what made us close was, it wasn't widely known but her hearing had been affected by the drugs too, just not as badly. I've got way too many memories of hilarious webcam chats on msn which kept me laughing for ages and we'd call them good physio. We shared an insane tea addiction, seriously, I've never been able to talk about tea and different types and so on for so long to any one person but her.

So Bree, this cup of tea is for you xxx

Ignorance is your new best friend.

I'm tired of being a voice that is never heard. No one believes a thing I say when it comes to the medical side. They're always the ones that are right. Fuck how I actually feel as long as they believe the bullshit they're spouting and my sats are good, what they say is basically gospel and MUST be right. Its so frustrating and has happened so many times its irritating. A massive example of this is the cipro argument:

I won't take it, I refuse to take it, b/c the last couple of times I took it (Last time was Jan last year) I felt like crap and finished the course not feeling any better, but almost worse, if anything. But I'd have my lung function tested and the numbers were good, a bit higher than they were just before starting it. So therefore it worked, regardless of how shit I feel. What everyone chooses to ignore, is that once the drug is out of my system, my LF will go back to what it started at, if not lower, and I'm still feeling just as lousy as ever. Everyone - Drs, nurses, my parents, will just refuse to listen to me and keep suggesting it. I can't even stress this enough. It's like saying 'Hey, why not try Tobra IV again and see if this time it wont fuck your hearing up a bit more'

When I think something's wrong, no one believes me b/c they refuse to believe the words of someone younger than them. It doesn't help that I look literally 15. So somewhere in the back of my head they're thinking 'she doesn't understand what shes talking about, so shes wrong'. I've self diagnosed (to myself) and been right when eventually other people have confirmed whats up with me in the past. Like Pleurisy, 2 years ago - I suggested that the pain I was in was pleurisy. I was told I was wrong, and sent home on IVs. Ended up in massive pain which resulted in me going up to the CF ward. After the dr fucked about with tests checking my gall bladder, he eventually said it was pleurisy. That's what I said a week ago. But I was ignored.

As always.

My parents side with the dr. If he chooses to ignore me once again and suggest cipro again, I get pissed off looks b/c I refuse it. Again. Despite the fact that I'm the patient and I know how I feel, where the pain is, what drugs do and don't work, whatever the dr says is right and I'm always wrong.

Y'know, I'm genuinley worried that one day I'll actually be ill. As in, really ill. And no one will step up the game. They'll be clueless as usual, or give me the drugs that I know don't work. Or they'll make a fucking idiotic response like the following over the last few years (and believe me, there's more, but I can't remember any others as A, my memory is shit, and B, I'm tired)

Me: 'I feel like I can't breathe'
Dr: 'That's b/c you have CF'

Me: (On being told that one sugar level is the tiniest bit high) I don't want diabetes
Dr: 'But you can get free prescriptions'

-Dr walks in-
Me: 'I feel like crap, I have no energy, I've been having hemos, my weights gone down, my sats are 92% and my Lf just dropped 25%'
Dr: 'Lets hope the IVs work then -walks out-' (that's literally all he said)

Upon phoning the dr to say how crappy I was feeling back in the day when I tried out mero, and the fact that I felt like I had the flu and slept almost 2 days (and I never do that) he replied 'That's the IVs at work. You'll be fine' (Fast forward at clinic about 4 weeks later and I'm back on IVs, WAY sooner than I ever used to be, and waving goodbye to my old 'IVs every 3 month' routine b/c I start needing them every 4-8 weeks)

(when I was in hospital in March)
Me: 'So what's wrong with me? Why am I in so much pain?'
Dr: 'I don't have a clue' (and this was WITH all the fucking test results over the last day right in front of him!!)

Knob end. 

P.s. There are other good drs in the hospital. I'm trying to switch. But whenever I try I get told that this dr is 'a good dr', despite the fact that I'm so sick and tired of the bullshit way he considers as treating me. One day, I'm going to make someone fucking listen to me.

Sunday, 22 May 2011

Yet more driving adventures

Taking inspiration from Clarey and her blog post on car adventures, I've decided to make my own. And now I'm slightly worried considering the fact that I've only had my car almost a month now...

1) I've parked so close to another car that my passenger had to climb out of the drivers side as there wasn't enough room to open the door. In fairness I was parked fine in my bay, it was the person next to me who was parked basically on/over the lines...

2) Parking in a suitable not-too-far and not-too-close distance from the petrol pump to not look like, for lack of better words, a knob, is really difficult

3) Failing so badly on a parallel parking attempt that the front of my car was right up against the front of the car infront of me (so, number plate to number plate) I'd gone slow so there was no scratches or marks but GOD that was embarrassing. Especially the people who decided to stop and laugh.

4) Ticket machines. I've only had to try this once so far, at the hospital, but I parked so far away I was literally leaning (head, shoulders, entire torso) out of my window to reach the button, then had to scramble back in to make sure I got through the barrier

5) It's worth remembering that it helps to take off the handbrake when you want to move

6) I fail on so many levels at opening my petrol cap. It's got to be unlocked turning it one way, and then you turn it the other way, and I can never remember which way is the right way

7) I'm not the best parker... basically I'm still in the lines, just a little bit wonky

Bare in mind I haven't passed my test yet. So there's still hope for me yet...

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...