Monday, 30 March 2009


You may not want to know this. You might decide to stop reading the second you realise how vulnerable I feel this post is making me. But for those you feel the need to be warned, this post is, in the simplest way, raw CF. The torture you go through, mentally and physically can build up to the point of either just wanting to scream or burst into tears, both of which I've probably done at some point. I wouldn't blame you for preferring the more sweetness-and-light type posts, but my life is basically a roller coaster, a yo-yo, or whatever people mention in cheesy analogies like that, and you've got to go down before you can get back up.

I never actually wanted to write a post on this, but it's been running through my head so much, that this is the only outlet I have. I don't like scaring people with my CF. The friends that I have that get worried about me, because they've allowed me to tell them the truth of what will inevitably happen, will ask how I'm doing. I'll usually just say I'm fine, laughing off their shocked looks at my coughing fits and saying that I'm always coughing, so there's no need to look terrified. But when I'm ill, and I'm talking 'seeing a flight of stairs as Mount Everest' ill, there's only one person who I've told the truth too, and to see the fear in her eyes at what I had admitted, was more than I could take.

Last May, I got more ill than I've ever been. With PFTs in the 50's -which is low for me, but I'm totally aware that some CFers would give their right arms to be back up at 50%. Bear in mind that a perfectly healthy person will usually have PFTs above 100%- major lack of energy, and constant coughing that left me gasping for breath, I knew that I was ill, that I needed IVs, and that I couldn't get back to my usual health just by hoping that whatever it was would go away. I think the reason why I got that ill was because, like this time, I got a cold during my most recent IVs, and rather than spend a few weeks enjoying the lack of spontaneous coughing fits, I carried on like that. Instead of having a break in what is inevitably a downhill struggle, I carried on downwards, with no choice. I can remember doing that lung function test at clinic, and breaking down because it hurt to try and exert so much force behind just one breath. I couldn't complete all three attempts, and the nurse understood and let me go back to the waiting room.

Since having a cold during these IVs, and having spent the last few nights coughing, possibly even more than I was before the IVs started, I'm going to admit that I am scared shitless that its going to happen again. Last time I hated the fact that I could barely walk up the stairs at home, yet alone the gargantuan amount there is at school. I don't want to have to go through it again, even though I now know that if I get ill, I'm obliged to be admitted straight into hospital. I know I'd probably leave hospital healthier than I have in a while. (When you're ill and exhausted, do you know how hard it is to do physio? But at hospital, you have no choice and are bullied out of bed by the physiotherapist, which isn’t even something you're exempt from when coming round from anaesthesia). I just don't want to have to go through the torture of struggling to breathe before someone helps.

It’s not only the physical aspects I'm scared of. And it's not particularly my own anguish I'm scared of either. (Even though as much as I can say I've tried to accept what CF will throw at me, I'll always get scared when it becomes reality. And getting this ill is a small taster of what life will be like later on.) What I'm scared of is admitting to people I'm ill. There's only so much you can hide, but when you have to take a major time out just to get your breath back, and someone asks what's wrong, sometimes it’s too hard to hide the truth. You tell them the problem, and even though their expression scares you more than anything else, it does help to somehow loosen the weight of keeping it all to yourself, even if it doesn't physically make you any better. It's just hard being able to tell someone without feeling guilty about scaring them, even if they basically ask you too. I never like to worry someone, and if I can, I'd rather hide the truth than tell it. But when CF takes away your strength, you find out how much effort goes behind the simple phrase ‘I’m fine’.

If you add this crap onto the fact that my lungs are still acting like a rattle, it feels like it’s just a matter of time, and it'll be sooner that the usual three month break between IVs that I'm trying to keep up to. If anything, I was hoping to get better long enough to try and extend it to 4 months - my Doc wants to avoid too many IVs, to prevent any 'future problems' one of them being the loosing the little hearing I have left. It’s almost like being in the middle of some stupid waiting game, where you'd do anything to stop the time, because you’re just too scared of what may happen when the time is up.

Tell me I'm over reacting, that I'll be fine, that maybe it's just the cold hanging on and I'll get better. But deep down, maybe really deep down, you know your lungs are worn out and need a break. All I keep hoping is that it doesn't screw up the 6th formers ball. I have the most gorgeous dress to wear and it may be the last time I see some of my friends before they go shooting off to different areas in the country for Uni, whilst I stay here, but I'll find it hard to enjoy if I can't spend more than 5 minutes on the dance floor, or worse, I really do get ill and end up stuck in hospital. Sometimes, my lungs have really sucky timing.

I don't want every one's impression of me to be 'that girl who sits moping in the corner'. I don't try and be all depressing, but the things that CF throws at you sometimes leaves you with no choice but to think about it, and too many thoughts running round your head that someone else my age doesn’t seem to understand – whilst I have tried my hardest to explain to friends why I’m so upset sometimes, or just downright scared, all they can think of is that I’m worrying over something that, in their opinion, is pointless. Someone actually told me to just shut up, that they don’t spend ages sitting, thinking about how they could get hit by a bus tomorrow (Although I think there’s a massive fucking difference between a disease with no cure and an unpleasant looking life expectancy, and forgetting to look both ways when you’re on the pavement, thanks very much.)

All these things aside, I know one thing: I will get better. I HAVE to. Because if I just give up now, who knows how I'll cope when things get harder. People always tell me I'm brave for going through all the CF stuff that I have no choice to. Maybe now is my chance to prove it, if not for others, then for myself.

Friday, 27 March 2009

Time is an overrated thing.

I can officially say that I take being blonde to new heights. On Tuesday, I walked into a door. A door that was locked, which wasn't my fault, but I had put my hand out to push the door open, and instead of realising that the door was locked and that I wasn't going anywhere in a hurry, I kept on walking and now have a lovely purple thing in the middle of my forehead. Ouch. To add insult to injury, it was in front of a bunch of twittering yr 10s were waiting by their classroom, next to the door, and probably fell about laughing the second I managed to get through the other door. (It was double doors. Just my luck that I chose the locked door first.)

I know I complained (what a shock) about the fact that I got a cold just as my IVs were finishing, and guessed that it wouldn't end well for my coughing-state. (And I was right.) But the thing is, IVs seem to fly by, but at the same time, seem to take forever. Two weeks is probably a preferable time of IVs for any CFer, providing the IVs work, and for me, they usually do. I can remember when I used to have IV lines in my arm or wrist. (We called them 'long-lines', which is a suitable name to explain them on the kids ward.) And the IVs would seem to take months, although this was down to the fact that those things were down right uncomfortable. The only way I can closely describe having a 'long-line' shoved up your vein, is to imagine a pipe-cleaner. (Those fluffy-ish, yet bendy things you'd love to play with in reception or nursery.) That is basically what it felt like, although maybe my veins were packing up there and then, as this was definitely the sensation I felt for my last two or three hand/arm IV sessions when I was 11. The feeling that something fuzzy, that didn't belong there, was slowly moving up my arm or wrist, was fairly disgusting. I'd go as far to say you could imagine a tape-worm wandering about under your skin. (Don't blame me for your choking on your food, you shouldn't be eating and reading this stuff in the first place).

Although now I think about it, that was a fairly graphic paragraph. You wouldn't think all that when you see someone with a drip hanging from their arm, would you.

Theres a lot of things that seem to take forever when you have CF. You'd think spending half your life in hospitals or waiting rooms would make you more tolerant. Well, maybe for some, but not for me. In fact, I'm likely to be the first in line to complain when I'm waiting for something. More than once, in various hospital waiting rooms (especially at the hospital I go to for my hearing) I'll often say 'But that's not fair, I was here first!' when someone gets called by the grumpy looking nurse in the waiting room. And it is true, I was there first. Its not my fault that my Doctor seems to be a bit picky on who she sees some days.

Ohh, something you have to check out, Meghann's blog, Queen of the O2 people, has a hilarious list, 10 ways to know you're on the lung transplant list. I'm not on the list myself, but somethings I already do from that list, like the blowing smoke rings with my nebuliser!

My next clinic app is about a week and a half away. I'm quite apprehensive about it to be honest. Theres that whole thing with the two Doctors thinking I didn't want IVs when the whole talking to actually turned out to be pointless, and the fact that whilst those Doctors are great, and probably get on with every other patient that isn't me, I just want to go back to the Doctor that I usually see. The past two appointments were with Missy Doc, but before that, I always saw my usual Doc (Who looks suspiciously like Ken Lerner). It's different being in adults compared to paeds. He's the only consultant I've had that talks to me, who makes sure that my next appointment or IVs are not bang slap in the middle of an important date (like exams, not something like a party :P) and he actually listened when I suggested getting off Tobra for a bit, and changing to something else (Thus resulting in the whole Colostin doo-dah, but either way, that antibiotic worked).

The point is, I want a doctor who will talk to me, regardless of the fact that I'm deaf. I honestly appreciate anyone's attempt when they talk to me rather than getting someone else to tell me something.

Tuesday, 24 March 2009

Everything and anything.

My school apparently had some form of a protest last Thursday, where a large group of yr 10 and 11's refused to go back to their lessons just because the new head teacher wanted them to follow the uniform more closely (basically, less Ugg boots and more wearing the school jumpers). This is ridiculous, mainly on the part of the yr 11s, as they'll be in 6th form in a few months, therefore, never having to wear the sodding uniform again. I don't really think of what they did as a 'protest' (even if that's what The Journal called it), I prefer to think of it as a group 'hissy fit'. I wasn't involved in this in anyway, me being the boring sod I am, and also in 6th form, just went along with doing my Art work, blissfully unaware. The ironic thing is that my sister heard about the whole protest thing before me, and sent me a text to make sure I was Ok. Obviously, with her being on the opposite side of Hexham, things got a little exaggerated. She said that she'd heard there was a riot at school. I replied saying that I had no idea about it, seeing as I'd spent the last three hours in Art, and obviously the talk hadn't yet reached me.

So, the passing for a 14 year old thing. Hmm. Well, about two weeks ago, when I had 'flu-like symptoms' from my IVs, I had to leave school early, as I felt, for lack of better words, like shit. Whilst sitting in the school office waiting for my Dad to pick me up, the secretary hands me the 'sign out' book for those who leave school early. Open on the 'yr 10' page. I said that I'm in yr 13. She looks disbelieving (Er, the fact that I was wearing jeans and not a uniform may have been a hint though) for a second then says she'll call the sixth form office, and I'm left to my hazy, headachy self for the next 30 minutes. I'll probably grow to love the whole looking younger than I am thing, although until I've actually got some ID, or I can be mistaken for an age I wont mind (think 27 year old mistaken for a 21 year old. I can live with that) I've got every right to get pissy.

Righto, onto my weight -joy(!)- is more erratic than a yo-yo in the 90's. When I had my PEG, but wasn't using it, I managed to gain enough weight to keep everyone happy and have the godforsaken thing taken out. Since then, my weight has dropped, and I can officially say I'm about the same weight I was last year. Not so great when I'm considered to be a growing lass (Haha, growing. I found some 6ft jeans in my wardrobe yesterday and when I showed my Dad, he said I could grow in to them. I laughed so much as I don't think I'm getting any taller, dammit.) Anyway, I digress. I need to get my weight back up. The first time it dropped since having my PEG out was cause of Cipro, and the fact that not only did it not really have much of a positive effect, it buggered off with my appetite at the most inconvenient time. That and the fact that I just can't be arsed to get up and eat more crumpets. Laziness is a main thing in my life at the moment. Or maybe its just lack of energy :S. I obviously need to pack in as much weight as possible, but unfortunately, my appetite hasn't really returned. That and the fact that the 'flu-like symptom' episode left me eating very little for the next 42 hours.

The only thing left to say is that my IVs finished on Monday, and had minimal effect thanks to the cold that my little sister passed on to me. Thanks sis. I'm still coughing, a fairly unproductive cough that leaves your head feeling that its been attacked with a meat cleaver and your throat red raw. Drinking tea and hot blackcurrant hasn't helped the way it used to. Whoever has a cold cure, I call dibs on first go.

Thursday, 19 March 2009

Cough drop, anyone?

I would never say that I have an eventful or exciting life. My current dilemma is a mixture of trying to find a nice background for my laptop, that I actually like (for more on my inability to make decisions, read any random post) a sore neck and coughing. Yeah the coughing one is probably the most irritating, and I'm finding it unbelievable that I'm still having those random, headache-causing, weird-look-getting, gut wrenching coughs even though I'm a few days off finishing my current IVs (hold the fireworks, ta). I know my coughing annoys everyone else. It makes random people peer at me when I'm sitting in the school library with my friends, it makes old dears on the bus or in the local shopping centre offer me a sweet (thinking it'll help, bless them) and it is sometimes even enough, at the hospital, for people to give me a strange look, as if an ill person in a hospital is absolutely barbaric (when they're the ones having a smoke outside the gates).

At least twice, recently, an old woman has commented on my cough. I'm usually on the bus or at the shopping centre when this happens, and they're staring at me like I'm a circus freak, with a smile as they tell me that I have a bad cough, don't I?! Thank you, captain obvious.

Hopefully I'll get rid of this sore-throat-from-coughing feeling soon, although if you even think physio, my lungs (the piss takers they are) hear you and start this uncontrollable urge to hack up everything they've got.

On Cf2chat, someone pointed out that a site promoting a vegan lifestyle had some mis-information about how children who are fed dairy or formula milk are at risk of having CF. After laughing at the stupidness of whoever the hell wrote that 101 reasons to be a vegan list, I was annoyed at the ignorance. So after several CFers sending messages 'to the author' they changed it. So now it says that if you have a vegan lifestyle (and presumably have CF) you will have fewer CF symptoms. This is still wrong, as a CFer who is a vegan isn't likely to be that healthy due to the fact that we need the protein and stuff that you get in milk, meat, and whatever else is considered wrong for a vegan to eat. As for number 48 on that list, I can't ever say that the 'unmasked, robust flavour of pizza sauce' has ever bothered me, and I can assure you, I definitely have eaten diary products as a kid. So, fancy a laugh, read this As for number 33, I can't say whether or not I've noticed if a vegan kid picks his nose less than a dairy fed kid.

Monday, 16 March 2009

Ivs of a gargatuan size.

Because if I'm gonna whine about it all the time, you may as well have a picture to go with it, right? And a bad photo of me. Well, I reckon you've got the gist of it now. This is the bugger that I'm attached to for about 3 hours each day (two doses about 1 1/2 hours each) and it gets on my nerves.

The old ones were half the size of this. I miss them. Even if I did gripe about them ones too. The picture shows the bubble about when it was just getting started. Ahead lies another 90 minutes or so of 'fun'. Haha.

Ah well, this wasn't meant to be a big post, just a picture of the 'thing that irritates me most in the world'. I've been wondering if I should post a picture of my port needle in action, although there's a white plastic cover over it so you don't see much, and no one likes to pull off that stuff unnecessarily.

Saturday, 14 March 2009

IV's or not to be's?

Urrrgh. So what kind of crappy bullshit is this - you get 'flu-like symptoms' when your IVs work. Now that doesn't sound right to me to be honest. I started IVs on Monday and on Tues started to feel, for lack of better word, flu-ey. Its Friday and I still feel like shit, yesterday my Dad called the Doc and he said that sometimes when IVs are actually working, you can end up with flu like symptoms, which to me sounds like a load of crap as IVs have worked on me plenty of times, and the last time I had a cold in the middle of IVs, they ended up useless. So, I'm left feeling like crap with nothing to do about it. I keep alternating between too hot and too cold, with a headache that feels like someone bashed my head in with a hammer, and a sore throat. I don't know how long it'll last for, but I'll tell you now, it ain't fun.

Oh, something else that may be considered between funny and taking the piss- the intermate bottles that I got my Meropenem in this time (Oh yeah I do love to show off with my medical volcab) were twice the size. Its hard to describe the original ones, they're kind of grenade shaped with a clear plastic case around it, but this one is ridiculous. The smaller ones would take about 30-60 minutes to go through, these ones take an hour and a half, which is really annoying. And stupid.

As I said, I started this post on Friday and now its Saturday, and I suppose the feeling crap stuff has worn off - everyday since Tuesday I was getting hit my a mammoth headache around mid-day and now its almost 3pm, and no bass drums in my head, so hopefully its worn off. Although now I've admitted it its bound to come raring back with a vengeance. My throat and tongue hurt too - it feels like I've had my mouth scraped by sandpaper. Everything I eat doesn't taste right and scratches my tongue more. Although the fact that I'm eating is a good thing. When I first felt like hell on Tuesday, I had to leave school early. When I got home, I went straight to bed and slept for about 18 hours, so obviously didn't eat, and when I did eat on Wednesday, it was fairly difficult. Can't wait for my next weigh-in at the clinic and get a bollocking for not eating enough when I've just had my PEG out. (I showed one of my friends my new weird hole in my stomach and she was running about saying I have two belly buttons. I'm a mutant. Well, even more so)
Speaking of my new PEG hole/soon to be scar, I've been showing a few friends, then laughing at their responses. Its funny how many people think its cool, and the equal amount of people who freak out. However, I've learnt that maybe your new hole in your stomach isn't the best conversation starter. Well, not at any chance I've had anyway.

Sunday, 8 March 2009

Photographer in the making.

..At least I hope!!

So, I had a college interview to 'discuss my options'. Didn't go exactly to plan but it didn't go too horrendous either. It turns out that as I don't yet have any proper experience or qualifications to the course -which means that I would end up thoroughly confused (apparently)- I'm starting a Saturday course, which will take a year. Actually two courses. One starts in Sept and is 12 weeks, and the other starts in January and is 25 weeks, which would, using the course leader's words 'take a major step forward into doing the actual photography course rather than taking a step sideways and doing a different fine art course instead' (like the art teachers in school were pushing on me). Fine art is what I've been doing in 6th form, as there are no specific photography courses in the school any more, which means that it's not actually my fault I don't have the qualifications. So, after a year of these Saturday courses, I'll be able to re-apply for the original photography course and then they'll basically find it pretty difficult to say no to me if I've got a year worth of courses under my belt.

As for the questions, obviously I haven't left many stones unturned and only Piper asked me one, so specially for Piper, I'll answer her question:

Piper: at what age did you develop hearing problems b/c of the drugs? Was it after a particular dose/IV session, or was it more gradual?

My hearing apparently started going down around 9, even though I'd only been on IVs regularly for 2 years (having started proper IVs at 7 and usually getting a two week course every 3 months or so) so for all we know, my hearing started to decrease very gradually from the word go on IVs. It was apparently Tobromycin that did it, even though the Docs would refuse to acknowledge this - they hadn't mentioned a side effect of possible hearing loss seeing as 'it is so rare'. Its been very gradual and hopefully its stopped going down any further, but in total I've probably lost about 80% of my hearing, but that’s just an estimate. My (much better) Doc reckons its because I have some sort of extra mutation, which in a normal person would be harmless, as they wouldn't need Tobramycin. I've probably rambled a lot there but there's hopefully an answer in the middle.

Thursday, 5 March 2009

Confessions of a cystic.

On Wednesday I had my check up, there was this whole thing with IVs. I said I think I need some IVs soon, as in the next week or so, as I'm coughing, Cipro did nothing except bugger off with my appetite, and the only way I'll get back to 'normal' (whatever that is) is with IVs. So, my Doc thinks its an idea to keep away from the tobramycin, which I haven't had (except in nebs) for my last two doses of IVs, when I had Colisitin instead (Aka, the funny drunk legs moment).

The Doc wants to put me on this new antibiotic. I've never had it before so I'm wary, as the drunk legs thing wasn't as fun as you'd think. There were some unpleasant headaches and weird pins and needles feelings in my tongue that I hated and don't wish to repeat for a new antibiotic. However, I'm keen for this new medicine as when I first started Colisitin, despite the side effects (which get less and less each time I have it as I'm more used to it now) it worked at rocket speed, and I was feeling great within a few days. So if that happens with this new stuff, well go for it. But the Doc was um-ing and ah-ing over it as she had to make sure it was OK and that the stuff wouldn't bugger off with more of my hearing (hence why these new medicines are instead of Tobi, they're hoping the lack of Tobi through IVs will at least let me cling onto the hearing I have left). She comes back and says that this medicine will be in the stupid little bottles, 3 times a day (and a hefty dose too) I wasn't happy, as I'm used to twice a day, and three times a day just gets on my nerves. Plus, three of them stupid little, take-forever bottles a day would be a nightmare. I said twice a day (which would also involve lowering the dose but I didn't know that bit) besides, maybe a lower dose would be good, as when they upped the dose of ceftazadime (according to my Mum) my nose started gushing several times over those two weeks. This could have been another side effect form Colistin, but my Mum is firmly believing that its the Ceftaz (her being a nurse and all). So, the Doc goes to get this other Doc (who possibly has a slight God complex) who reads me the riot act on why I need IVs.

Obviously either he wasn't listening or the (first) Doc didn't tell him properly, but he thought I was saying no to IVs full stop. And me being deaf, I sit through his whole lecture unaware of half of what he said, as he has a whole beard/moustache palaver going on, which if you didn't know, isn't the best thing to help a deaf person know what you're saying. Half way through the lecture-that-could, someone, maybe either my Dad or the Doc, tells him that it was just the three bottle things a day I was pissed off about. He quickly shuts up and then starts asking what I'm doing at college/school. He's a nice guy and all, and offered to help with the whole college thing -  some confusion over college possibly thinking I can't cope on the course b/c I'm 'disabled' therefore they refused me. Although knowing me I heard wrong, so I don't know.

After I found out that the Doc was reading me the riot act on having to look after myself and needing IVs and such was important, bla bla bla, I found it hilarious, as it was my idea in the first place to say I need IVs. Anyhow, I'll go back to the hospital to get IVs started on Monday, and I'll try to be nice, seeing as another pointless lecture (which he only gave me cuz I can be a complete teenager sometimes) is not what I'm looking for right now.

Oh, the questions thing, I'll answer them in my next post. *Hints for more questions* there must be something you wanna know!!

Tuesday, 3 March 2009

IVs and Q&As.

I'm coughing so much right now its doing my head in beyond explanation. I keep having these random coughing fits that last several minutes.And they usually result in headaches, so... ow.

I'm half hoping that the Doc sentences me to IVs when I go to the clinic on Wed, as I can't take more coughing. I usually have two different antibiotics in my IVs, one or both is usually in a push syringe and the other, if it isn't in a syringe, is in one of those bottle things. The thing is called an 'intermate' or something to that effect, although I don't think I've ever given it a name. I just call it IVs. If you know the bottles I'm on about, they have a really long but thin tube from the bottle to where it connects to the IVs and I always swing it about. And hit myself, usually in the head or back of the knees, but its still fun. I tried finding a picture but I can't think of the proper name. Damn. Anyhow, back onto my story. Last time I was on IVs, they gave both of my antibiotics in the bottles, and as these things are automatic, and go through themselves with no way to speed them up or slow them down, it took around three hours for the two bottles to go through. So this time I'm gonna ask if I can have both in syringes. Partly as my friend is having an 18th, and I'm um-ing and ah-ing on whether I should go, as parties and IVs don't make the best of friends, but if my IVs were all in syringes, I could disappear for 5 minutes, do my IVs and reappear. If its in one of the bloody bottles, I'm not hanging onto that thing for an hour, at a party. Half my friends know about my CF, but most of them have never seen my IVs in action.

Now, because Cindy has just done a Q+A on her blog, and said it would be cool if other CFers did it, I'm telling everyone its fine and dandy to ask any question you like, and I'll answer them in my next post. If you don't fancy writing the question in the comments, just email me (my email is in the right side bar). Have fun.

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...