Showing posts from 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…

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, providin…

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 …

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 leas…

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.

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 ti…

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&…

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 rock…

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 g…