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.
So today was World mental health day. It seems a shame that so many people only feel able to speak out about mental health on one day of the...
Hemos. Nearly everyone with CF has probably been there at some point. Its just one of those 'things' that comes hand in hand with sh...
This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences...
I find it annoying I only ever blog when something like an admission happens, and even more annoyingly, thats why I'm blogging this ti...