On learning about my CF, an ex boyfriend of mine very kindly (and with only a small hint of panic in his voice) once asked how he’d know if I needed ‘help’. Would I suddenly clutch my chest and start gesturing frantically for him to call 999? Would I turn blue in the face and just keel over without warning?
While most of those things could happen in someone seriously ill with CF, I’m not, and it’s unlikely I’ll be playing an extra in Casualty anytime soon. Although they should definitely use me…I play dead very convincingly when I don’t want to get up in the morning.
The dramatic stuff is what most of us expect when we hear about a chronic illness but that isn’t the reality for lots of people, myself included. Frankly, it’s all a bit more mundane than that. Boring yet constant. I’ve recently started doing some project management at work and I won’t lie, profound organisation skills were not gifted to me at birth. I’m much better than I used to be and it’s a damn useful skill to have but it’s definitely a learning curve.
It’s pretty much the same story with CF. Sure there are times when I can get away with doing little besides the daily pills. I don’t bother with physiotherapy because I’m exercising, I don’t do nebuliser treatments (a device by which you inhale antibiotics or other drugs such as ventolin for a few minutes at a time-like a complicated inhaler) because I don’t think I need to. I go for months like that and then suddenly realise I’ve got a metaphorical in-tray to rival Alan Sugar.
In all honesty I think that’s what happened with the little A&E trip in November (a hiccup in my otherwise very suburban CF life). I hadn’t been doing my admin and it came back to bite me. Now, in just the same way as can happen at work, I have to do twice as much as before so that I can get back to normal. I’m doing three different drugs with a nebuliser twice a day, (ok mostly once, nobody’s a saint alright) daily physio sessions and I’ve increased my pills to 30 a day.
I still haven’t got back to my baseline. I’m easily breathless and getting frequent chest pain and to be honest it’s starting to get me down.
Still, it’s the new year, the holiday is over and I think it’s time to get on with it. The next part is to step up my exercise regime which took a beating when I started my new job in October. That’s no easy feat when, on his daily walk, the family’s 16 year old dog overtakes me on the steep bits!
Now if only there was a pill that made you organised…