I recently asked on my FB page what the worst thing about chronic illness was. I got a lot of answers, with a lot of similar themes and a lot I identified with. I thought I might write today about one of those themes, and the one that effects me quite badly.
Making plans. And then having to cancel them.
The thing with chronic illness is that it’s highly variable. It ebbs and flows. One day you can be kinda ok and actually do a few things. Other days it’s the opposite. And the exact timing of this is so unpredictable.
Last Monday I was supposed to go to a talk. I was really looking forward to it. But instead I woke up with a migraine. That just got worse and worse throughout the day. So I stayed home.
Today I made plans to go to the cinema with my husband. Something I rarely do anymore. I felt pretty much ok all day. And then, one hour before we were supposed to head out, I started feeling really dizzy. And my peripheral neuropathy started acting up in my legs, causing intense pain and burning all the way to my knees. Probably set off by the ten minutes of hoovering I did earlier. Or maybe it would have happened anyway and I need to stop feeling like I caused it in some way.
At the end of March I’m giving a talk at a conference. I’m really looking forward to it. Although I haven’t written it out yet, I pretty much know what I’m going to say. And although I’ve never presented at a conference before, I’m not too worried about that part. What I am worried about, though, is if I get a flare up of my chronic illness symptoms on the day.
I can take certain mitigating steps to lessen the damage. I can try and have as comfortable a journey as I can the day before. I can go to bed early the night before (though that might be difficult due to excitement plus children who don’t sleep well away from home plus wanting to stay up and chat to friends I don’t see often.) I can take painkillers in the morning. I can make sure I’m well hydrated. I only have to talk coherently for 30 minutes and I can go hang out in the Silent Room afterwards. And I am sure the adrenaline will kick in during those 30 minutes anyway.
But still there’s the fear that the pain will be too bad to go ahead with my plans. That, with the best will in the world, I may need to duck out. Tiny chance of that but there’s still a chance.
That, for me, is the worst part of having a chronic illness. Shit happens. And though I’m getting better at accepting that, it would be so nice to make a plan and then not worry about it.
There’s a Muslim phrase that’s used a lot by my relatives and friends in Turkey. Inshallah. God willing. It kinda means that “it’s likely that something will happen but don’t get mad if it doesn’t”. I’m not religious but these days I silently add it to the end of any plans I make. Because there really are no guarantees in life.
To sum up: Shit happens. And when you’re chronically ill, shit happens chronically. And I’m getting more ok with that.