You know I like to be honest here, and I like to raise awareness of how chronic illness affects our lives as well as our bodies.
Chronic illness comes with many symptoms. But with those symptoms also come things like loneliness, low self esteem, loss of sense of self, and fear. I want to talk about the fear for a minute.
I’ve been flaring the last few days, and even though the increased symptoms are obviously rubbish, the thing that’s got me the most is that it’s scared me.
I’ve tried not to think about it too much, and have managed to keep it to a mild low level - I know worrying isn’t going to help and in fact might make it worse. But it’s still there. I’m only human after all.
This is what happens when you live with a chronic condition. It’s always looming in the corner somewhere. Maybe this is what being haunted feels like.
The last few days have made me realise that my symptoms haven’t felt like this in ages, which is a good thing obviously. But with that realisation, I desperately missed how I felt just a few days ago and I wanted it back.
Living with an illness like ME means that a flare could conceivably last days, weeks, months or years. Any one of those options is realistic, I’m not being dramatic here.
Maybe the last few months have been a nice blip, they weren’t my ‘new normal’ and now I’m back to where I was again.
Or maybe I’m just a bit run down and it’ll go away literally tomorrow.
The thing is, I don’t know for sure. And that’s a heavy weight to carry. To some extent I’m going to carry it forever.
Do you know what it’s like to live with that?
If you know someone in my situation, please don’t tell them not to worry. I’m not worrying just to be dramatic or negative. It’s scary, this thing. It’s scary to feel like your chronic illness has more control over your life than you do.
Anyone would worry about that sometimes, surely?
It doesn’t mean everything is awful. There’s still joy and laughter, there’s just a bit of fear in there too.
That’s allowed I reckon.