Friday, 8 September 2017

Living with Chronic illness - The 'I'm going to get better' days

Today I am having an 'I'm going to get better day'. It's been over seven years since my fibromyalgia diagnosis, since I realised I wasn't going to have everything from life that I hoped, I am a long way down the path of learning to cope, but I don't believe it's a path that'll ever end and that's fine.

Since that first diagnosis my fibromyalgia has become a lot worse, I've developed any number of new conditions (more on that soon as there's been some progress with working out what) and life has become harder than it was when I was diagnosed. And, of course, so has coping. 

There's a lot of ways to cope with a diagnosis of something chronic and a lot, for me, revolves around acceptance, about understanding your new limitations and learning to look forward to the new things your life has to offer. But some days you seem to forget that acceptance (and I know I'm not alone in this). Some days you decide you're going to get better one day and you think about how your life will be when you do.


It's silly, really, there's no cure for Fibro and as much as I hope there will be one day I don't pin much hope on it being in my lifetime. Add on to that fact that I now have a number of other conditions that, equally, have no cure... It's silly to imagine life where I get better. 

But actually I feel like it's another way to cope. It's day dreaming, it's like when I look at houses on rightmove that I'll buy if we win the lotto. I know I'm not likely to win, but my gosh I get a nice warm fuzzy feeling when I spend some time thinking about it. And that's the same as my 'I'm going to get better' days. 

Tomorrow I'll let logic back in, tomorrow I'll focus on appointments and coping strategies, on questions to ask at appointments and the impatience I feel when letters take forever to get here. But today... 

Well today I picture getting better soon so that I can take my kids to the park and run around, I picture taking them to soft play and getting in there with them rather than letting someone else. Today I will imagine Ethan's face if I could pick him up from school and the laughter from Oliver whilst I roll around on the floor with him as I wish I could.

It makes me sad that those things are dreams to me, but it also gives me something to hope for. When you have chronic illness it's very easy to lose hope, but these day dream days give us hope, they remind us why we can't give up. 

So no, I'm not going to get better, but I'm going to enjoy pretending I will. And I'm going to keep trying to find ways to do other things to make my children happy in lieu of the things I can't do, because believe me, they're there. And I will keep on looking for ways to improve, even if I can't expect to get 100% better, even 10% would be nice.

Coping is about accepting, pacing, learning your limits but it's, also, about not losing hope. Hope needs to be realistic but it also needs to be something that keeps you going. It doesn't have to be children, it can be anything from the biggest life events to just that tiny thing that you want to achieve. But it's that thing that keeps you moving forward rather than stopping you, making you stand still. 

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