Last Saturday I had a nightmare in which I dreamt that my body was rigid and my skin was burning. I woke with a start, unable to move because of a ‘ticcing fit’, with a strange prickling sensation all over my body. This isn’t the first time fits and dreams have got muddled together in a strange way.
Sophie, my overnight support worker, came to help me, and the fit didn’t last long. But while most of my body came back online I was soon aware that my hands were stiffer and even less cooperative than usual.
Almost two years ago, on a quiet Boxing Day morning, my hands suddenly began to spasm. My consultant later explained that sometimes muscles learn abnormal patterns of movement that become ingrained in the system and occur without the person’s control, and that this was a type of dystonia.
Botox injections helped and I was told to use my hands as normally as possible and avoid paying them undue attention. This is exactly what I’ve done and although the dystonia’s continued ever since, it’s been less intense than when it began.
But I do find it frustrating when my hands don’t work in the way I want them to, when I drop things, or when they’re painful.
But because I’ve been advised to ignore the dystonia, I’ve often felt unable to voice this frustration or tell people when things change. And that, I suppose, is why, even though it’s been four days since my hands got tighter again, it wasn’t until today that I mentioned it to anyone.
When I told Leftwing Idiot this evening he encouraged me to write about it and reflect on how I’m feeling.
I’m not at all worried by this change. I’ve got used to the idea that my hands are unpredictable, and I know it’s nothing to be concerned about. But it’s felt unnatural not to share this with the people I’m close to, particularly because I’m now finding some tasks harder than before.
Thinking about it now, I recognise that the pressure I felt to keep quiet and carry on was largely self-imposed.
Dystonia’s not particularly well understood and at times I’ve been struggled with the unknowns of this condtion. Writing this has helped me recognise that it doesn’t need to be a problem. I can focus on what I know works for me – taking an open, common-sense approach and looking for practical solutions if and when I need them.
Getting on as usual will play a big part in this but I can see now that I also have to respond naturally, and this means giving myself permission to talk about it, or have the odd moan when things feel difficult.