Gone are the days when I could throw together a piece of ikea flat pack furniture and not just because I am physically weaker. Cognitively I’ve taken a hit too. M.E is a neurological condition afterall.
I’m working on my cognitive function. In the same way I do a few stretches everyday I need to give my brain a little bit of a workout, within reason.
I’m teaching and trusting Mr Brain to follow instructions correctly. He gets incredibly confused so it’s important to retrain him when I’m well enough to. Everyone gets this whether they have our medical condition or not. How many of you have gone upstairs for something and them forgotten what it was you went for? Or put the milk in the oven instead of the fridge? For us though this is yet another symptom, or factor to contend with. You might not notice it when you see me but inside my brain is working overtime to follow the conversation we’re having, to think up the appropriate response, to remember what has already been said…
I found Cupcakes for Clara on Not On The Highstreet ( perhaps my favourite online shop) These kits are aimed at children but that’s perfect for me in my current state of ill health.
I can’t do more than about twenty stitches at a time. I then have a break or a rest and do a bit more sewing when I can. There’s no rush. Infact I’ve maybe done my twenty stitches for today.* I now might have to miss out some of my targets for today because I’ve been wild and done this bit of sewing. That’s how severe and serious our condition is. We can’t have it all. Far from it.
My arms ache but that’ll be because they haven’t been used properly for quite a while and not just because of the illness. (For some reason my knees hurt! Silly body!) Activites like this are improving my motor skills too. I’ve successfully cut out the pieces of felt, threaded the needle… These are things I couldn’t even dream about at one time.
I have to be extremely careful though. When the post exertional malaise kicks in it is far from pleasant so you have to learn to stop well before you trigger such a reaction. I’m still learning when that is though. The feeling of having insects crawling around under my scalp, or an itchy brain as I call it, is a telltale sign that I should have stopped about 10 minutes ago. It’s very, very tricky.
These kits are leaving me with a huge sense of achievement. Huge. My friends are working 9-5 or more and I’m here, taking days or maybe weeks, to sew together a rabbit. I find it most amusing.
You see we mustn’t compare ourselves against others (with the same condition or otherwise.) We must try to take pleasure in what we can do, even if that’s being able to lie for hours on end in a darkened room alone…without completely losing your marbles.
*After saying I had probably done my twenty stitches for the day, I carried on only to end up coming over very poorly very suddenly, lying in a heap on the bathroom floor only managing to crawl around and needing to throw up. I still find these sudden crashes very scary but I try to stay calm. I did manage to ring my parents, who were at work, for help though. I got the balance wrong. This was earlier this week and I’ve been wiped out ever since. I still don’t feel strong enough to have a shower or a wash and get changed, never mind my other targets. All because of some sewing!
We suffer so badly for something as minuscule as doing twenty more stitches than we should have done.
M.E. myself and I 