Cognitive dysfunction is hard. I have been pushing myself recently to get some things organised. I’ve been using my brain more than usual, and now I find myself unable to use my mind for even simple tasks. Writing this is extremely difficult, and I know it won’t be very articulate, but I wanted to write anyway because this is part and parcel of life with M.E.
I’m a pretty articulate person, and I’m reasonably intelligent. I did well in school and studied at university. I’ve never been the cleverest person in the room, but I’m used to being able to follow what’s being said, and to being able to think out new problems and express myself. Right now I can’t spell – if it wasn’t for predictive text this would be illegible. I can’t count or organise the different simple tasks it takes to make a meal – I can’t fathom out how to do them in the right order.
I can’t follow more than a very simple conversation. It takes all my effort to concentrate on the words being said to me and keep them in the same order so that they make sense. If the person speaks too quickly or switches topic, or if someone else interrupts with another subject, I lose a handle on everything. I can’t make a simple decision like what I want to drink. Speaking is hard. My words come slowly, sometimes slurred, sometimes stuttering. I lose track of what I’m saying or forget the words I want. I um and er my way through a simple ‘thank you’, and rely on the patience of those around me to wait for me to get out what I want to say, and to figure out what I actually meant.
I can’t read. If try I find myself reading the words in the wrong order it missing some out – they dance around. Even if I do manage to read each word, it’s such a huge effort to concentrate on each individual word at a time, in the right order, and read it that I completely lose the meaning of the sentence. I can’t read back what I’ve just written to make sure it makes sense.
I don’t know if everyone finds this as difficult as I do, or if my view of myself – my identity – is so wrapped up in being articulate and mentally able that it makes it harder. Maybe it’s simple pride. It’s very frightening though, being this confused. You rely on others to be telling you the truth or reminding you of important things. You have a constant feeling that you’ve forgotten something or are missing something that makes life feel very uncertain and scary. It’s also hard to reflect well – memories slip away, the future is impossible to comprehend as that involves thinking, planning, predicting, imagining – you’re in a constant state of now, so it’s hard to keep a grasp on the idea that things will ever be different. Better. You’re in a constant state of now, with no tangible past or future.
I know that when my Nana was getting dementia she got angry at times. The confusion and the fear can make you angry and frustrated. I do think about her when this happens, and feel glad that we didn’t get cross with her for it
I’m hoping this will pass. That since I have exerted myself mentally, it is my brain and my mind that are taking the brunt of the crash. I hope to be able to write more regularly again soon, and more articulately. But only time will tell. As is always the way with M.E, you’re never really sure what’s around the corner. So I’ll do my best to rest my body and my mind, and wait and see if what I have lost comes back to me this time..