I live with a brain injury. It’s not officially called that but I don’t know what else to call it. My memory is scarily bad, I do daft things like finding my Kindle in the biscuit cupboard with no memory of putting it there, I can’t recognise people if I see them out of context (a friend from Camera Club for example in the supermarket), I struggle to learn new information, to make even simple decisions (like what to have for lunch) or to concentrate.
Since developing M.E. my reading and writing has gone to shit and the more ill or exhausted I am the worse my reading and writing becomes.
I’ve developed a straneg kind of dyslexia. Again, it’s nt officially called that (it’s not officially called anything becuase I don’t see anyone regarding my ME so it’s never been investigated) but I don’t kno how else to describe it. I frequently miss letter, or whole words, ot of sentences. When I read it back to myself the leters and words are there, even when I’ve checked severalt imes. I’ts only when I go back days later and re-read that I realize entrire words are gone. My spelling is also affected. I usually spell-check everyrhing to within an inch of its life but this paragraph i’ve left as it was tyeps, so you can see how jumped (that’s supposed to be jumbled) my writing is. I’m just thankful I use a cmoputer with spell-check (even if it’s American and can’t fucking spell English😉 ) rather than the written word which no-one eouwl be able ot read. i’m going back to spell-check for the rest of this post you’ll be pleased to know!
Reading when you have M.E. is tortuous. My whole life I’ve loved books. In fact, I’d go so far as to say that reading saved my life as a child. I could leave my shitty reality behind and escape to other worlds, or read about people whose lives were as shitty as mine so I didn’t feel quite so alone. M.E. has robbed me of one of my greatest treasures.
When I’m very tired the words on the page start to change colour. Usually lime green for some strange reason, with a hint of purple thrown in for good measure. That’s when I know I’ve done too much and need to rest.
Or the letters move about on the page, sometimes swimming animatedly, other times stationary but shifted. Here’s an interpretation of what I see:
You can image how challenging blogging is when faced with this kind of brain impairment (I’ve just had 4 fucking attempts at spelling “when” and 3 attempts at spelling “attempts”!). It’s time consuming and frustrating. I miss my old brain more than words can say (or spell ;-)).
Research into M.E. doesn’t focus on cognition problems. We know people with M.E. have “brain symptoms” but they’re often passed off as a minor issue, despite the fact they can be a huge barrier to the world and our ability to exist within it, especially in this computer age where typing and reading the written word are fundamental to survival especially if you’re largely housebound or bedbound.
I just crack on with it, as I crack on with everything else. Stumbling my way through life in a haze of fog with a brain which feels like it’s fundamentally broken. Just typing this page has been a monumental effort and I can honestly say my noggin is now hurting, kind’ve pounding and literally on the verge of shutdown. If I were to try speaking now I’m fairly sure nothing would come out.
My friend Laura has shared some great quotes on her Facebook page this week, so I’m finishing with one which resonated for me, particularly in light of my brain issues: