I find the problems I have with memory, thinking and cognition are the hardest to explain to healthy people. ‘Brain fog’ is a common term used by M.E. and EDS sufferers, but to me it trivializes a very serious problem and doesn’t go anywhere near to describing my speech, language, thought and processing difficulties.
I have woken this morning with quite bad ‘brain fog’. I feel like my body has woken up, but my head still thinks it’s 3am and is still sleeping. It’s that muddled kind’ve a feeling when you’re in deep slumber and something suddenly wakes you – you try to focus and be alert but most of your thought processes are still in the land of nod. It feels like you’re drugged, like someone has slipped you a couple of Valium and then asked you to do quadratic equations and is pressuring you for the answers.
My ‘brain fog’ is a physical thing culminating in a numb patch right between my eyes. If I press there on my browbone it’s actually tender. When I was severely affected with M.E. it also used to throb – a banging, pulsating, rhythmic pressure right between my eyes which made thought impossible.
I woke this morning and turned on the TV to watch the news. The images hurt my eyes. Each flash of moving picture made me motion-sick and felt like an explosion in my brain, a bit like being drunk at a disco with flashing lights. I have to look away and wait for the ‘still’ images of the presenters to come back on. I’m really nauseous.
I feel dizzy and disoriented. Lights are too bright, sounds are too loud. My brain feels hung over, but with none of the fun of the night before.
My ‘dyslexia’ (for want of a better diagnosis) is off the charts. I’f (I’m leaving that as I’ve just typed it so you can see what I mean!) I’d left this blog post as I’d written it you woudn’t (another mis-spelling) be able to raed (and another) it. Honest (that should be honestly) it takes me an hour to type each of my blog posts and most of that is reading and re-reading them back to correct errors (thank God for spell-checker!).
My memory is scarily bad. If I’d taken out shares in post-it notes I’d be rich by now. I can’t trust my brain to remember anything, so have to write everything down. I have a personal organizer in which I write all my appointments, but then I forget to look at it – it just ceases to exist in my mind. So every Sunday night I sit and write little cards of what I need to do each day that week, and put each day’s note on top of my mobile phone so that when I turn my phone on in a morning I see the note. I find my memory issues cause huge frustration in other people, especially those that don’t know me well. I’ve lost count of the times at Camera Club that someone has said “I’ve already told you that, twice!” or who look at me strangely when I ask a question and I realize I’m supposed to already know the answer but don’t. Last year I asked one of the members “do you live in town?” and he looked at me like I’d grown two heads because I’d actually been to his house the week before to pick him up! I do tell people I have a brain injury but because I’m not elderly and because I “look fine” they don’t seem to grasp the fact that my brain is damaged and doesn’t function normally 😦
Learning new things is tortuous. The current trend of technology manufacturers to keep making ‘new’ and ‘improved’ versions of phones, computers and the like drives me insane. It took me over 6 months to learn the basics of my new smart-phone and 6 months later my provider wanted me to upgrade. No way Pedro! (apologies for the UK humour there which no-one but us Brits will get 😉 )
My sense of humour has done a bunk. In order to be witty (and I did used to be witty) your brain has to be sharp and on the ball not drunk and disorderly and stoned on imaginary benzos. I miss being funny – it used to be a large part of my identity and I feel boring without it.
So basically I can’t spell or do math, I can’t remember what I did 2 hours ago let alone last week, I can’t watch a film without feeling car-sick, my speech is drunk, I can’t follow conversations well, my wit has done a runner and every thought I have has to wade through a muddy swamp in order to make it to the outside world and when it finally reaches daylight it’s disoriented and a bit dishevelled.
Yet I “look fine”. And deep inside my brain I’m still the same old me. Still as sharp and witty and with-it as ever but I’m somehow trapped inside my skull and only a shadow of myself can escape and make a bid for freedom. My biggest wish is that healthy people would cut me some slack. Would realize the difficulties I face every hour of every day. I know it’s frustrating for them but I want to shout “if it’s frustrating for you imagine what it’s like for me!” I wish they’d stop expecting me to be ‘normal’ and stop pressuring me to be healthy because I’m not. If I were elderly there would be a lot more understanding of my limitations but because I’m in my forties I’m made to feel like I’m just being ditzy.
People ask about my body. When a joint is braced they ask what happened. When I’m wearing my TENS machine they empathise with my back pain. When I’m wearing my finger splints they ask why. But when I talk about my brain injury there is an embarrassed silence and then it’s never mentioned again. I’m somehow made to feel like if only I were more organized, more together, or tried harder my brain would be miraculously cured. If only.