M.E. and dysautonomia both produce symptoms of “cognitive dysfunction”, in other words your ability to think clearly, remember things, concentrate and/or process new information. To me, it’s always felt like I’m drugged or have been in a car accident and suffered some kind of brain injury. Writing a shopping list feels like I’ve been woken at 4am and asked to recite War & Peace in a deep state of foggy stupor – I can feel my brain hunting in its murky depths for the information and I have to grasp at odd words like “toilet paper” as they float past in the gloom. When I’ve had to concentrate (to write this blog post for example) my brain feels battered and bruised and eventually starts to thump, and if I keep on going the room will eventually begin to spin.
My lack of memory scares me. I got in the car the other day and for several minutes forgot how to start it. I write important lists of things I absolutely have to do, then either forget where I’ve left them or if I remember where they are I forget to look at them. I dread meeting new people because it might take me the next 5 years to remember their face let alone their name. I forget passwords, pin numbers and my own telephone number (that I’ve had for 10 years). I wrote a cheque the other day and couldn’t remember how to write the date.
The other thing that scares me is a weird ability to block things out. For example, last week I needed to remember to take a bag of items to my Mum’s house and knew I’d forget. So I placed it on the kitchen counter, with my car keys on top of the bag – have to pick my keys up, consequently I’d have to pick the bag up. Er……..nope. Picked the keys up and didn’t even register the bag was there – it might as well have been invisible. Last month I had a dental appointment, after which I needed to go to the supermarket for some bread. Dropped my dog off at my Mum’s and drove the 3 minutes up the road to the Dentist. Got to the supermarket, bought the bread, and only realized as I walked back to the car that I hadn’t actually been to the dentist yet! For someone who was always totally on the ball it’s frightening to have these bizarre kinds of blackouts.
My lack of ability to concentrate frustrates the hell out of me. I haven’t watched a film in one sitting since 1996 and Lost was easier to follow than the plot in my favourite Soap 😉 . Reading anything more taxing than the TV Listings magazine blows every brain cell in my head and if a book contains more than 3 characters I have to make a list of who’s who. And don’t get me started on the embarrassment factor of chatting to someone and suddenly realizing there’s silence and I’m expected to say something, only I zoned out ages ago and have no clue what the question was. This inability to maintain concentration has a profound effect on learning new things, which I long ago stopped trying to do. I dread needing a new mobile that’s different to my last one and panicked this morning when I realized my Sky tv box had updated in the night and now looked totally different – trying to learn a new way of doing things is a bit like trying to catch fog.
Then there’s the inappropriate actions, which I’m putting in the “lack of concentration” category but I really don’t know the cause of. For example, I keep my dog food in the fridge. Went to get it out yesterday morning and was walking up the hall to put it in the dog bowl when I realized I was actually clutching a tub of margarine. Then there’s trying to change the channel on the TV with the handset of my cordless phone, or opening my sock draw to find a bag of carrots and no sign of the pink knee-highs I was looking for (don’t ask!). I lose things constantly and they often turn up 6 months later in some obscure and wacky place they don’t belong.
I was never very good at maths but since getting sick I literally have to count on my fingers, and my ability to spell (which I’ve just typed as speal) has totally done a bunk. There are times I forget how to write the most basic of words, like “the” or “of”, or use all the right letters but put them in the wrogn order 😉 . I have not written a single blog post which hasn’t contained a typo, despite the fact I check the damned thing 10 times before it’s published. When I’m really tired and am trying to read, the text goes green or purple and swims about on the page – not sure what that’s all about but it’s a good indication that my poor struggling noggin needs a rest.
Cognitive dysfunction can also affect speech and when I was really ill I developed a stammer which would come and go, and at times I lost the ability to speak altogether. I also forget the names of things constantly – there’s just a black hole where the word is supposed to be – or use the wrong word for simple every day objects (eg. fur instead of dog). I spoke to my Uncle in Australia last week and called him by his first name, forgetting to put “Uncle” in front, which I know is trivial but felt really disrespectful. And when I’m really tired my speech becomes slurred like I’m drunk (I wish!).
As I’m entering menopause my brain function has gone from fairly addled to totally scrambled, to the point where I wonder if I’m starting with early dementia. When I talk to my Mum about it, however, she just laughs and says “welcome to middle age”! I know even healthy women get forgetful when they’re menopausal, but when this comes on top of already quite scary brain function it does feel a bit (ok, a lot) like I’m losing the plot.