LOSING M.E.SELF…
Thought. I had one. I really did, but sometimes I don’t have any - especially when I know I should be having them! I thought about… ah, come on, remember it, try again. No, darn it, it’s gone. Ooh, hang-on, wait! It’s coming. I’ve got it! I actually remember the thought I had 30 seconds ago, aren’t I clever? Pat inner-child on the back.
As I’m congratulating myself on still having something other than cotton wool between my ears, my brain flips itself over (like hitting “refresh” on this page) then crashes and I’m back with an empty archive again. In a muddled mixture of panic, frustration and hope, said brain Googles it’s gormless way on quarter-speed dial-up to the target. Five minutes later, after much cussing - bingo! Be quick! Instant download now! Hold the thought, hold the thought, hold the thought, it’s-a-mantra-hold the thought…
Then, poison arrows of worry and fear for my sanity puncture their way in like another loaded virus, as I desperately attempt to find a notepad & pencil. Must jot idea down NOW as a reminder to silly self not to forget this. Very important, no, VERY URGENT!!! as I underline the word “URGENT” three times applying so much pressure the lead in the pencil snaps. Bugger! Write on shopping list: Pencil sharpener. Do it now! OK. Where is the shopping list? Is it on a yellow post-it on the fridge or on a notepad? Which notepad? In the kitchen, bedroom or in my bag? Oh no! Massive download on the way, stand back for rapid fire thoughts - What bag am I using this week? Must buy another one. Where’d I put the bag? Where is the kitchen? What time is it? What day is it? Is it wheelie bin day tomorrow? Must remember to put it a the kerbside tonight. Should I write a reminder note about that? No, come ON! You will remember the bin, it’s full, it has to go out! What’s the dog’s name again? Who am I? Is it a “tick tablet” night? Was that last night? What was I doing? God, I need a Panodol and/or a gin and/or a lobotomy or have I had one and didn’t notice? Arrrrghhhh. It’s hell.
The main trouble here is even being aware that there exists a fluorescent yellow post-it note stuck with a dozen others that I’ve forgotten to look at. Over time, I have even had a separate notepad designed to remind me to read and a-b-s-o-r-b what I have scribbled on the ever metastesising collage of yellow post-its stuck on the cupboard door… oh, how eighties. How filo-faxy. A little bit “Yuppie”, just like the flu I wished I’d caught instead of this thing…
I tried keeping a personal tape recorder with me for a while. I couldn’t remember to use it at all. I stuck a yellow post-it on the steering wheel in the car to remind me to make notes…I think I became immune to post-its, dumb GP’s, men and politicians around the same time.
Other people who have downloaded ”pirate” neuro-disaster programs will relate to this. Whilst even healthy people are sometimes “absent minded”, MEites get this a lot. Too much. M.E. likes to damage the brain and central nervous system. Cognitive impairment obviously comes with the territory, sooner or later. From my own experience, it’s been a slow progression - put down to high stress at work at first. These days, now retired because of IT and a multitude of other failing body parts, it’s definitely upgrading my gigabytes free of charge.
I’ve always been a methodical person, a hardworking neat freak with a good RAM capacity/memory, patiently working my way through things in a highly organised fashion, never letting up until said job is completed. Nowdays, I try and make phone calls using the TV remote control, wondering why on earth the phone’s not working (muttering obscenities about modern technology). I put things in the fridge or the microwave, like my purse, the toothpaste or hairbrush. I even “forgot” how to use my knife and fork recently. I stared at these shiny objects blankly, knowing I vaguely knew what to do, but the old grey matter just wasn’t having it. My e-mail alert speaks, so I pick up the phone to see who’s at the front door! Sometimes, when the phone rings, I freeze - for the life of me I can’t recall how to answer this noisy ”thing”, but I know it’s upsetting me and that is a damn scary and weird feeling. I feel sooo stupid, when the obvious dawns on me… mainly in the nick of time. It is a horrible shock and has made me realise I need to gobble down some Omega 3’s pronto and start bidding on eBay for a new brain…
I’ve been feeling fairly ”foggy” today, had the usual headaches and rotten M.E. feeling. Felt very tired, but pushed on with things to do and ended up making all sorts of annoying extra work for myself. I must boil the kettle twenty million times and I keep forgetting to make myself a cuppa or eat. If you look in the Humour M.E. Pages there are some real ironies in there! How many do you relate to I wonder?
I gave myself a stern talking to today - out loud, (also becoming a new habit and so is making myself belly-laugh at my daftness) and thought about “testing” myself. I pulled cutlery from the kitchen drawer, placed it on the bench-top and picked up the knife saying to the dog, “Now, this is a… f-f- fork”. The dog, who already knows I’m nuts, just looked at me with her kind brown eyes as if to say, “Mum, I give up. Yes dear, it’s a fork if you want it to be a fork and by the way you are forking mad!”. It made me laugh, which was better than crying, so the dog got excited and knocked over her water bowl, which I tried to clean up with my slipper. I failed my own high tech lunacy test! If you’d have asked me what the spoon was, I probably would have told you it’s an alarm clock and believed it for a moment too long. What is going on?
Early onset dementia? I hope not. I don’t want to end up in a nursing home wearing wet knickers all day and chewing imaginary Mintos, whilst humming the theme tune to “Gilligan’s Island” repeatedly. This sort of taboo thing is enough to freak anyone out. I have dreadful insomnia, which can have a serious effect on cognitive function, it loves frying your brains - so I’m sticking with that theory for now. Beats admitting you’ve really lost the plot doesn’t it?
I’m newly on a waiting list to get an appointment to see a new Neurologist about getting on the waiting list for an appointment for a new MRI and EEG. Some days are worse than others and I have developed pretty bad dyslexia which I didn’t have six months ago. You can imagine how debilitating it is, seeing as I’ve morphed into a near compulsive “blogger” with turbo-charged hypergraphia - weird, cruel M.E. neuro symptom by the way. Watch out Thornbirds woman, I could make all your tomes look like one yellow post-it note!
Talking of good ‘ol Colleen McSomething there, I can hardly read anymore. The words on packets of food mean nothing. The text may as well be in Russian or Hebrew. Not all the time, or I’d be foaming at the mouth having scoffed curried laundry powder, but certainly enough to rattle me. It takes a while to really read something, to take it in and comprehend it. This is new and I don’t like it one bit, especially when it also applies to my own rantings on here. 
It takes me hours, if not days, to complete something for this website. Most of my words are typed lkie shti and I thkin mabye only anohtre M.E.ite might be albe to rede ti - it woudl aslo teg on yoru nesver ikle it dose nime! So, you can see the editing takes hours and is a rotten chore requiring as much focus as I can muster. The same mistake is repeated over and over until I’m tearing my hair out! I can never be sure that what I have written makes any sense at all. I apologise if my posts are still riddled with errors and that I look scary with very little hair.
I’m also dumbing down fast. OK, I am the first to admit that I’ve never been the brightest of sparks, but I ran several companies simultaneously and mostly single-handedly, including the practical work, all the administration, bookkeeping and tax returns etc. Working in a profession that required a reasonable knowledge of basic biology and chemistry, and I also started learning to fly a light aircraft, so I’d like to think I was not completely hopeless, but then again…
The aphraxia is intermittent, yet a real concern. I sometimes can’t get out the words I want, let alone do the inner search for the right word in the first place. It makes me sound and write like a simpleton as my language and communication skills go down the tube. Sometimes I just don’t talk and it takes me a while to “warm up” and get the flow happening, even then it’s with diminished vocabulary, which does upset me deeply. Then, once I’m on a roll, it’s hard to shut up! I constantly butt-in to conversations for fear of losing the thought before the M.E. nabs it. It is a serious race. I’m sure many of my rude interjections need to be canned anyway! Crikey. I can’t win. Inarticulate speech of the heart, eh?
I also don’t recognise people very well. Everyone looks the same really, including me, until I can pick out an individual feature to use as a sort of facial landmark! I even have trouble spotting my own fella down at the jetty and that ‘aint good! If I’m out shopping and approached by someone I’m supposed to know, I panic inside as I wonder who the hell they are for a moment or two. As for names, forget it! I see their mouths moving and take in zilch. It is very frustrating and I can usually bluff my way through it. Same applies to people’s cars, they all look the same to me. I don’t even notice the colour anymore. I have no clue who is waving at me. I’m sure some folks must think I’m very stuck up when I ignore them…sorry guys, it’s not me, it’s M.E.!
Seeing as I have some mobility problems which have caused me a lot of pain and altered my life course anyway, I thought it might be time to fill the long, lonely hours with writing/finishing some faction work I’ve had in storage for years. Writing is becoming the last vestige of communication for this MEite. If this neuro nonsense carries on, that opportunity will be taken away from me too. I’m slowly losing myself. M.E. is a life thief…
No Comments
No comments yet.
Leave a comment
