The term “cognitive dysfunction” is given to symptoms which affect mental processes such as memory and reasoning, but is more commonly used by patients to describe any kind of brain symptoms. I’ve always put my cognitive issues down to having M.E., but people with Ehlers-Danlos, POTS, Fibromyalgia, Lyme and MCAD also suffer with brain symptoms, so cognitive dysfunction is common to many diseases.
- Brain fog
This is one of the most commonly reported cognitive symptoms. For me it feels like I’ve been woken at 4am from a deep sleep, fuzzy and heavy headed, with unclear thought processes, feeling confused and not really ‘with it’. Or like someone’s slipped me a sedative and I’m trying to fight my way through an altered state of consciousness. Other people describe it like their thoughts are wading through treacle. At times it’s so bad that my brain literally freezes and I have no choice other than to just lie down and wait for it to kick-start again. I haven’t had one single day in over 20 years where my brain has felt clear and it sucks.
I’ve never had good long-term memory and am not one of those people who can hear a song and say which year I was in at school when it was in the Charts. But my short-term memory was always excellent and when studying I just learned things off-by-heart (I can still recite nearly every word of Grey’s ‘Elergy Written in a Country Churchyard’ I learned for my ‘O’ level English exam when I was 16!). Sadly my short-term memory has now been robbed by my illnesses and there are days where I feel like I’m in the early stages of Dementia, with neither my long-term nor my short-term memory working well. It’s scary, particularly when you live alone. I wander into rooms and have no clue why I’m there. I forget entire conversations I had only hours earlier. Thank god for post-it notes and the Task alarm on my mobile phone, without which I would not take my medication, put the bins out for collection, order my groceries or do any other of the 101 things needed to get through every day life. On the up-side, I can’t remember a book I read last month so get to read it all over again without remembering the plot or any of the characters 😉
When I was severely affected by M.E. I developed a severe stammer which thankfully disappeared as I improved (though still comes back on my worst days) and for a whole year was unable to speak at all – I knew what I wanted to say but the words just couldn’t find their way out. I have difficulties at times with slurred speech, which I put down to tired tongue muscles but which could also be some kind of brain symptom – there are days when I know I sound drunk (I wish!). One of my worst problems, however, is muddling my words up: knowing I want to say “dog” but coming out with “bog”! It’s so embarrassing and there are days I sound like a complete loony toons, coming out with gobbledygook that makes no sense whatsoever. What with saying the wrong words and even those said like I’m drunk I dread to think what Joe Public makes of me 😉
One of the first things I noticed when starting to develop M.E. was that I’d become dyslexic, frequently switching letters or writing the correct letter but back-to-front. Writing these blog posts I’m just so thankful for spellcheck, otherwise you’d be raebing a laod of odl triep 😉 . There are days when I can’t remember how to spell the most basic of words, like “it” or “of” and I have to remember old nursery school rhymes for more complex words like niece (“i before e except after c”) 😉 . It’s exhausting!
- Information processing:
When I hear about people with M.E. doing ‘A’ levels, or even going to University, I am totally gobsmacked. There are days I can’t even make sense of my shopping list, let alone write a Dissertation, and can only read about 5 pages of a book before my brain is simply overloaded and I have to quit. When I was severely affected I could only watch TV in 10 minute chunks before I felt like the inside of my skull was being battered with a hammer, and even now there’s no way on earth I could watch a film all in one go. Learning anything new is tortuous and when I bought my DSLR camera it took me an entire year just to read the instruction book and make some kind of sense of it and another 2 whole years for the instructions to actually sink in! This is why I don’t buy gadgets – it took me a year to learn how to use the mobile phone I already have without then upgrading it and having to start all over again 😉
- The weird and the wacky:
There are lots of symptoms which aren’t technically to do with cognition, but are brain related. For me these include:
– Seizures, which I used to have lots of when severely affected but which thankfully have now resolved.
– Altered sensation in my head, ie pins & needles, buzzing, electric shocks, numbness, goosebumbs, tingling and crawling.
– Feelings of unreality. Have you ever had a bad shock and kind’ve felt like you’re having an out of body experience? You’re physically present but you feel like you’re looking at the situation from afar or like you’re on some kind of autopilot? I feel like that every day of my life.
– Dizziness and vertigo. Feelings of movement when stationary (I usually feel like the room has suddenly shifted to the side and then back again), or feeling like the ground is coming up to meet me when walking or that I’m walking on the waves of the sea.
– Cramps, which feel just like they sound, ie. like having a leg cramp only in my brain which is really sodding painful.
– Inappropriate behaviours, eg putting my socks away in the fridge instead of the sock drawer, or feeding the dog butter instead of dog food (not that he minds one iota!).
– Sensory changes: heightened sensitivity to light, noise, touch, taste, smell, vibration and movement. When I was severely affected these were amongst my most debilitating symptoms but have now largely resolved.
I’ve probably missed out several other brain-related symptoms but to be honest after writing all this I’m tired now so my memory and ability to think is fading – my dyslexia is also worsening the more tired I become and I wish you could see just how many mistakes I’ve made just writing this one sentence! There’s also the fact that I’ve lived with these symptoms for 2 decades now, so to me it’s just become the norm. I forget how my brain should function and that all the issues I have on a daily basis aren’t normal.
Cognitive symptoms are almost impossible to treat, as the cause is unknown. I tried just about every drug and supplement known to man to try and ease my brain fog and none of them helped. The good news is that, as my M.E. improved, my brain symptoms became less intense and some, like noise and light sensitivity, are now very minimal and only bother me on really bad days. As for the rest I just had to find a way around them, like using alarms, spellchecker and endless lists – now if only I could remember where I put the lists they’d be super helpful 😀 .