Tag Archives: speech

Brain Fog

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.

 

Cognitive dysfunction

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.
  • Memory:
    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 😉
  • Speech:
    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 😉
  • Writing:
    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 😀 .