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 😀 .

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14 thoughts on “Cognitive dysfunction

  1. kneillbc

    It’s interesting that although you feel like your aren’t as sharp as a tack at times, you’re very eloquent in your blog. I had a doctor write in a report that I had ‘no evidence of cognitive dysfunction.’. I was stunned! I must put on a great face; because my brain is nowhere NEAR capacity. He hadn’t asked- just gone from observation. Of course, he never saw the two hours of sleep I would need after he came to my room! The hubs and my close family and friends notice for sure. The recent addition of Zantac (ranitidine) has helped a ton- everybody close to me has noticed. I don’t have the ME, like you, but the mast cell issues alone are enough to massively fog your brain! I also think that requiring this much rest has atrophied by brain. I can’t run it for 18 hours a day anymore- I could be at near full input for days when I was in University. Now, I can sustain full input for maybe 20 min. before I need to rest. I think that our brains are much more sensitive than doctors usually acknowledge. Of course, because chronic illnesses and immune system problems are more prevalent in women, things like ‘brain fog’ are often dismissed as ‘hysteria’ or ‘stress’. I have had ‘brain cramps’ in the past- when I had migraines. Horrendous. I am so sorry to hear that that happens to you. If you’re very careful with your pacing does it happen as much? I hope not- it’s painful just thinking about it! Thank for the summary.
    Karen

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    1. bertieandme Post author

      You’re so right on the dismissal of females with symptoms Karen. Nearly all of my male ME friends have been treated like they were physically ill, whereas most of my female ME friends have been told they are depressed, stressed, hormonal or just weak (despite having exactly the same symptoms as the men!).

      I’m glad my blog posts come across as being fairly eloquent, but oh my they takes AGES to write and by the end of each one I feel like I’ve been in a car crash brain-wise :-/ I guess I’m lucky in that I can type really quickly so that helps, and as I say spellchecker usually catches the worst of my gaffs and dyslexia 😉 I should write a post one day just as I type it and you could all see how illegible my writing really is without electronic help LOL!

      Jak x

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  2. d

    Thanks for the post Jak, I always appreciate how honest you are about your experiences. I have had bouts of brain fog and that sensation of slowed processing, and feeling like you need to clear your head is disturbing. I am just starting to become aware of the impact of information processing. I have not quite sorted it out but I do feel like it’s an area I have not paid attention to that is likely impacting my functioning. I remember reading about it on a mastocytosis site and thinking “for crying out loud even THINKING is bad for me?!”. Given that I have a very hard time turning off my brain I feel like I am in big trouble! : )

    I had no idea how challenging writing is for you, so I appreciate your efforts all the more.

    d

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  3. Tessie O'Steel

    May sound weird, but this is so nice to read! I mean, I never manage to even start to explain; I don’t know where to start, how to describe…but you did that brilliantly. Thank you. Thank you!

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    1. bertieandme Post author

      Thanks for such a lovely comment Tessie 🙂 I agree, these things are almost impossible to put into words and when you do I’m sure people think you’re exaggerating because they find it impossible to imagine living with constant symptoms so bad! Jak x

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  4. Tessie O'Steel

    No need to thank me 🙂 Indeed, they do find it impossible to imagine. Which I, in my turn, can imagine. Another common reply I often get is “yeah, I have that too…” followed by an example that doesn’t even come close to what you tried to describe to them, haha! About your post; I’m considering re-blogging it – only, of course, if you’d be okay with that? Take care…x Tess

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  5. floridaborne

    One of the best things about the Internet is how easy it is to find out you’re not alone.

    With Dyslexia, Tourette’s, Insomnia, and being 1/2 blind, I know “brain fog” quite well. If I remember something that I have to do, I immediately write it down because it won’t be in my brain in 2 minutes (or less). Or I’ll retrace my steps to see if I can job my memory. Sometimes I leave a light on in a room before I do something else (like go to the bathroom) and then I remember I was doing something in that room. This isn’t a recent problem, it’s life long.

    As a child, my sister said that I could have a bookcase with 3 books and I’d have reading material for life. But it wasn’t until I was 30 that someone told me why I couldn’t remember what I read. 🙂

    A sense of humor is important, as well as understanding that there are people in this world that will never (or never want to) understand.

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  6. Tessie O'Steel

    Reblogged this on Tessie's Projects and commented:
    A re-blog! Why? When I read this post on Cognitive dysfunction, I felt so relieved. It perfectly describes some of my struggles that come with ME and it’s companions. And no matter how hard I try, all attempts to describe this to friends, family and others, fail. But here it is, perfectly explained. I want to share this with you, with my friends and family, with all others who try to explain but don’t know how and with those who can’t begin to imagine what it’s like. I want to share my views on happiness and daily life with you, but sometimes also my daily struggles…because that’s also who I am and I’d like you to understand a little. xt

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