My Fuddled Brain

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.

 

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10 thoughts on “My Fuddled Brain

  1. POTSNJ

    Yup, you captured it perfectly. And made me laugh! I can imagine a blog article this size would take a while to complete with our challenges. A 1/2 paragraph facebook posting takes me like 20 minutes to compose. LOL. Seriously though, the cognitive dysfunction is frustrating, sometimes scary and really one of the most challenging symptoms I deal with.

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  2. Marley

    I enter a room with the intention of finding an item. Somehow when I get in that room my memory has disappeared as to what that item was. I have the brain fog too. I was meeting with a Physician yesterday with notes in front of me of issues to ask about. I noticed at least 3 times I was speaking about a point I wanted to make and forgot the point. I am worried about my brain for another reason also. Since October of 2012, the year I was diagnosed by bone marrow biopsy with Systemic Mastocytosis(SM), I had my first Brain MRI (they run about 30 minutes and then inject contrast dye into an arm vein and run the MRI for about 15 more minutes).
    There can be Neurological complications of SM and what the Doctors see if anything at all, are white spots throughout the brain. Somewhat like what can be seen in Multiple Sclerosis.

    I didn’t have any of those spots. The entire covering of my brain lit up on the Brain MRI with contrast test. They called it “Pachymal Meningeal Enhancement”. Two thin meningeal coverings
    of my brain were full of a dense material to this day as yet unknown.

    Neurology did a spinal tap with no answer, only to repeat the Brain MRI every 6 months for a total of 3 times. A blood ACE test did not show Sarcoidosis. Dr. Maria Castells, PhD, MD, Allergist/Immunologist in Boston has agreed to see me for 40 minutes this July. I also stay in Boston for a few days more after if additional tests are needed.

    In Georgia where I live, there is one Oncologist with experience in Systemic Mastocytosis. The total number of SM patients followed at the Medical Center where that MD works is 25 patients.
    The most patients with Systemic Mastocytosis seen in the United States are seen in Boston, Massachusetts, by Dr. Maria Castells. Her name was mentioned in one of your links with Dr. Anne Maitland, PhD, MD of Mt. Sinai Medical Center, NYC, who was giving a video talk on EDS and mast cells. I appreciate you finding that video and I learned a lot from it about mast cells.

    Dr. Maitland did a fellowship under Dr. Castells and referred to her as the “Fiery Spaniard” on
    that video. I shall see. At least when one writes, you can go back and edit. Not so if you talk and forget what it is you are talking about! Since December, I have piled things up high on my dining room table. Things that I just don’t want to deal with or figure out. I detest paying bills and got some late fees. I used to be good at details and following thru. I did manage to see a Dietician at the Cancer Center for the first time and they followed the same Journal Article on a low histamine diet that you provided in your blog. Many thanks!! Marley

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  3. Jill Jarvis

    🙂 Have to say I giggled through most of this blog (in the nicest way!)…. because everything, after the first 2 paragraphs, you report happens to you, happens to me on an every day basis. We have that middle age thing but with a totally added M.E. volume to it.

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    1. bertieandme Post author

      I think I need to have a funeral for my brain and plant a nice little tree in the garden in its memory cos it’s obviously never coming back at my age! 😉

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  4. kneillbc

    I feel your frustration! I had a doctor the other day talk about how he truly felt like I have very intact cognitive function. I nearly fell out of my chair! For me the most frustrating thing is no longer being able to read novels. I used to read about one book every week (two weeks at most if it was very long or I was very busy). I can’t read them at all anymore! I miss them. I know part of it is due to some of my meds (narcotics will do that to you), and I hope less of it Is due to my MCAD. I do hope it stabilized for you- I know how frightening it can be!
    Karen

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    1. bertieandme Post author

      Thanks Karen. I find it bizarre that I can be so confused, forgetful and muddled yet still ace a Mensa intelligence test! I’ve always felt that part of my brain is still totally normal and sharp, but other parts are totally disease riddled.

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  5. Gail Wautlet

    Thanks for the laugh! It wouldn’t be so funny if it weren’t true. I was just having a conversation with my husband and son and wanted to say more but stayed quiet because we were talking about old friends and I could not remember the names of anyone. Then the conversation changed to movies and I couldn’t remember the of names of actors and actresses. It sad when you can’t hold up your end in a conversation, I used to love the art of a good one. I still admire a good story teller. Now I dread it when I see someone I know and will go out of my way to avoid them. Ugh!

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  6. Gem

    I remember when I was at my worst with M.E. trying to do a test that I think the doctors use for cognitive dysfunction which is simply count backwards from 100 subtracting 7 each time. So I said to myself “100, 93…..” and then for ages I tried to work out what 93-7 was and I literally felt like I was going to cry! My brain couldn’t do it! I think by the time I got to the 70’s I gave up – it was too hard and I felt exhausted!
    I’m not half as bad now but I do notice a worsening of symptoms after certain dietary substances – like if I have any artificial sweetener or nitrites as well. Reading is still a challenge. I also notice that I find it much harder to read a book if I have been on the computer for a while. Strange!!

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    1. bertieandme Post author

      I can’t count forwards let alone backwards, and if they’d asked me to subtract at the same time I probably would’ve just thrown the towel in before I started lol! x

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