Brain fog

A cardinal symptom of M.E. is “brain fog”, but it’s also common in other diseases like EDS and MCAD.  Before my drug allergies kicked in I’ve been sedated (using valium/diazepam) for various medical procedures and that’s just how brain fog feels to me – like it’s 4am and someone has just woken me from a very, very deep sleep.  I’m groggy, dizzy, disorientated, confused, seeing coloured stars and can’t think clearly.  Only I have to live every waking moment like that.

On top of the sleepy fuzzy dizzy grogginess I also have problems with short-term memory, information processing and my problem solving skills have done a bunk.

Yesterday was a classic “brain fog” day for me.  I stood in the kitchen to make breakfast and it took me several minutes to remember why I was there and what I usually eat (toast, every morning for 2 years!).  I had to go into town and got chatting to a shop assistant who we discovered used to live in my village.  We were discussing our mutual acquaintances and she asked me what my cousin was called.  Could I remember?  That would be a big fat no.  On Tuesdays and Fridays I have some yeast-free bread put aside in a local deli.  So I went to collect it.  The assistant looked at me like I was nuts and said “er, did you ask for bread to be put aside today?”  Me: “why, what day is it?”  Assistant: “Wednesday”.  Me: “That would be a no then” 😉

My short-term memory problems probably cause me the most hassle.  My mobile alarm pings several times a day to tell me to do stuff: put the bins out, book my Tesco shopping, collect my bread (!), water the houseplants…… Without it nothing would get done.

Blogging is a huge challenge.  I’m effectively writing these posts with a brain injury, so when readers pick me up on little things like I haven’t included this or that, or I haven’t expressed myself particularly well, it really does rankle cos I’m doing my best.  I’m simply not clear headed enough to read the post back several times to make sure nothing I’ve said could be mis-construed and I dno’t have the energy to worry about whether my humour is translating well in 180 other countries, whether I’ve been tactful enough or whether I’ve included every single piece of relevant information (it’s a blog, not Wikipedia).  Thank God for spellchecker.  Since I went down with M.E. I have developed some kind of dyslexia.  I write letters back to front, can’t spell for toffee and often miss entire words out.  One of these days I’m going to publish a blog post without spell checking it and you’ll be able to see just how terrible my writing really is!

Pre-illness my brain was sharp as a tack and I miss it.  I miss being able to have indepth conversations about politics or the state of the economy.  I miss having a solution for any problem I was presented with.  I miss being able to spell.  I miss being able to express my thoughts well.  I miss my memory.  I miss seeing the world clearly.  I miss being awake.

Over the years I’ve adapted to many aspects of my illnesses and forget now what being healthy was like, but I’ve never adapted to my brain fog.  I can still remember what it’s like to have a clear head, even though it’s been 21 years since I had a clear head for any second of any day, and I still miss it.  I always will.

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9 thoughts on “Brain fog

  1. Chrissy

    You are amazingly eloquent, witty and downright hilarious In your observations and writings. I think you do incredibly well with all your problems and so admire your tenacity in punching through. I wish I had your strength to cope as well as you do. Struggling rather a bit at the moment.

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    1. Jak Post author

      That’s such a kind, generous comment Chrissy thank you 🙂 So sorry to hear you’re struggling – I struggled for the first 6 years, so haven’t always been this good at coping. Hugs x

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  2. Glo

    You write better with brain fog then I do when my brain is clear. I don’t have brain fog everyday but I do get it. People just think it’s early senility or I’m not very bright. I’ve tried to explain it to people but of course as they’ve never had it and it’s not a common side effect of most illnesses they just don’t believe in it. I’m very tired of people thinking I’m perfectly healthy and expecting miracles. I’m tired and just want to sleep for days. I’m still working which is good because of the money but totally exhausting. Then there are the people being offended if I don’t eat things they bring in or they think I’m just being silly. Have even brought in the low histamine diet thing for them to see and they still don’t really get it. It’s another fad diet to most. Sorry for your foggy brain, I understand the frustration but you do a wonderful job with this blog. Before I found this I was frustrated by many things I read. You understand and put stuff out there truthfully with no sugar coating. I love it. It’s what people need to see so we know at least one other person gets it. Thank you for all the effort you put forth to create this place of truth. You’re amazing!

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    1. Jak Post author

      Aww, bless you for that Glo. Sorry to hear those around you don’t understand. I guess til I got sick I wouldn’t have understood either 😦 You don’t wish this on anyone, but some days you honestly hope they get sick for just a week or two then they’d have some inkling of what we go through every day!

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  3. Chrissy

    Totally agree with you. I have lost two very close friends just recently over the whole thing, a friend of 30 years standing told me it was all in my head. Get back to eating normal foods and stop whingeing!!!! I was so so hurt. When we parted and she said will phone in a couple of weeks, I just said no worries, no rush. You try to explain and because it is a little known illness people think you made it up. How you all manage to cope I do not know. I am early into this journey. Just a year and it depresses me no end. I just will not talk about it anymore. People say I am neurotic. Fallen out with my brother and family. Even my daughter said the other day Mum, you just go from one crisis to another. If I have had HIT or MCAD all my life, then bloody hell, yes, I have had issues with health. I had cataracts done at the age of 50. My surgeon said in all the years he has done this never one this young!! did I sodding well make this up then??? No answers, no cure, no help. Rant over. Glad I found this site and others struggling to cope too. Rock on you lot, especially Jak. Xx

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  4. kneillbc

    I feel your pain!!! Its so damned frustrating! I used to have a GREAT brain. Rote memorization was not a top skill, but I didn’t need it- I had a near-photographic memory. Not any more.
    I had a bad reaction last Thursday- I’m still confused. I will go for a rest, get up in five minutes, go out to say hi to the Hubs, and he’s like “Um, did you sleep?” I thought I’d been asleep for two hours. I keep getting confused as to what time of day it is- look at my clock at see 6, think 6 am instead of pm. One thing I miss, a lot, is watching movies. By the time I get to the end, I can’t remember what happened at the beginning.
    It also gets me with working memory- the ability to hold several thoughts at once. Poof, gone. One thought at a time, and I often loose that.

    It makes me wonder- what if some of other cognitive issues (dimentia, depression, alzeimer’s etc.) are related. I went through a bout of depression shortly after the Hubs and I moved in together- my diet changed overnight… Things that make you go ‘hmmmm’.

    Big hug Jak. And the other commentators are bang on- you write more eloquently than most un-impaired people do! You have a natural talent. Maybe not being able to over think it helps. It keeps the writing fresh, natural, conversational, which is exactly what a blog should be!

    K

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    1. Jak Post author

      I so relate to the movie watching thing Karen! I get sooo confused with who the characters are. And because of my sensory overload I can’t watch anything with fast moving images and the damned filmakers these days seem hellbent on using flashing/jumping scenes to weave timelines or plots together. By the time I get to the end I feel like I’ve been in a car wreck 😉 Mind you, I can read a book 5 times over and not remember any of the plot, so that’s good – I used to spend a fortune on books and now I can just read the same one over and over lol! x

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  5. naturallymum

    Timers are becoming an essential for me too, but I really hate being told what to do, even by my own alarm.

    For me, the most difficult thing is not being able to trust my memory. Not the things I do remember but the things I haven’t. I can’t count the number of times I have told my children off when really my memory is to blame. It’s like having a partner who’s undermining you at every turn 😦

    A on a good note I get more exercise as I walk around the house remembering and then forgetting what I was doing!

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  6. Bugsmetwo

    I completely understand. I am still mourning over the loss of my functional wonderful brain 14 years ago! I hate not being able to think, write, speak or manage thoughts the way I used too.

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