Wednesday 2 June 2010

Michelle VS The Brain Fog

It's one of those weeks where Eunice has taken leave and left me with zero brain cells, so I'm cheating and posting a post I wrote for DARE.  Appropriately it's about brain fog. 

I’ve been sitting here off and on for the past few hours trying to think of a topic to write about. Actually if I’m honest I have been sitting here trying to get my brain to form a single cohesive thought. Never mind making that thought into a sentence. Never mind getting my fingers to move in some sort of coordinated effort on the keyboard to form the words into something tangible. Never mind forgetting how to spell simple words like ‘and’, or even that ‘and’ is a word, or how to use it in a sentence. Brain fog strikes again, and I am lost for words once more.

For me this is perhaps the most annoying and disabling symptom that Dysautonomia has thrown my way. Once upon a time I had a brain, I know I did. I have proof on my study wall. Now I’m starting to think that my brain has made a run for it. I’m pretty sure that it is now sunning itself on a beach in Majorca and drinking margaritas, whilst I sit here lobotomized, pondering the fluff in my navel.

Frustrating doesn’t really begin to explain how this makes me feel. My brain has always been the one thing I had going for me. I could juggle complex information with ease. Be it work, academia or a round of Trivial Pursuit, I had it going on. My career choice, neuropsychology, involves the study of the brain, in particular cognitive abilities. Lordy, that makes me giggle now. Suddenly I have strains of Alanis Morissette’s Ironic*, running through my mind. (Brain fog had me calling her Alyssa Marionette for the past ½ hour without even tweaking, sigh).

I specialised in working with the elderly. I wrote protocols for managing delirium. I wrote rehabilitation and management plans for various cognitive deficits. I was the go to girl for the most complex and confusing cases. If someone was violent, or had issues with personal hygiene or body fluids, I was the girl who worked out how to manage the behaviour (hmmm on second thoughts maybe I don’t miss work so much). Now on my bad days I can make some of my ex-patients look like Einstein, and that includes the guy who thought using a metal cheese grater to itch his leg was the logical choice (if nothing else my job was never dull).

I know now that I couldn’t go back to the work I was doing. In many respects I don’t know if I would trust myself enough to get it right. The responsibility and consequences involved mean you have to be permanently on your A game and at this point I’d struggle to be the orange girl. I have to accept that particular part of my life is over and I’m onto a new chapter. If I do sit and think about it I have come to terms with not working (and I was truly devastated when I gave up work), and when I think logically about the long hours, stress and politics I don’t know if I would want to go back there.

Even no longer working brain fog and I are in a very unhealthy relationship. Hence I find milk in the cupboard and empty saucepans on the lit gas hob. I forget to wash school clothes or fill in excursion forms. I go to the shops and forget my list. Forget I even had a list and come home with yet another packet of toilet paper to add to the 46 I’ve already brought, but minus the bread for sandwiches that I initially went out for.

I frequently can’t find the words I want to use, so talk a lot about ‘thingies’. Conversely I will say the wrong word and not even realise. On bad days I slur like I’ve just knocked back a bottle of tequila, including the worm. If only. Even reading is often hard as I find it hard to maintain my concentration. I look back at things I wrote before becoming ill and I am amazed that I was so eloquent. I look back at my doctoral thesis and I can’t even follow half of what I wrote, yet I know it makes sense, just not to my befuddled brain. It’s like wading through quicksand and I’m sinking fast. It’s exhausting.

Logically, I know why it’s happening. I know that I have the pesky problem of having trouble getting the blood to flow above my shoulders. I know that the physical fatigue I feel impairs my cognitive abilities to no end. But this doesn’t make it better. For me I could put up with the physical symptoms if I still had a brain that allowed me to escape reality. Imagination is limitless and you can live a thousand lives in a thousand universes if you have your brain.

Mind you I do have the insider knowledge for when it comes to managing cognitive deficits. Slowly I am applying these techniques to my life. It’s strange that I never felt any less of my patients for having to use them, yet I have a little voice in the back of my head telling me that using them myself is admitting defeat. I’m working on that one. It’s a combination of my new mantra, ‘physician heal thyself’, and a big mental slap that says stop being so stupid woman and use your dosette box. So far the combination seems to be working.

My lack of brain does explain my love of America’s Next Top Model and Judge Judy (oh I can’t believe I just admitted that. I must learn to think before I write). That big echoing cavern between my ears has a lot to answer for.

I miss my brain.

Maybe I’ll drop him a letter. Maybe we can kiss and make up and he’ll come back home. Alternatively, I’m happy to move to Majorca and share a jug of margaritas together. I’ll even bring the sunscreen. Call me brain. Call Me.

Michelle :)


  1. I am so with you on this I used to be the go to person to memorize ANYTHING on the spot, directions, phone numbers, ANYTHING. Never had a problem getting my words out. Now I forget my own name at times, seriously has happened signing forms at the doctors and such. Was actually an excellent writer, according to my Literary teacher for I received one of the very rare grades above 100 from her, several times. I was an accomplished song writer and musician. Earned awards for things like that. Now even if I were able to write a song, I'd forget the verse before I could write it down, and even if I wrote it down I'd forget the rhythms of the song! Seriously, this has happened. I have songs I wrote for worship band before I got so sick... now I can only remember how 1 of them went. There is one song we sing in the worship band and I've become sort of the joke (not mean jokes, but funny jokes that don't hurt but cause great bouts of laughter from everyone). The song has 4 words to it... FOUR! It's a short chorus, and every single time Darryl (worship leader) says let's do Our God Reigns, I look over to someone and say "How does that go, what are the words?" I will seriously not have a clue what the first word is even though it's sang 3 times in a row... the funny part... I sing the whole song alone the first couple times through! So I've changed from being a classically trained pianist, a song writer, and memory bank to a slushy brained forgetful and clumsy person! So I totally feel ya on this whole "Labotamy" thing. And I know I didn't spell that right, and I just don't feel like scrolling back up and finding the correct spelling in your

  2. Hey Michelle,

    Thanks for your comment on my blog. I'm glad my latest entry gave you a giggle. I agree with you: you definitely needed it, at least based on this post. I hadn't considered the terrible toll of brain fog. It must be so awful to feel like that. I hope the fog eases up soon -- if at all. I'm thinking of you.


  3. Michelle and Miranda, I can so relate. The other day I was writing about Ellen Degenerous, and I couldn't remember her name, I could see her face, and all I could come up with is Helen the generous! My children have become so accostome to my brain fog, that when I tell them to get the thing on the thing, they can find it before I can come up with the words to help them get there!

  4. Ah yes, the dreaded brain fog! I am a college student (although right now, I'm part time), and it has been a blessing in that, at least my profs are somewhat understanding about the effects of Paul and Ed (POTS and EDS respectively). One in particular has been very understanding, which I would hope so, since I'm taking him for a class on "Death, Dying and Bereavement" for the summer. I am required to write a paper for this class, and I have decided I am going to write about grief and how it relates to debilitating, yet not fatal, illnesses. I hope it will be very cathartic.

    And like you, Michelle, I had much confidence, and might I even say pride, about my intelligence and cognitive ability. Now, like you, it's a struggle to come up with one word answers (I mean, how difficult is it to keep "yes and no" and "right and left" straight? For me, impossible! Don't ever let me give you driving directions) or even my own name, let alone how to spell it (thanks Dad, for the non common spelling of my name!).

    Helen the Generous!! ROTFL!!! Well, she does give out pretty good gifts on her show at times, so I can see it.

  5. I dig ANTM too...I just sat here for like 5 minutes trying to think of the letters so I wouldn't have to spell it out. =)

    PS- brain fog, heart goes out to you and everyone else with Bob who live with this, and of course, I also have the impulse of sending chocolate- cause it looks like that really really stinks. Eek.

    And for the record, I think your writing and wit are sharp, sharp, sharp. Just saying.

  6. I have studied translation. I used to be a "words" person and people admired the way I wrote (in my own language, that is). I used to write short stories and my job included lots of writing and synthesizing information. I was so proud of being intelligent, witty, of having my way with words.

    Then I met CFS. I remember sitting on my veranda, trying to figure out what my mother was saying to me. There was a thick veil between the two of us-I could hear her, but I couldn't focus on what she was saying. I wanted to say something and I couldn't remember my words. I used to confuse words with other words, being unable to recall the equivalent of words in English. I still do-and my memory isn't working that great either.

    I totally agree with Lauren. You're a delight to read! :-)

  7. Miranda - So it's now official. Only the cool kids get Bob.

    Lovable - it did make me giggle, but then again boobs are always hilarious. I'm thinking of buying a fan to attach to my ear and blow out the fog.

    Michele - 'Helen the generous' is hilarious. Should I admit that the first time I read your comment I didn't even click that it was wrong. LOL

  8. Ericka - I love that you have Paul and Eds (not that you have POTS and EDS). Oh and can I ad 'spoon' and 'fork' to the list. I often forget how to spell my name, looks really shifty when you go to sign your credit card slip and can't recall if the 'e' is before or after the 'm'.

    Lauren Lucille - hehehe that sounds so strange,good but strange, I can't wait to say "I saw Lauren Lucille on Broadway last night". Maybe we can do ANTM and chocolate one day. Oh and I'm happy to eat the chocolate for you if you still can't :)

    Elie - Thanks Elie. If you hadn't said I would never have know that English was your second language, though given you're in Greece I probably should have put 2 and 2 together. Stupid CFS and Bob, we need to dump their crappy arses.

  9. I can completely relate. Brain fog was in many ways more upsetting than not being able to walk straight or stand still for 30 seconds because those little grey cells are what I've always relied on in life. Athletic? Musical? Super-dooper practical? Nup, so not happening. So to not be able to string a sentence together or remember that last paragraph was really crap. I've improved a lot but thingymabob and doovywacker and whatshisname are still staple words in my vocab....

    If it makes you feel any better, I think your oxygen deprived brain is still heaps better than most of the others out there ;)

  10. The east coast of Majorca is quieter with the resort of Cala Bona offering small sandy beaches and an accommodation based nightlife, with livelier Cala Millor just five minutes.
    holidays in majorca

  11. Sunburnt Earth - Thanks, and big thanks for using the word 'doovywacker'. Now I just hope I can remember it when I need it,'thingy' is getting old.

    Madeline - I knew Majorca was the way to go :)

  12. well I can't comment appropriately as only managed the first few lines and my brain got lost again. I just wanted to say - I have not marked this as read so will return and wanted to let you know that. I will will read a whole post in its entirety by the end of the weekend and it will be this one.

    See who said I don't have ambition!

  13. I feel your brain pain. I used to be one of the best ER nurses in our department. Now, not only can I not think of medical terms but I can't think of the word for that thing sitting in my driveway... you know, the one with 4 wheels, dammit, it's on the tip of my tongue. Ugh! My parents and husband tell me they don't notice it. Aren't they sweet?

    The other problem is, I can't read and post blogs for long because of my brain fog and my headaches. The two combined are horrible! Sometimes even trying to concentrate on what someone is saying to me is difficult.

  14. Robin - I find reading hard too. Some days I just give up. I tend t read blogs because they are shorter (though not always) but some days I just have to say nope and resign myself to the fact I may never catch up. the headaches can be brutal. 4 yrs from diagnosis and neither my cardio or neuro can suggest anything, just when we get Bob under control your headaches/migraines should improve.

    Go nurses. My sister used to be a NUM in an ER, damn hard job at the best of times. I still contend that only the cool kids get Dys :)

  15. I can totally relate to the brain fog. I have a theory about dysautonomia and hormone imbalance. Suffice it to say I started going through perimenopause at the same time my my auto-immune dysautonomia-like symptoms kicked into high gear. I was 37 then, and I'm in my late 40's now, so I'm looking back at a Lost Decade.

    I needed to look "old" enough for my doctors to take my problems seriously, plus I needed to get mad and change doctors. I finally found a wobbly "fix" after 8 years, it's controversial, I'm self-treating, but at least I got my brain back. I'll try to post something back at my site tonight.

    1. I am having terrible time with brain fog and am also menopausal. Can you tell me if you are better now and if so what you did?

  16. Yes! I still have episodes, but I recover better from them now. I wrote about it at my blog, but here are some updates: I found something called "DIM" that's helped my thyroid enough not to need thyroid supplements any longer.
    Also HRT (hormone replacement therapy) during menopause is controversial but VERY MUCH worth it if you get a good doctor who understands your insistence on bio-identicals (i.e., real estrogen and progesterone, not "progestins" or "analogs."). I also take electrolytes with extra potassium every day to prevent (fingers crossed) the fainting.


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

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