One of the better definitions of "Brain Fog" in M.E. I found recently here at www.brainfog.org
They rightly summarise how we spoonies struggle:
brain, n. soft, soggy, vaporous, cloud located in upper cranium between ears.
fog, n. soft, soggy, vaporous, cloud located everywhere else.
brainfogged, adj. when one is so completely foggy of heeed that they make sense to none but their own kind.
Cognitive dysfunction just doesn't cut it as an explanation, does it? If you say you've got 'cognitive dysfunction', people raise an eyebrow in disbelief. If you've got letters after your name and educated to postgraduate level, having made a living with a large element of public speaking, they seem to think you can't be serious that this is a problem?
Mind you, brain fog also tends to be underestimated when you hit middle age. Everybody thinks they know it and suffer from it. They mix up a couple of words or lose their car keys and think this is what you're talking about in relation to M.E. It elicits as many "join the club" comments as "tired all the time" makes people imagine they understand what you're going through. It's why certain people still deliberately inhabiting the underside of stones continue to insist that "chronic fatigue syndrome" is an adequately descriptive nom de plume for myalgic encephalomyelitis.
With true organic M.E., this Brain Fog, which I can rarely type correctly first time without it ending up as "BRIAN fog" (!) that makes it sound too cuddly, often worsens alongside a slump in other symptoms. It's not just some sign of getting older. How we wish!
On days when pain, exhaustion, light intolerance, gastrointestinal issues and nausea etc are worse, brain fog wants its extra pound of flesh out of us, too.
For me, this means words (usually the most obvious nouns, phrases, verbs) go completely AWOL. Sparrows become strawberries. If you're lucky enough to hit on a word at all! Yes, it can be comic. But it sometimes fosters a feeling of frustration and almost panic, as people "helpfully" and usually wrongly, supply the missing word. Conversation becomes a form of cryptic crossword. I usually lose.
Now, on the infrequent occasions I'm well enough to speak to a group, every word has to be written down in case I lose my thread as my energy and voice quickly drains away. Extemporising is a luxury of the past. That's also why phone conversations are such a nightmare. Unprepared, you can't work out who is at the other end. Facts aren't at your fingertips; spoons and mobility are lacking to fetch them from distant cupboards or locked doors in the brain. There's nothing to pin your thoughts around and it can feel like exposed floundering in the dark. It's exhausting and humiliating.
With Brain Fog, sometimes I can't hold an idea, word, number, or phrase in my head long enough to use it. I read a phrase time and time again, losing the sense a moment later, which makes reading anything with a plot more than a little challenging! M.E. bloggers will all know the frustration of trying to remember an idea they wanted to write about, but forgot before they could even make a note of it!
Multiple choice is another minefield or a ladder into a dungeon with missing rungs. People will ask a question, and instead of pausing on a choice on which you can focus and decide, suddenly the first choice is followed with a barrage of alternatives. Meal choices, TV programmes, appointment dates. We can't process information as easily at such times. Even when the Brain Fog is just a bit misty!
Just give us a "yes" or "no" choice, once in a while, and please speak slowly! We aren't being awkward, we're just being chronically sick.
Thanks for this Jobiska. I only have brain fog mildly but the other half has it a lot and I've not always understood the full ramifications. Reading this I realise I can make some amendments which will make his life easier and both of ours less frustrating.
ReplyDeleteI laughed at the postgrad comments - we sometimes have days where it takes the both of us professionals to work out how to function enough to make a meal. But thankfully, those days do pass and then we can relish a tiny spurt of enriched life again.
Bye the way - Happy New Year (and I no longer bother about correcting typos or spellling mistakes as you can see. Our brains, indeed our brians are clever enough to read through it and still undrstand!)
with love