Brain Fog: Slow Down and Simplify, Please!

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.

"Spooney!" said the clerk...what the Dickens? M.E. Brain Fog strikes again!

Some days I can't concentrate to read. You've probably found the same problem? I think it's a very common experience for people with M.E.

One day on Twitter, I couldn't work out, after looking at it several times, whether what I was seeing was my own Twitter name or somebody else's with very similar letters. With M.E.-related cognitive dysfunction and brain fog, inputted info sometimes gets mangled on the way in - and out!

The times I have to check and recheck what I write would have to be seen to be believed by anybody not sharing our enforced 'Spoonie'-dom! This often brings laughter. On really bad days, it brings tears of sheer frustration through exhaustion! Even after endless checks, some real "howler" mistakes slip through. As a grammar Nazi by natural inclination, few things are more galling to me than seeing errors I've made in print just through M.E., when before, I could have spotted them a mile off! The silver lining here is the empathy this frustration can give us for friends with dyslexia who deal heroically with word blindness all day, every day. Not just when brain fog descends.

Reading and writing are some of my principle joys in life. So naturally, I notice the changes to perception and information processing M.E. has brought.

Over Christmas, I was rereading Charles Dickens' "Great Expectations" on Kindle. I love Kindle. Light as a feather to lift and hold. Adjustable text size for aching eyes. Adjustable brightness for light-sensitivity. No cumbersome pages springing back or weighty tomes hurting your fragile wrists. Much as I love "real" books, with M.E. they present untold problems, though I hate to admit it as a book lover.

It shows how much M.E. changes your life when your mind immediately reads a capital "ME" as "M.E." in most contexts. I was getting tired and struggling. I was rereading a sentence, a paragraph, a short phrase time and again just to take in the meaning and follow the plot!

I was reading Chapter 20, where the hero Pip travels to London to be schooled to become a "gentleman" and fulfil the eponymous 'great expectations' predicted for him. In the lawyer Jaggers' office, Pip witnesses a heated exchange between Jaggers and a man called Mike.

I read the line:

"You infernal scoundrel, how dare you tell ME that?"

Of course, the capital letters "ME" at first jumped out at me as a reference to our illness! This wasn't helped when over the (virtual) page, came the line:

"Spooney!" said the clerk, in a low voice, giving him a stir with his elbow.

I don't recall associating either the capital letters ME or the word 'spooney' with a devastating neurological disease last time I enjoyed a Dickens novel! Really need to get out more, don't I? If only, eh?

Crazy little things that "crash" you!

Isn't it crazy what things can crash you with M.E.?

It's often the so-called "little" things that catch you out.


As you'll maybe have read in my last post, I've had this chest/throat bug that's being going round.


Felt a bit of improvement in my throat by yesterday.
So had a bit of a sing to my iPod.
Not much problem.


As I've not been well enough to use up all my tiny gram of spare energy this last few weeks on dressing, I got dressed. 


The aquarium hasn't been properly cleaned out for the same period.


With support from my Mum I gave the fish a good scrub out and changed the filter.


For a while I felt great. Well, great-er. Well, relatively great. lol.


Aquarium cleaned (with help carrying bucket etc)
Dressed and up and eating a bit more.
Singing.
It's not running a marathon or working a 9-5 job, now, is it?


By last night and this morning, it's all kicked in.


I can hardly lift my hands and arms without them trembling and feeling sick. My wrist and hips actually were making audible "crack" sounds last evening. Yes, audible. To an outside ear, so it's not "all in the mind". (Hahahahah, as if!)


My voice is weaker again. Hurts my chest muscles to speak. Half of what I try to say I'm losing the words. Typing this, I have to keep re-typing and checking the mistakes. The floor is unsteady when I get up, when I stand. Everything is like mountaineering today. Thank the Lord for spellcheck and leisure to do it all inch by inch. Cognitive treacle. Muscles scrambled with post-exertion malaise.


Up this morning, but will really have to have a couple of hours lie down this afternoon to try to recover.


Some days you get sick of the idiots who still think M.E. would disappear if you just thought positive and DID more. I DO do more. I'm never anything but positive. Afterwards it can leave me as weak as a kitten, and as addled as someone with serious brain, nerve and muscle disfunction, twice my age.


That's it for now. All the joined-up thinking I can manage for now. Tomorrow's another day. Rejoice in every second. Don't let 'em get you down!

M.E. and my brain-fog!

Today's typical of a "better" M.E. day, i.e when I can actually slump with the laptop. Or make breakfast with more than tipping a box and lifting a milk carton. Or think and talk and stand without feeling later I've run a marathon!

Like the day last week I put cumin instead of cinnamon on my porage oats. (That could be the menopausal synapses, of course, too!)



Like yesterday when I saw I had written three different months in my Diabetic food log. Not in three months. In three days, like Mon 25th September, Tues 26th February, Wed 27th October. When I felt well enough to Facebook yesterday, I had to delete a post on the wall of an old friend wishing her happy birthday for the 29th. I remembered her birthday was Oct NOT Sept 29th. It wasn't Facebook who had failed to remind me of the date! Lucky my mate doesn't go on FB very often.

Worse today. In the strain of doing several things at once, my brainfog hammered me.

Having decided to start this blog for M.E. only, I tried to copy and paste an M.E. related post from my other blog onto here.

You've guessed. I managed not to copy it, but delete it.

It was all about how it's still acceptable to make M.E.-knocking jibes on "Benedorm" and how the media's full of the conviction that everybody's TATT (Tired All The Time) these days. What? Like everybody with a cough has T.B.?

It took a day to put that post together. I'd already managed to get a couple of referrals from Twitter to read it, according to the stats.

Now, M.E.-addled, I can't remember the bones of yesterday's post enough to recreate it here. 
This is life and if that's the worst that happens to frustrate me today, I'm blessed indeed.
Watch this space.
I DID see a Great Spotted Woodpecker, juv female on one of my garden feeders (another separate blog calls, does it??) which is excitement enough till I've had a lie down!