Brainfoggy aimless unscripted rambling - marginally easier than typing?

Brainfoggy aimless unscripted rambling, for a change. Maybe marginally easier than thinking, composing, typing, editing, re-editing a written blogpost. But a whole lot more embarrassing and cringeworthy?

Nobody would guess public speaking was a big part of my profession in teaching, ministry, meetings etc!

Gives a glimpse into how, even on a relatively "good" (???) day, brain fog can make it a challenge to scramble your way from one word/thought to another. The subject matter was hardly complex! I can still spot the odd word in there I didn't intend, e.g. International Space CENTRE instead of "STATION"! But what the heck! M.E. whittles things down to what's important. Who gives a flying ferret about it, anyway, apart from perfectionist "don't say anything wrong" me? Nobody! Get over it! Haha - thank crikey I've never pretended to be an oil painting! Lol!

Still, it's saved my finger joints, wrists etc. a bit of pain. Saved my body, if not my blushes!

PS It's taken all day to upload this, in the end, as Blogger v McAfee seem to have refused to play ball together. Not sure if sound/picture will come out co-ordinated either - they did on my laptop! Perhaps that's a mercy!

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?

Hanging on the telephone? Not any more!

Happy August Bank Holiday to friends, followers and visitors to my blog, both fellow spoonsters and spoonie sympathisers plus any casual passers-by who are very warmly welcome too.


Here in Yorkshire, England, we know the Bank Holiday Weekend's almost upon us. Here are the clues:

Rain - check.

Forecast of more rain - check. 

Cold enough to need a jumper - check.

Heavier rain - check. 

BBQs cancelled - check. 

Summer Music Festival fans bedecked in wellies and rainproofs - check.

Mates who are parents longing for the kids to get back to school - check.

Totally knackered with trying to do extra things in preparation for the rest of the world shutting down for said weekend - oh, sorry that's just me! (And every other PWME who's even well enough to do extra things for a moment in the first place!)

I know from all the years when I worked most Sundays and the occasional Bank Holiday in various jobs and vocations in my pre-M.E. life, how evenings, mealtimes and holidays themselves are often the very times targeted by phone companies to ring your number in the hope of catching someone at home.


So today, I'll pass on some of the best advice on getting rid of unwanted callers I've yet been given. Hope it may save you some spoons in the next few days or in the future!

It may help those of us who find it a difficult task to communicate clearly when put on the back foot, and may also help everyone else in modern society who wants saving from the tyranny of the phone!


In the past, just saying "Sorry, this is a church property..." had the effect of putting the most eager sales rep off their stroke, in my position. But it's not everybody's line of defence!


Since M.E., even ignoring the phone, as I often have to, doesn't always work. Why do certain people still ring the landline, where I can't screen them, instead of my mobile, where I can easily sort the wheat from the chaff? No matter how often I explain the difficulties?

This way is supposed to make those annoying phonecalls from any particular telemarketing company stop, as these tactics below will flip your number off their lists.


The Telephone Preference Service has definitely cut down on junk callers (and junk mail via its sister service) for me. But still some of what I call WEEDOs ("We(e)do not have the callers number to return the call") and WITHYs  (withheld number) manage to get through from time to time.


I used to say things like "Sorry, wrong number..." and put the receiver down asap when a call centre employee pronounced my rather obscure name incorrectly. Once I knew they didn't know me!

That only leads to repeated call-backs. But then I heard from a friend the way to end these energy-sapping intrusions for good.

THREE MAGIC WORDS!

"HOLD ON, PLEASE..."

You say this, put the receiver down off the hook, and don't speak again or let them know you are still there. Yes - DON'T hang up immediately (as I always used to do), but make them wait.

Having to waste time like this, the telemarketer will have to hang up quite quickly themselves, in order to fulfil their own targets.

Your number should be taken off their list to save them making the same time-consuming mistake again! Genius!

When you hear the telemarketer's phone's "beep-beep-beep-beep!" tone showing they have hung up, so can you! Job done with minimum spoons used up, only three little words spoken.

Then there are those ominous silent calls from the machines that probe to make sure someone is actually present on the dialled number, in order to then queue up a real sales rep to ring you later.

As soon as you hear the click that tells you it's one of those automated diallers, the second failsafe trick is to hit the "#" (hash) button on your phone 6 or 7 times before hanging up. That apparently will confuse the machine that dials your number and stop the company having you on the automatic ring-back list.

Simple.

I've now got:

(Salesperson) "Hold on, please..."

(Machine) #######

Written boldly on a card by my landline. When brainfog descends, I know exactly what to say to make them stay away!

Hope this helps you too!

Have a happy holiday. Be gentle with yourselves!

Feeling As Rough As Hetty Pegler's Tump!

 Feeling as rough as Hetty Pegler's Tump, today.

This is when lying flat, birdwatching through the bottom of the conservatory doors, comes into its own as a useful low-energy and non-challenging hobby (plus favourite music for when eyes need closing, of course!)

Funny what things come into your head when you don't need them. Into my bottomless well of trivia, at any rate! 

Funny what vitally necessary words escape you, too, when brain-fog descends. Or what incorrect substitute words come in to masquerade as logical and make your conversation into semi-gibberish. Not that people usually notice, in my case! They're used to my less-than-linear modes of expression, even at the best of times! 

I've always fancied visiting Hetty Pegler's Tump, just on the basis of that fantastic name. First came across it in a book about UK places of historical interest when I was a child.

Why it flashed into my head as a nonsensical metaphor for the way I was feeling today, as a result of the painful, draining effects of M.E., I have no idea! But it got me giggling, and a few friends with me, when I said it!

It's actually a Neolithic long barrow in the beautiful countryside of the Cotswolds in Central England if you haven't come across it! Why would you have, unless you share my obsession for the bizarre or for English history?

Sad to confess, I haven't actually been there in person yet! Shame! English Heritage's loss and mine!

But it made me smile, just recalling the name, on a day when I haven't any spare energy for doing much more than slump and weave those pinwheels and rainbows of sense and serendipity together. See my other blog at Jobiska's Pinwheel with its unfocused smorgasbord of bits and pieces from my imagination and varied interests if you care to! If you fancy a wander and you've got the appetite for a meander through my obsessions and other facets of my life!)

Just for the record, I've no evidence that Hetty Pegler's Tump is actually rough, at all. Any more than Neolithic stone long barrows usually are! I'll leave it to your imagination as I go off for a bit of a rest!

Hope at least the name made you smile today too, whether you're feeling rough or not!

 

View of Hetty Pegler's Tump near Uley in rural  Gloucestershire, UK

 

 

 

 

Stormy skies over Hetty Pegler's Tump

Inside the longbarrow: feeling rough or maybe claustrophobic? Not for long, I hope!