I was going to call this post something serious like :
” Managing Post Exertional Fatigue : Life Gets In The Way ”
But as everyone with CFS and ME will know what I mean (and I have no new answers), I decided to go with a more fun title.
It has been a while since my last post, and improvement has been very slight. And very slow.
That endless dreaded post-exertion fatigue.
Can anyone tell me how you manage this thing ?
No – I thought not.
Life just gets in the way, doesn’t it . . ?
I managed to go to Braehead shopping centre one evening a few weeks ago. It was a Wednesday.
And bought a pair of shoes which were badly needed.
To celebrate the successful buying of the shoes I had a coffee in Costa Coffee and some mini-muffins. Ok, a whole bag of 6 which are meant for sharing. Well, they were tiny . . . and I felt I deserved them.
Because buying shoes I find very hard work.
All that bending and trying on. Assuming you can even find your size in the 1st place. eg. In places like M & S where all stock is out on display. But the sizes are often mixed up. Or the standard size range of shoes have had some wide-fitting ones thrown in.
And you get to the stage where your eyes are so blurred you can hardly see the sizes. Or be able to distinguish dark blue from black.
And bending forward to try on just one more shoe makes you so dizzy that you may just topple over onto the floor.
All very difficult . . .
After the coffee I went back to the car and drove over to the Sainsburys, also within the Braehead complex. Just two car parks away.
This was maybe pushing it, but I thought I was revived enough at the time. But with hindsight it was probably a mistake.
(Hindsight : what a great & useless thing this is.)
In Sainsburys I bought 3 items.
A birthday card, a quiche and a box of wine for the fridge.
Once back in the car, and things put in the boot, I knew I had overdone it. That feeling of all strength draining away and aches and pains.
And I still had to drive home.
Oh dear . . .
But I have been there many times before over the years.
And had my “emergency cereal bar” and some water in the car.
After eating the cereal bar, gulping down most of the water, and resting for a while – I felt able to drive home.
Only 15 or 20 minutes, but an unpleasant journey.
The physical weakness and aching muscles (neck, shoulders, upper back, right arm) made it a challenge. Then add in the “brain fog” which seemed to diminish my ability to concentrate, focus, judge distances, stay alert, etc. And of course the always-looming headache kicked in within seconds of hitting the motorway. I guess triggered by the effort it was taking to concentrate thru all these symptoms.
What a contrast to the journey out – just 2 hours earlier. A nice, easy, relaxed drive playing music in the car.
Once home in the driveway I phoned hubby with my mobile to come out and carry in the bags (just 3) from the car. It was all I could manage just to carry my handbag in.
He had 2 friends in who had come over to watch the football (the Scotland v England match).
I was glad they were still in, as had wanted to say hello. They are nice guys and good company, have known them a long time.
But almost every time they have been at our house over the last year I have been upstairs in bed. And not well enough to come down.
This time I was actually up – but knackered !
However, not to be beaten, I went straight to the kitchen. Followed hot at my heels by the visiting pussycat who had been hovering outside. (He was probably waiting on the football ending, as he doesn’t like the TV.)
Had more water and panadol extras – and got hubby to open the wine box for me and pour me a big glass. With ice, as still warm.
Then emerged into the living room to say hello and just sort of melted into a comfy chair.
The effect of the water, the painkillers working, the wine, the comfy chair, and the nice company all seemed to work wonders after a while.
And I stayed and chatted for an hour or more. Until the guys went home. Even had a 2nd glass of wine as I was now relaxed.
After they left I eat most of the quiche (just cold & sliced) as badly needed food. And this was easy, needing no preparation. Not the healthiest of dinners I know. But much better than no dinner at all.
With more hindsight (that word again !), I should maybe have just said hello, explained I was tired and only chatted for 10 mins, not had any wine, eaten food earlier, and gone to bed earlier with a cup of tea.
But I didn’t do that.
The next day the real “heavyweight exhaustion” kicked in big time. Body powerless and a lot of muscle pain. Even my legs were sore.
This kept me in bed for most of the next 3 days – the Thurs, Fri and part of Sat. And had to cancel two sets of plans for the Friday.
Frustrating ?
Yes. Soul destroying at times . . .
This is just part of everyday life with CFS or ME and post-exertional fatigue.
(You can see that “fatigue” is such a lame name for it though ? Totally inadequate.)
Its funny, I can imagine if either of the guys’ wives asked them
“Oh, how was Anne ?” – they would probably have said something like :
She seemed fine
or
She was in good form, chatting away
or even
She had a big glass of wine & gave this bloody cat that appeared from nowhere a saucer of water – while we were sitting gasping for a 2nd cup of coffee !
(Sorry about that . . . )
Well I haven’t worn the shoes yet.
But, overall it was still a good day.
Your Jaw Never Gets Tired 