According to the Spoon Theory , people with an illness such as MS have a set amount of energy each day – spoons – and you use them up as the day goes along. Run out of spoons, run out of energy.
It’s a great analogy – simple to explain and easy for others to understand. In theory.
Try explaining why you feel like the world is ending when outwardly, you seem ab-sooo-looot-ly fine.
Last Friday is a great case in point for me. There was a Renovation/Building show in Birmingham, around a 90 minute drive from my house. An ideal work opportunity, as I’m in the building industry.
I was duly semi-presentable at 7am (!) for The Boss to pick me up. He’d helpfully inserted a mug full of extra-shot-caffeine into the cup holder and I was wide-eyed and bushy-tailed all the way up the motorway.
At the venue I got my name badge and started to wander around the 500 – 500! – stalls. I crumpled after stall 7. I got my walking stick out and The Boss took my arm for the rest of the 493 stalls. It was hot, I was off-balance, gibbering and going slightly bonkers.
I was muttering ‘bi-folds’, ‘ventilation systems’ and ‘coloured concrete’ under my breath. I took every free gift going and ended up with a decent stash of pens, notepads, mints and Gummi Bears. Plus a set of knives, bizarrely.
And then I collapsed. Fair play, it was graceful. My legs simply folded from beneath me. I had had warning signs over the last couple of weeks and dismissed them – ‘ach, it was nothing’.
Now I knew it wasn’t nothing. This was real and it scared the Gummi Bears out of me. I made it back to the car, just. And slept the whole way back to Wales, waking briefly around Monmouth, before slumping back into oblivion.
Back at my house, The Boss deposited me safely through my front door and I made straight for the sofa. I had to find some elusive spoons – there was a gathering from the writing group I attend, that evening in a local pub. I could do this.
Except, I couldn’t.
I emailed everyone my apologies through tears. A Friday night, and I was condemned to my sofa.
I had run out of spoons and believed I could move onto a trusty reserve, the forks. In real life, pre-MS, I had oodles of reserve energy (those pesky forks). They could be called upon at short notice and would pull me through any situation. But not this time. I was all out of them too.
So now I am cutlery-less. No spoons, no forks. As for knives, the closest I get is my free gift (they’re super sharp and quite lovely). My life at the moment consists of work (or similar activity) til 2pm, then Recovery until 10pm, when I go to bed and it all starts again. There’s nothing extra. It’s boring. It’s frightening.
Is this my future?
It’s horrible to be sans cutlery when you really need the drawer to not be only full of skewers and corkscrews. I’m glad you got home safely and made it to the settee in one go. I’m off to Naidex next week and I hope to find a stall selling spoons. I’ll report back.
Let me know!
Yup, all out of spoons and forks. And as for knives…
I’m fed up being fed up on my sofa. Fed up of being so tired. Fed Up.
X
Yep, that’s scary. Hope your weekend brightened up a bit.
I’m fed up too! I’ve managed to slide, at the grand old age of only 29, in to being the company charity case. I’ve ended up with a very cushy 5 days a week working from home. I know I should be delighted that my work have been soooo accommodating and everyone says ‘oh that sounds great, wish I was that lucky’ but really I’d like to planning my next leg up the career ladder and able to attend all the meetings and work trips I used to. Instead I feel I’ve peaked aged 28 and I’m now sliding down that ladder!! Ah well. Yes I’m lucky to have a job! 🙁
Hi there,
I totally understand what you mean – I have a contingency to work at home, should I need it but after being forced to do so by my last job, I know just how much I’d miss things, like you said. My career ladder died back then and I know I’m lucky to work with my best friend, but I still mourn for what could have been …
x
Yep. I thought I’d be over the grieving process but now but it’s almost 2 years since diagnosis- still not over it!
Xx
Totally understand – in retrospect I think I was in deep grief for around two years, then it slowly started to get better. But I’ll never forget those dark times and wouldn’t wish them on anyone 🙁
x
Barbara, eating weetabix out of a mug, is what I do sometimes, but so far I have had spoons, fatigue that never goes away I know so well, any advice I can offer, I don’t think so but I think you are doing really well, warm regards Ian.
Thanks Ian!
This is probably the longest ‘relapse’ I’ve ever had and I just wonder when it’s going to end 🙁
x
That sounds bloody awful. Isn’t it crap the way it can just hit you like a brick wall. Hope it was just a blip and that you’re symptoms have settled a bit over the weekend? I could sleep the clock round literally so I can relate to the exhaustion. As regards the future I guess we just have to keep trying to power through. And we have an hours less sleep to contend with ??
It’s horrible! I spent all of Saturday on the sofa doing nothing more taxing than watching box sets. So I didn’t achieve a lot but there was no other choice 🙁
The hours less sleep was a kicker!
x
Yep, I have been bored and fed up for ten years. Unfortunately for me I was diagnosed with MS when I had my first flare-up which was the first I knew for sure that I had MS, although there was a suspicion after a TIA I had earlier. I was 59 and it was just before we moved to Wales with my husband’s job when it was relocated from Devon. Because of the fatigue and balance problems, which have got so bad I cannot go out on my own, I seem to have spent my time waiting. Waiting for my husband to come home for company (my family are in Yorkshire and obviously my daughter and friends are in Devon). The neighbours here are really good and speak when they see me, but that isn’t often. So the last ten years have, for me, been in limbo. I can’t do very much, just potter, so my days are filled with nothing constructive. How I hate that.
Sometimes I look forward to the fatigue coming so that I can have a nap on the settee which passes some time on.
I know I am lucky in some respects in that I was relatively old when the MS first reared its ugly head, but how I yearn for my old days.
Joan (Wal;es)
Hi there,
I’m really sorry to hear that. If I didn’t have my job (which is completely flexible), I’d be in a pretty similar situation. I don’t do anything when I get home and I think my friends have given up asking me out. So I spend a lot of time, like you, pottering, and watching the world go on outside my window.
It’s almost as if my house is the most important thing to me but also some kind of prison.
Sending you lots of love x
You just wrote about the exact thing I talked about with my therapist for an hour. I’m literally just leaving her office. It’s eerie. I am in the very same place, my new friend, and I’m also not sure how to go about…it…from here. Maybe once I ponder it more (and have a few more sessions with my beloved shrink on said topic) I will have some new ideas to share. ?
That would be fabulous!
I’m still struggling to keep my head above water, MS-wise. I have a lot of time on my hands to think about it and what I can do, but it doesn’t seem to be helping much!
x