Energy budgeting — disability and autism

This has not been a good week for energy. Two days of doing nothing has been my reward for being busy.

Even in my usual routine I get tired. It goes like this:

  • A physical disability causes pain, anything involving walking or standing on crutches gives pain and pain makes me tired.
  • I have type two diabetes. Any sustained exercise makes me tired, and if I don’t eat enough I get dizzy, blurred vision and acute fatigue known as hypoglycemia.
  • Too much socialising. I can socialise, I prefer one on two people to crowds but even then socialising is draining. That’s autism for you.
  • Then there’s meltdowns, which are not anger but an autistic reaction to over-stimulation, the after efects can lead to fatigue for over a week.
A graphic to help explain spoon theory. Each task has a number of spoons attached to it: Get out of bed,1 spoon. Have a shower, 2 spoons. Go to work, 5 spoons. Cook dinner 3 spoons.

This blog mentions spoon theory.I suggest you acquaint yourselves with it here. If you are already aware of spoon theory, read on.

I have many reasons to be tired, I have become a spoonie. Imagine you have a drawer full of spoons, every task, even that of getting out of bed costs a number of spoons, once all your spoons are gone that’s it, there are none left for anything else,all your mental and physical energy is gone. Last week was one of those weeks when I used up not only all the day’s spoons, but borrowed them from other days too. Multitasking is not my thing, as if you are doing two tasks at once worth two spoons each the total is at least five spoons used, keeping track of where you are on each task takes energy too.

Not that I’m advocating doing nothing. So what could possibly drain a retired man? There is so much scope for recuperation how could I burn out?

It started on July 17th. “Dig it” was an activity day at church, we had our granddaughter* for the weekend and the morning was about finding mini beasts such as snails, worms and beetles. We ended the day by checking the wildlife pond in Greenhead Park as I knew there were damselflies and dragonflies there.

An almost five year old is an energy sapping experience but I had a plan. Cycling replenishes my mental energy even if it depletes my physical strength so on Monday 19th, called freedom day by some or super-spreader Monday by others as it was the day restrictions due to Covid-19 were lifted in England. The plan was to pick up the e-bike I had ordered in the previous week. Then on the first ride apart from riding it home I crashed, surfed down the road surface on my back and ended up in A&E (Thar’s ER for American readers). The bike was on top of me and only had a few minor scratches.

After a week of pain, Wednesday was particularly bad, I was back on the bike the following Monday. I’m fit enough to recover well. Sleep was bad, and at the wrong time, and productivity as far as blog writing was concerned was zero but autism wise it was a good week, no sign of any melt downs or other negative effects. By Friday I was able to take a short walk outside. Then came the weekend from hell. Well not really from hell, I used up several day’s spoons.

Saturday 24th July: Our daughter came round,and we went together to our other daughter’s house. A gentle level of socialising,I can cope with that.
Sunday 25th: Church in the morning and then our granddaughter’s 5th birthday party. 20 children, each of which was louder than the rest of the children there,or so it seemed. Outcome happy but drained.
Monday and Tuesday 26th and 27th: We had our granddaughter stay over again. Tuesday we visited Leeds for the Jurassic Trail 2, animatronic dinosaurs at locations all over the city centre, in shopping malls, markets and pedestrianised roads. Happy but really worn out.
Wednesday and Thursday 28th and 29th: Worn out days, I had borrowed spoons from these days,and needed the energy back.I did not manage to do anything because of the tiredness and brain fog except for watching the Olympic BMX racing on both nights, at the cost of a lot of day sleeping.
Friday 30th: For the first time in 12 days I had the energy to write a blog post,the one published last Monday. It’s just as well I have now no scheduled posts to fall back on.

There are other days I will be doing stuff in the next couple of months. I hope to cope better than this. My spoon management is not perfect.


*People are named by relationship only as I have not got permission to give their details online, nor do I wish to.

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