A shortage of spoons.

I am writing this blog from bed. I am recovering from the utter, utter exhaustion from the last couple of weeks at the church mission and the week leading up to it. Now I’ll be the first to admit that I have not done anywhere near as much as other people have that week, but I am running on empty. I have run out of spoons.

Let me explain that. The spoon analogy is one to show how people with chronic conditions deal, or fail to deal, with everyday life. Spoons are the measure of how much energy you have each day.

Imagine you start the day with 40 spoons. Getting out of bed, washing, shaving and dressing costs 4 spoons. By the time breakfast has been made and eaten, teeth cleaned and I have got things ready to leave the house that is another 4 spoons gone. There are only 32 spoons left for the rest of the day.

Take a Sunday when I am playing percussion in the worship band. There is time setting things up right, then sound check and practice, then playing in the service itself and putting things away afterwards. Then taking into accounts the demands of my autism – socialising is tiring…

…It’s now Thursday, I wrote the above on Tuesday, intending to publish on Wednesday. Fatigue happened.

Spoon theory works like this. You start the day with a number of spoons, say 40. Every activity during the day costs a few spoons. If you are a spoonie when the spoons are gone that’s it. There are no more spoons. Gone. There is no more energy left for anything, even watching TV or listening to the radio becomes too much.

On Tuesday I managed about half an hour of writing this blog. That was all I had the energy to do, I was not being lazy. On Wednesday I had a little more energy, I managed to get a new laptop charger from the shop and visit the bank. There was no energy left for anything else. Today I have already spent two hours writing this blog, most of that on editing the first paragraph below the bold text so it reads in a way I want it to read. My original choice of words was not as poetic as I would have liked, I will not publish ugly prose unless I have a reason for it being ugly. It didn’t read right in my head, so I changed it again and again until it did. Not perfect, but acceptable.

This bout of fatigue started last Wednesday, 12 June, in the middle of our church’s mission week.

This is how the last 8 days have gone:

Wednesday 12th June

I had spent the morning and early afternoon in Dewsbury at a social group for autistic adults and the rest of the afternoon visiting Dad at the home where he is being cared for because of his dementia. In the evening I was in church at the mission meeting where we asked the question, “Has Science Debunked God?” I usually plan my life with a busy day and a quiet day, But the day before my eldest daughter had been up from the Midlands to celebrate youngest daughter’s wedding anniversary. We celebrated in the afternoon with them. Two busy days in a row guarantees the third day will be in spoon debt.

Thursday

I awoke at 3:30am, pain in my arthritic talonavicular joint, one of three joints between the ankle and the foot, had spread so that it filled the foot and could be felt halfway to my knee. This much pain from such a little joint. It was a pyjama day rather than a duvet day. In the evening I cooked a meal for my wife and I. Pain when standing to cook meant I needed help. Everything I did this day was using spoons borrowed from the next day, as Thursday had no spoons of its own. During the day I caught an infection, I tend to catch infections when my energy levels are this low. It’s a vicious circle when you have no energy something happens that requires energy. At the end of the day, arthritic pain was enough to cause tears to pour down my face, but as this was considerably less pain than in the morning it was a good day.

Friday

Despite the pain, I was able to sleep, waking at 10.30am. Another quiet day, doing nothing until meeting my wife at 4.30pm at church. It was the Beer Festival, part of the mission. I ended up taking four members of a group of six we were talking to for a tour of the church, including the first and second floors. I did not start the day with a full set of spoons, I used them and a few from the next day, a good day.

Saturday

A quiet morning. In the evening there was a practice from the worship band at 4pm after which I stayed in the building because I was attending the church mission meeting. The rest I was hoping for between meetings did not happen. People were coming in early so I ended up being part of the welcome of the church. There was a social aspect to the evening too, we were sat around tables in eights, for the pie and peas part of that meeting. Socialising is good, I like socialising, but having autism means that social settings require a lot of energy, a lot of spoons. Today these were spoons I did not have.

Sunday Morning

After another poor night’s sleep, I arrived at church early for the musicians’ sound check and final practice then played percussion during the service. The day started with very few spoons and this along with post-service chat and socialising I was in spoon debt again.

Sunday afternoon, Monday and Tuesday

After phoning my daughter to say I was unable to granddaughter sit on Monday, I slept all Sunday afternoon, which gained me enough energy to watch TV in the evening, though I did nap at times there as well. A pyjama day on Monday gave me a little energy back, so I was able to attend the church life group, small groups that meet in members’ homes. Tuesday was a total recovery day, spent in bed.

I have already mentioned yesterday, and today I feel better, running on the day’s own spoons. When I started writing this on Tuesday I meant this to be about the theory of spoon theory with a few examples from me. What has happened instead is a diary in the life of a spoonie, how overdoing it, using more spoons than you have got, even by a little can have consequences that go on all week.

I am not complaining. I had a great week, but boy was I knackered.