M.E. + spoons = the frustration of planning time to relax
When life runs on M.E. time, a 20-hour sleeping binge after a day of activity is neither restful nor relaxing. It is required.
The release of the film The House with a Clock in its walls this month got me thinking about time. To some extent everybody has their life ruled by time. But, as a person who is chronically ill, I wonder if I look at time a bit differently.
My life, for example, is ruled by time. I eat, sleep and breathe time. I monopolise and micromanage time. I must, in order to get anything done. With my condition I have to plan rest times. Planning time to relax. Seems like a contradiction in terms, doesn’t it?
In chronic illness and disability circles we refer to this as ‘The Spoon Theory’. It is a metaphor to explain the distribution of energy using spoons. A person has a certain number of spoons per day and when given away, by the means of expending energy, they can only be replaced by resting. Need to shower? One spoon. Run to the shop next door? That’ll be a spoon. Go to work for a few hours? Oh that’ll cost you at least three.
You get the idea. Life goes on like this. I marvel at my friends who have no need to think of spoons and count them every minute of every day. You can go to work then go to the gym then go out for drinks? Without a nap or anything? Truly, you are a marvel.
I have to remind myself not everybody lives like I do. Having to prioritise. If I go to work and then have friends over, I need at least a three-hour nap beforehand. If I go to the supermarket after work, that means I can’t do anything for the rest of the day. If I go out for the night or have a long day of activity, I have to be prepared for a twenty-hour sleeping binge (not even exaggerating).
Despite outwards appearances it’s not particularly restful or relaxing. There have been times where my mother or partner have checked I’m still breathing. Frustratingly, now that I’m working part-time I have to devote my precious days off to boring, adulty things like errands and cleaning. And they cost spoons. In an ideal world I’d only relinquish my spoons for fun activities. Actually, in an ideal world I’d be perfectly healthy.
I’m not lazy by nature; I like getting things done and achieving. I’m a planner. I like plans. I love lists and time tables and organising (I’m so much fun at parties!). So… it frustrates me when I can’t do things. I’m ambitious, so it hurts more than I can explain not be able to fulfil ambitions. I want to live abroad, to travel more, or to at least live outside this tiny village.
Some days I feel like I’m drowning in guilt for having to take yet another day of recovery time, guilt for cancelling on people, for not doing housework or writing. The list goes on. I spent most of my teenage years wanting to be invited to cool parties… and now I’m invited to those parties and I still can’t go!
My biggest guilt? It’s probably that, sometimes, I still don’t believe I have a ‘real’ illness. I even asked my GP, after my hospital-related panic attack, if she believed M.E was real. She said yes. No hesitation or anything. Just… yes. That made me feel a whole lot better and I play that moment over and over again in my head when I feel particularly bad.
My work is very understanding and I have unbelievably supportive family and friends. Just sometimes, it gets on top of you. Speaking with other Spoonies, I know I’m not the only one. Being known as a ‘flake’ or ‘Mrs Cancel’ seems to be a common theme. And then there’s the overall terror that people might stop inviting you to things. At least we are all here for each other.