The aim of this post is to try and explain what it’s like living with ME/CFS. I can’t quite remember where the idea of spoons as a unit of energy came from, I think it might have been from my friend Gem, so I’m blaming/crediting them.
So why are spoons a great way to measure units of energy, human energy or I guess effort. Because spoons are a physical thing and that makes things better to visualise.
One spoon is equal to one human unit of energy, a unit of energy can be used for anything, work, shopping or even watching TV.
Living with ME/CFS only gives me a set amount of spoons compared to a normal person (if such a thing exists). So in my case I like to think I have about 10 spoons I can use a day, another person might have 20 spoons.
In a normal day I use about 6 spoons of energy for work leaving me with 4 left over for the rest of day. Some days I need a spoon for waking up and getting into a work mood. Shopping and cooking take another 2 spoons. Already I’m at 9 out of 10 spoons for the day and I’ve not really done anything out of the ordinary. Let’s say I want to go out and socialise that’s another 3 spoons which is a problem, I’m now at 12 our of 10 spoons borrowing 2 spoons from somewhere. Except there’s no concept of borrowing spoons going over that mythical 10 spoon limit is where the problems start. I’m now in an energy debt.
How do I recover that debt? On a good day it’s fine I can write the 2 spoon debt off and carry on. On a bad day I’ll pay for that and my default 10 daily spoon allowance is down to 8. This can lead into a spiral and ultimately a crash. A crash for me is where I become exhausted, I usually lay on the sofa for up to half a day just watching TV and trying to not fall asleep. Days like these I just want to cry. It’s so hard to do anything, my body aches and my brain is like sludge. I start stuttering as words become incredibly hard to form. People don’t see this though, only my wife and family. So it can’t be that bad right? It’s horrible.
My usage of spoons is incredibly important and the best way I can describe to people what it’s like to live with ME/CFS. I’m currently recovering from recovering from COVID. What do I mean by that? My body doesn’t work normally, all the energy I spent recovering has to come from somewhere and I now get to spend the next few weeks recovering my spoons back from that. It sucks.
Hopefully this helps give an idea of what it’s like to live with ME/CFS. Either way it was cathartic to write.