Those of us with energy limiting illness disability use various metaphors in a somewhat futile attempt to communicate what our life is like. Spoon Theory is popular, though not universally accepted.
In my blog header I edited in an image of a caged bird. That is often what I feel like. A couple of years ago I created a series of tweets using metaphors of what ME is like. The one about having clipped wings seemed to resonate with people:
In my opinion, none of our metaphors about energy budgeting completely nail our experience, though I think they do convey the point that it isn’t so much about fatigue as having limited energy. If you’re healthy this is probably hard to understand, but you can (at least in theory) have ME but not experience ongoing fatigue. If you can keep within your energy envelope you might have other symptoms but the fatigue isn’t the main issue. I have experienced this for phases. You probably can’t do very much at all, but that’s because your energy allowance is small. Money metaphors would be best suited to this idea. People often use the mobile phone battery metaphor too: if you have a phone that no longer holds its charge well you can still use it, just not for very long.
Something I’d like to communicate more effectively is the changing nature of my energy budget. Right now it is quite a bit smaller than my normal. This isn’t mysterious, it follows a sick on Sick health dominos experience at the same time as starting a new medication.
I can think at my normal intelligence but for briefer snatches of time. This is really boring, I can hardly get anything done. My head hurts, I start to feel nauseous and weaker. My body forces me to stop (this is coming on now so that makes it easier to describe).
I don’t really have a grasp of what my energy envelope is right now, so how can I plan to stay inside it?
I think a better metaphor for this could be that my energy is like an invisible electrified bubble around me. It shifts, expanding and contracting but I can’t see this change. I find out the hard way by bumping into its edges and getting electrocuted.
What metaphors or images would you use to describe your experience of ME?
My plan was to write a post about the course Calling Bullshit this month. Unfortunately there was no way I had the cognitive energy for that. You might want to watch the videos yourself before I make an attempt to apply it to ME politics and research. Depending on the size and shape of my electrified bubble this should be my October post!