Metaphors in ME

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.

Bird in cage

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:

IMG_2811

Also

IMG_2810

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.

Woman inside a bubble

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!

See callingbullshit.org/videos

 

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3 thoughts on “Metaphors in ME

  1. my fav metaphore for exertion is that exertion for us is like eating space cookies.
    cookies are good looking and they taste good. (I love moving my body, you know, when I have energy, and actually DO stuff, move around, and generally it looks like a good idea, then I get a boost from the sugar of the cookies, and loving the taste, I am tempted to eat more. BUT the experience is with SPACE cookies, (if you read this and don’t know what is space cookies, it means there is marijuana in it) and that means getting greedy can be very dangerous. my flatmates explained they had a collective badtrip experience with space cookies that’s because it is very hard to know what will be the effect of even a few crumbs, because you don’t get direct feedback from the body. this is my main problem with the handling of my earthship (aka my body) : exactly like you said with the electrified bubble ! I really like the metaphore of the electrified bubble, very efficient, and it makes it unnecessary to speak about drug use ;-P
    But I like my metaphore because it highlights the fact that yes! I would love to move more and yes moving feels good, my body seems to “enjoy the moment” until I “get the buzz”. and if I overdosed, there is nothing to do to feel good other than waiting for it the badtrip to ease. and that is no fun ! and the body is obviously not happy. I guess a real bad trip experience is pretty close to the experience of what is identified as P.E.M. ? mmmh cookies are so yummy x-) x-) 😛 😉
    ps : nowadays, I get direct feedback, because my heart seems to be in bad shape :-/ the positive side of that is that I don’t get P.E.M. anymore. never ever. no I am no tempted to eat real space cookies though ;-P

    Liked by 1 person

    • Ha! I like the space cookies metaphor. The experience of delay is usually hard to get across.

      When my POTS isn’t under control I get immediate fatigue from exertion and that feels like a more ‘normal’ sickness experience. I also then don’t tend to get the ME delay, POTS is almost like a smaller bubble in the bubble that prevents me hitting the electrified ME bubble. Obviously that doesn’t make POTS a good thing and I’m pleased to have fewer POTS symptoms. Right now I think the ME bubble is the smaller one.

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