I tend to describe myself as mild/moderate but on your scale I’m mostly 2 with frequent dips to 1 and regular dips to 0. So my scale is finer (more steps) in that range. ETA I think I might have used your scale 4yrs ago when I thought I was burnt out. Back then I was still working (and exercising, firmly convinced it would help). Wish I had more certainty about what really helps.
Spoons, something we can see, and count. I have often joked I wish I had an energy guage on one of my arms. Then I could check on how I'm doing, and how much energy I have in the "bank". I can't always tell how I'm doing, and predicting how I'm going to be is not possible, except in the general sense. As above, after busy times there is a tendency to have less spoons. But, other than that, it gets fuzzy. And, like the comments above, I can feel chipper, and be doing something, and feel dreadful all of a sudden.
Not all my spoons seem to be the same size or made of the same materials & so break or melt more easily than others. Maybe I got a defective batch?
Merged thread Spoon Theory—what it is and how I use it to manage chronic illness—WAPO https://wapo.st/3CSR3ll
You mean is there an underlying testable hypothesis? Did they previously test a fork theory hypothesis and it wasn’t significant?
Quite. They should have worked their way systematically through the cutlery drawer and issued chopsticks to the control group. It’s not as if variable but limited energy is a super-complicated concept which requires cutesiness and cartoons before people can be expected to grasp it.
I agree theory is a daft term if you concentrate on the spoon image, but there is an underlying 'theory' that pwME and pw some other chronic conditions have limited capacity to do stuff, and that is varies from day to day. The spoon just happened to be a convenient item to hand someone used while explaining their limitations to a friend. If they had been sitting in a park instead of a coffee shop, it might have been the leaf theory, or on a beach, the pebble theory. I don't like or use the analogy myself, but I can imagine it being useful particularly in explaining to children why their parent can't do something today that they could do last week. And it can then become a shorthand - 'how many spoons today?', 'sorry, I'm out of spoons' etc.
There's the Unified Cutlery Theory, that expands on the spoon theory. I personally find it very useful. https://demcastusa.com/2020/03/01/unified-cutlery-theory/
I think some people need the cutesy cartoons to illustrate the point, pwchronic illnesses have limited energy that gets used up more quickly. Entertaining while educating can be more effective at times. The demo with spoons reminds me of something I read about parents who decided to demonstrate the monthly budget to their kids. They took out the monthly income in cash and distributed it in piles for each bill, so their children could see where all the money went, and had a better idea of the financial commitments.
I liked the linked article. Thank you. I particularly liked the bit about looking and acting OK, but just one more task causes a collapse. One of my problems with activity is just that, the one more thing to do, and then woops, there's one more thing to do, and one more to do etc. I still look and act OK, but inside I feel light headed and weak, and feel desperate to lie down.
I see it referred to all the time in other groups discussing POTS, EDS, Lyme, etc. The more I feel like we are all in the same
Generally fair, but compared to what the medical profession has put out on the subject, it's basically science so advanced it's indistinguishable from magic. By that alone it truly deserves the label, by sheer shock value of being actually relevant. Also by the same standard, when you have to explain something to people who think hand puppet theater for the Moods is up-to-date "science", using analogies simple enough for a child is pretty much necessary.
Unfortunately, all experimental tests of "put a fork in it" to ward off against BPS fluff have failed, hence the need for a spoon-based system.
I don't think anyone who isn't afflicted understands for more than a minute, no matter what metaphor one uses. I feel fractionated. Using a bunch of spoons, like say 12 of them, is about eleven spoons too many to relate to.
The Educate ME programme used spoon theory in seminars with teachers and pupils. It was a physical exercise with actual spoons using different amounts of spoons and a " spoon allowance" of different spoons for different activities. Being an activity meant it was less abstract. People had to think about the normal tasks everyone takes for granted and allocate spoons - many had run out before the end of a school day ( or lunchtime) . Two spoons had to remain unspent . Pupils commented that they didn't see the point of struggling throughout the day if you couldn't sleep or shower the next day and talked of what to prioritise . Lightbulb moments . My neighbour at the time was an S1 - S2 guidance teacher and used the seminar as part of social education. This was an eye opener for pupils and staff alike. It may not be accurate , or truly representative, but it got over in 15 mins or so what numerous discussions with year heads over 3 years couldn't .
