Like anyone with ME/CFS, I have a harder limit on my daily activities than most people do. Not only do I have little capacity at each moment, but exceeding an unknown threshold will result in ‘post-exertional malaise‘ (PEM: a significant worsening of my condition) a couple of days later. To describe these limits on our energy, many people with chronic diseases like to call themselves spoonies. This term refers to energy depletion through the odd metaphor of a spoon supply being used up. I think we can find a better term.
One of the problems I have with the metaphor of spoons is that I’m simply not concerned about using up actual spoons on a daily basis. In fact, I reuse spoons all the time (generally, after washing them). And the real-world penalty for running out of spoons doesn’t seem so onerous.
Another common metaphor is that of an energy envelope. I’m fairly happy with this term, insofar as the envelope is conceived of as dynamically changing throughout the day, thanks to rest, nutrients, medications, and different types of exertion. Sadly, most descriptions, including by medical specialists, miss this ever-shifting aspect of our limits. Another problem with this metaphor is that, even more than with spoons, there’s no built-in penalty for exceeding the boundary of an envelope.
I sometimes think that a balloon metaphor works as a special version of the envelope metaphor, since balloons shift in size. But, once you’ve gone through the border, the balloon is broken forever, whereas recovery from PEM happens, however slowly.
So I’d like to (uselessly) propose a new metaphor to all you spoonies and balloonies: a debit-card account. Rest increases my account’s balance, exertion takes funds out, and even slightly exceeding my balance of energy leads to a hefty fee for insufficient funds – one that requires a disproportionate amount of rest to return to solvency.
To take it a step further: ME/CFS is like several accounts at one bank: one for each kind of physical stress (exercise, digestion, etc.), one for cognitive stress, and yet another for emotional stress. Overextending any one of these accounts will lead to the same penalty: the NSF fee of PEM.
What do you think?