The Spoons Don’t Work….
Over the last year, I have been reading as much as my tired and foggy little brain will let me, not only about the nuts and bolts of ME (I am all too familiar with that!), but about how to communicate the experience to the average chronic-illness-virgin. I am also a chronic pain sufferer and it is similarly difficult to explain to the average person what it is like to be in bad pain that is apparently never going to get better, and has no specific cause.
Whilst friendships with healthy people have withered and fallen like crusty brown leaves to the ground, I have made new and warm connections with the very elderly and the chronically ill. I do not kid myself that this would have been probable (or even desirable) before I became a refugee, fleeing the world of wellness and finding a safe haven with those who are generous with the little they can offer.
Nevertheless there IS a need to explain my deeply baffling illness. There are times I need to defend my corner, and need to know how to articulate the fuzziness of our illness to a ‘healthy’.
I have discovered there is a whole new vocabulary for our diminished energy supplies, the best known being the ‘Spoon Theory’. For me at least I find it frustratingly unhelpful. In brief the idea is that a bunch of spoons, real or imagined, can be used to explain how the energy of a chronically sick person is drained: Eating breakfast: one spoon gone, taking a shower, minus another spoon and so on until spread like jam on the nearest mattress-‘spoonless’.
This similie doesn’t work for the simple reason that on any given day I never know how many spoons I have to start with. Sure, I know if I have slept badly and wake grumpy and in pain, it will likely be a beast of a day, but it is not always so easy to predict. Some days are slow to get started and then I find a surprising burst of energy after my nap. Other times I feel quite good and energised first thing, only to crash at 11am and am forced to retreat to my bed for the duration. The explanation is obvious: someone is nicking my spoons!
There is also the Energy Envelope (the amount of energy I have most days would fit easily into an envelope), Energy Account ( at the bank of un-co-operative where I can never get an accurate statement and someone keeps withdrawing my money), and Marbles (as with the Spoons, how do I know how many marbles I have or use?)…and don’t get me started on losing my marbles which becomes more likely with every day that passes..
Why am I getting so steamed up about a handful of spoons, a virtual bank account and a lot of glass balls? Maybe it is because if I had a more ‘recognised’ long-term illness I would be getting treatment, not similes.
We are told we must have a new way of seeing things, a new attitude to being sick. We must work 24/7 at being ill and in addition we must advocate for ourselves in a world that is baffled by our illness, and is barely funding research to help us LIVE again.
It seems that when the medical profession can’t understand or cure something, they then turn the responsibility back to the patients. It can only be our own fault to have allowed ourselves to become ill with something that defies explanation: our punishment is to be forced to waste our minuscule energies on into ‘managing’ the unmanageable. Doctors telling us to pace more,is like the captain of the Titanic complaining that the ship is only sinking because the deckchairs are poorly arranged.
It is good that many people find the spoons etc helpful, and yes, I know most of these ideas come from patients themselves. Maybe I was just not drawn that way. I don’t believe that life can be codified so readily. Whilst there are activities that always take up a lot of energy, most things vary according to other elements that are completely outside my control: the season, time of day, other infections, my cycle,OTHER PEOPLE, receiving good/bad news, and for me how Mr H is- as there are two of us chronically ill at the elephant house. I would have to be a master statistician to analyse the spoons out of that lot!
ME is no respecter of our plans, schemes and attitudes. To paraphrase the saying ‘ ME goes on regardless, whilst you are busy making plans’
The Spoons Don't work..........
Blog entry posted by hellytheelephant, Apr 24, 2016.
About the Author
Hellytheelephant aka me(!)- first had ME in 1993, and was bedridden/ housebound for 8 years. I improved to around 75% of normal function before deteriorating over a number of years. 3 years ago I crashed again. Now I am mainly under house arrest, and living with chronic pain and POTS in addition to ME. You can find my sometimes serious/sometimes funny blog about living this life,( in which you can also check out my artworks), at: https://thechronicelephant.blogspot.co.uk/