My simplified understanding of how it might feel to live with M.E./(CFS) Myalgic Encephalomyelitis and Chronic Fatigue Immune Dysfunction Syndrome.
Each day without thought I do many things, every day things, nothing special: gardening, shopping, reading, writing alongside going swimming, to the cinema, meal outs and regular daily household chores. I even ride a bicycle sometimes.
Now imagine yourself watching all these people going about their everyday lives, ‘nothing special things’ and being vastly aware that your energy is finite.
Your daily energy allowance is a handful of spoons; let’s use them as tokens of measure. Twelve to be precise.
Put your feet into the shoes of a bright young woman aged 16-20 as her day begins, her morning goes something like this:
Wake up, ‘good, hello kiddo time to get out of bed,’ one spoon used.
Breathe, knees working? Moderate pain but that’s okay, take some medication. It might take the edge off, stop the pain escalating. Get up and go to the loo, another spoon spent.
A shower will make me feel fresh, that’s two more spoons. If I wash and dry my hair that will be another two spoons. (Think I’ll opt for dry shampoo.)
I’m going in to college, I need to get dressed. Another spoon gone.
Make up takes time, valuable time; I can’t go in to college looking wan and lifeless. Too many questions will be asked. An additional spoon is required to make me presentable.
Almost ready to go. Walk down stairs, knees operating at a reasonable level, not too much pain. One more spoon.
Eat breakfast, well prepare it first and while I’m in the kitchen put some lunch in a box for college, a further spoon used. I leave the dishes in the sink.
I want to do my laundry, put last weeks dirty clothes in the machine but that means going back upstairs, rounding up the items, one spoon to go up and one to come back down, should have done this while I was upstairs. Perhaps I can leave it for another day.
I’d love to change my bed linen but that’s a big task and it needs to be on a quite day when I’m good and don’t have much happening. Stripping the bed, one more spoon, remaking the bed with fresh sheets, one further spoon and bringing everything down to the kitchen, an extra spoon. Too expensive today. Perhaps if I ask nicely Mum will sort this?
It’s almost 9.30am, I’m ready to go to college. Time to leave the house. Walk to the train and train journey to the next town, one spoon. Walk to college from the train, up three flights of stairs to the top floor of the science block, carrying a heavy satchel. An extra spoon consumed and my day starts.
I’ve used eight spoons to get here. My day officially begins. Now the hard work commences.
My thanks to: Christine Miserandino
Author of the ‘The Spoon Theory’
http://www.butyoudontlooksick.com/
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