Chronic illness and disability often come with the need to budget physical and emotional energy. Some people use spoons.
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Mum: “You aren’t always sensible you know.”
Me: “Name six occasions.”
Mum: “The time you climbed all five storeys of Loche chateau keep.”
Me: “That was 26 years ago.”
Mum: “It wasn’t a good idea.”
Me: “You’re going to bring up the time I climbed Richmond castle when I couldn’t walk unaided aren’t you?”
Mum: “Well that wasn’t sensible either.”
The chronic illness and disability budget
Chronic illness and disability often come with the need to budget physical and emotional energy. As neatly outlined in Christine Miserandino’s Spoon Theory, people with conditions such as myalgic encephalomyelitis, multiple sclerosis, Ehlers-Danlos syndrome and a whole host of others, have a limited amount of energy to spend on day to day life.
Activities many able-bodied people take for granted – showering or getting dressed – eat into that budget, so every single thing we do gets weighed up for cost/benefit and paced. It’s the only viable, and sensible, way to live.
Spoon theory and many of the articles around it cover the problems that arise when people around us don’t understand how our energy budgets work – the good old question of “how come you can’t do this if you were able to do that?”
Why are you doing that: Don’t you have a chronic illness AND disability
What I want to talk about is something less explored – the awkward conversations we have, not when we can’t do something, but when we decide we can. Especially if it is something other people don’t think is a good use of energy.
I’ve been ill since 1990. There have been good years and bad years. The glorious sunlit seas of 2010 when I could sail quite regularly, to the tooth-grinding annoyance of early 2018 when a giant invisible vampire sucked my energy dry. One thing is consistent though – every single day, whether well enough to work full time, or landing in bed because I had a shower, a bespoke budget is calculated.
Much of the calculation is straightforward. Does the benefit gained from this activity outweigh the cost? If so, it gets ranked by priority, crucial stuff pushing out the nice but non-essential. When I needed to support myself, work topped the list. When there was oomph to spare it went into friends and hobbies because no one lies on their deathbed regretting the housework they didn’t do. The sneered at the phenomenon of ready-meals tipped the budget in favor of independent living.
Just as overspending on a credit card weekly is not a great long-term plan for financial health, so regularly overspending on physical energy will leave you broke and broken. Nonetheless, there are times when I do the cost/benefit calculation on an activity, note the probable physical cost heading my way like a freight train without brakes… and do it anyway.
I don’t understand your chronic illness and disability – you should be in bed!
That’s where the awkward conversations occur. Frequently people who love and care for us, and who understandably don’t want to see the collapsed heap on the sofa the next day, can’t understand why anyone would stand in the path of that freight train to achieve something seemingly trivial. It’s just not sensible.
It’s the medical equivalent of spending your savings on a giant fiberglass dinosaur for the garden. It’s not actively irresponsible – you’ve got the money right now – but do it, and you’ll be eating bread and butter for the next month. That’s ok, you know ten different recipes to make bread and butter palatable. And you really, in the truest depths of your heart, need to own that replica diplodocus. But as far as your parents are concerned, you’ve just blown the price of a car to put a diplodocus among the delphiniums and… wouldn’t it be better to be sensible?
Well, no. Sometimes it damn well wouldn’t. Sometimes, we all need our diplodocus. That’s doubly true for people who spend 95% of their lives being sensible because they have no choice. If you can climb a castle tower, or head to the cinema anytime you fancy it, taking a raincheck on one event isn’t a big deal. When every single day, for decades, absolutely everything, right down to your hairstyle and how often you have a shower, is a calculation, then it is. When, on the vast majority of days you are sensible, even if it means foregoing hobbies or friends or dating, because you physically can’t survive any other way, then the times you look at that calculation and say, ok, possibly bad idea, but I’m having that damn dinosaur, those times matter. They are precious.
I haven’t climbed a good big tower since 2012 when I defied maternal opinion to tackle Sacre Coeur in Paris. My condition has progressed and most times now I look at high towers, deep caves, long flights, loud movies and decide they are just not worth the pain. It’s not that I’ve grown up or evolved more common sense. It’s just that after nearly 30 years, the pain and exhaustion are starting to win. It makes me sad. It makes me less me. Nonetheless, when I spot a new diplodocus on the horizon, I have no intention whatsoever of being sensible.
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