Those of us with chronic illnesses are on a very strict budget. I’m not talking about money…but about energy. Have you ever had so little money that every penny you spend feels like you’re spending thousands of pounds? That’s how it feels all the time when you have a chronic illness. We have to budget our energy, and we don’t have a lot of it.
Christine Miserandino wrote The Spoon Theory to explain this budgeting of energy…
Christine says that “the difference between being sick and being healthy is having to make choices and consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without these choices, a gift most people take for granted. Most people start the day with an unlimited amount of possibilities, [with] energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions.”
Christine then explains her theory using spoons as a person’s daily “possibilities”. So for example, as a chronic illness sufferer you might start the day with say 12 spoons. This is your “budget”. When you are healthy, you usually have an unlimited supply of spoons – endless possibilities, but as someone with a chronic illness, we do not have an unlimited amount of spoons – or possibilities – at all. We therefore have to meticulously plan out each day with the small amount of spoons we have. Each task will cost us at least one spoon. Once the spoons are gone you can’t do anything else otherwise you’ll risk flare ups.
Christine uses a morning routine as an example of using up spoons. Showering would cost about two spoons (if you shave your legs – three), getting dressed would cost one. Every little detail needs to be thought out as well – “you can’t simply throw clothes on.” If my legs are really painful, I can’t wear anything tight on them, so jeans are a no-no. Even leggings would irritate them so it would have to be a loose skirt. If my hands are really stiff, or my arms are aching, buttons can be ruled out. And if I have a temperature/sweating, I have to wear a short sleeved top. As my eczema is acting up at the moment I have to moisturise my body before putting anything on. I sometimes don’t have a shower as I don’t have the energy so I just dry shampoo my hair and wash my face.
So after a morning routine, you’d probably only be left with roughly half of your spoons and that’s before you’ve even been out. Are you beginning to understand?
Cooking costs spoons. Ringing a friend costs spoons. Food shopping costs poons. A tiny walk on the beach costs spoons. Some days I have more spoons and some days I have less. But I will crawl through the days with very few spoons, and bounce through the days with an abundance of spoons (not that I ever have an abundance, but hopefully someday!).
Everyday I make choices based on the amount of enery I have and how painful my legs are so I can enjoy my day without feeling too rough.
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. Even though I still push myself sometimes on good days. I don’t like not being able to go out past 3pm, feeling left out as my friends are out partying, shopping or lunching. I don’t like having to think about every single little possibility before I do something. How are my legs feeling today? How exhausted do I feel? How far is the car park from the destination? I really miss the freedom of not having to think and just do!
But, as Christine says, “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time or wasted spoons.” I appreciate every little thing I am able to do. It feels absolutely amazing when I have enough spoons to go out for lunch, or potter around a shop and treat myself to a new dress!! Last weekend for the first time in three months I walked around River Island and tried a couple of things on. Albeit my Mum had to drive me there and drop me right outside, I still felt on top of the world. I bought a little leopard print number too! It’s those tiny things that make life worthwhile and make living with a chronic illness bearable. Maybe next time I’ll be able to venture into the shop next door or walk from the car to River Island 😉
I have not shared the ‘Spoonie Theory’ will all my close friends as yet, but I hope that this Blog will inform them of all that needs to be known. So they may have the understanding of how I can go out for an afternoon coffee and seem normal, yet miss weeks of work.
It is dependant on how many spoons I wake up with.