My condition, and the ways in which it affects me, can vary wildly from one day to the next. Sometimes I can predict the change; sometimes I can’t predict it, but can see the reasons with the benefit of hindsight; sometimes the difference seems entirely random.
As I’m sure you can imagine, this makes it difficult to make plans – not just for the big things, like looking for a job, going on holiday, or hosting parties, but for just about every decision of every day. It also makes it very difficult to explain to other people – it’s hard to understand why I can’t sit up today when you saw me sitting up just fine yesterday.
The Spoon Theory, by Christine Miserandino, explains the concept of ‘energy budgeting’ very well. Every activity has a price, such as how much energy it takes, or how much pain it might cause.
The amount of energy it takes to do any given task is not fixed. Making a cup of coffee becomes a more difficult/expensive task after a nasty shoulder dislocation; even more so after dislocating both shoulders. Making that cup of coffee is not so difficult if I’ve dislocated my knee and not my shoulders, but carrying it might then become an issue. If I’m having problems with blood pressure/heart rate, sitting upright to pour the coffee becomes downright dangerous, and that’s assuming I’ve even managed to get to the kitchen in the first place!
I often try to combine tasks – the ‘extra value meal deal’ technique. The cost of filling a hot water bottle at the same time as my coffee mug is not much more than filling the mug alone. This is generally good, but can sometimes backfire. While I’m waiting for the kettle to boil, I’ll do the washing up, empty the dishwasher and wipe the kitchen worktops. By the time I’ve made my coffee and got myself back to the sofa, or have to bed, I’m too exhausted, in too much pain and too nauseous to drink the blasted coffee, and fall asleep with my hot water bottle (good thing I filled it, huh?).
The risk of running out of steam during the day is pretty high, so I have to prioritise. My mind is always filled with ideas, projects, and Cunning Plans, but my body is not so willing. There are lots of medical tasks that force themselves to the top of my list of priorities; there are lots of ‘should’ tasks up there too.
The medical things have to be done, otherwise there is no chance I’ll be well enough to do anything else. The ‘shoulds’ don’t really have to be done, but they are the things that make me feel guilty if I don’t do them. I’m sure you’re familiar with these: most of them are household chores or admin tasks.
I’ve struggled a lot with the shoulds. Rationally, I know that I should spend my energy and time doing the things that I love; the things that benefit my relationships, and which make me feel like me, but I feel so guilty when I choose to go out with a friend or watch a film instead of doing the laundry. Having carers has helped a great deal with this. I delegate the household chores and medical admin tasks to them, and instead spend my precious energy on the things that I enjoy most.
I feel guilty about delegating the boring tasks, but I’d rather feel guilty than feel as though I’m just an empty shell of a person, with all the layers that make me who I am gradually stripped away by this illness. I had started to struggle to define myself, with nothing left except medical curiosities.
I hope you know that you haven’t fallen off my list of priorities, and that I haven’t forgotten you. My husband and I are trying to find more ways of including you, even when things aren’t going so well medically. Perhaps we need a regular ice cream tasting club, a Strictly Come Dancing appreciation (or just watching, without the appreciation) club, or a come and laugh at the cat group. I’m open to suggestions!