Living With ME: Priorities

a tabby cat stares longingly at a perfectly calm budgie in a cage

A few years ago I met a young woman. She seemed very amiable and we met up a few times after I’d moved to a more northern city. I realised that she was in fact a prat when she made this remark about a person with ME/CFS: “She annoys me because she only makes the effort to do the things she enjoys; if it’s not something fun she just can’t be bothered.” At the time, I was so flabbergasted I could barely speak. Afterwards, I didn’t know how to bring it up again. I’m slightly better at these kinds of discussions now, but that was then. I knew I didn’t want to be friends with her any more but didn’t know how to stop. Luckily for me, a few months later I had a bad mental health crisis, attempted suicide and was hospitalised, and when I didn’t reply to a couple of messages while this was going on she took offence and broke up with me instead.

This story is why I want to talk about priorities and ME/CFS.

Many of you will have come across Christine Miserandino’s ‘Spoon Theory’. It’s not a perfect analogy, but it’s a very good way of giving people an idea how energy works in many chronic illnesses. Briefly, you start each day with a certain number of spoons. Myself, I often can’t tell at the start of a day how much spoons I’ve got; I just estimate and wing it. Then, throughout the day, everything you do costs you spoons. So imagine you start out knowing (for the purposes of simplicity) that you’ve got twenty spoons for that day. Getting out of bed takes one. Brushing your teeth and washing your face each take one, and if you want to have a shower, that’ll take three. Eating breakfast takes another one, and getting dressed costs three. So, you’ve only got as far as getting dressed and you’ve already used nearly half your spoons. How are you going to use the rest? You can borrow some from the next day, but you’ll have to pay interest on that debt.

I feel as though most of you can extrapolate from this description everything you need to know about prioritising with ME/CFS, but I’ll give a few examples to show what I’m talking about.

There is only a certain amount I can do, even on my best days. I’ve previously posted a day-in-the-life description of a good day, a day when I was able to do a good amount of tidying up. But even that day, I had to choose between tidying up, putting my clean washing away, or doing something fun like a craft activity. That time, I chose tidying up. Having a tidier room makes me feel good, and feeling good is a high priority with this illness, where it’s so easy to become depressed and hopeless.

About three months ago, Mum proposed that we institute a system where she does my washing in exchange for me cooking once a fortnight. It didn’t – it still doesn’t – seem like a terribly fair exchange to me. I mean washing is something that has to be done a lot more than once a fortnight even when you’re only doing one person’s! But Mum explained that it wouldn’t be much more impact on her to do mine as well as hers and my sister’s (my sister has severe ME/CFS), and it would be a treat to her not to have to cook sometimes because she has to do it every day. For me, on the other hand, doing my washing has a big impact: I have to carry it downstairs and put it in the machine, then carry it back upstairs when it’s wet and heavy, and hang it up. Lifting things with my arms, and bending down and standing back up, have a significant impact on me, however careful I am. But I love cooking, so to do it even infrequently gives me joy and a sense of achievement, and I’m getting the hang of cooking in a low-impact way. It felt like cheating to choose something I enjoy over something I don’t, but, as I’ve said, enjoyment is essential.

A few weeks ago a friend came out here to see me. We had a wonderful afternoon. We sat in a café by the sea and had tea and cake. She was the one who stood in the queue and carried the tray to the table, while I sat and waited. I could have done it; those things are not beyond me. But if I had, I would have felt more tired and sooner, and the subsequent recovery time would have been longer. So yes, I prioritised the fun over the chores, and that was the right decision.

These are a few small, recent, examples. I hope they give you an idea of the decisions a person with ME/CFS – and any ‘spoonie’ – is constantly having to make. We don’t choose the fun things because we’re lazy and can’t be arsed to do any work. We choose them because they bring us joy and joy is desperately important when it’s in such short supply. We choose them when we are able to because often we have no choice but to choose the crappy, boring thing. Wouldn’t you choose the fun things too when you could, if you were in our position?

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