It’s impossible to talk about chronic illness without mentioning a certain member of the cutlery family, the spoon. The story goes that a sick person was sitting in a cafe with a friend (lucky!) and was trying to explain how she had a finite amount of energy and so had to ration out the tasks for the day. She grabbed all of the spoons from various tables and said each one represented a chunk of energy. They started the day with say, 7 spoons. Each time she did something, a spoon was taken away, so she washed – 6 spoons left, got dressed – 5 spoons left. She made breakfast – 4 spoons left. She goes out to meet the friend – 2 spoons left. (Going out is worth more spoons!). So now there are 2 spoons left, she has to choose between cooking dinner (2 spoons) or cleaning the kitchen (2 spoons), she can’t do both. Of course if she hadn’t met the friend, she could’ve cleaned the kitchen, but she hasn’t been out in X amount of weeks and decided it was worth a dirty kitchen. Spoon theory was born.
It’s a great story. But what I want to know is, if she was in a café, why were there loads of spoons around? In the cafes I’ve been in all you get at your disposal are those infuriating little sachets of sugar and pathetic twiddly plastic sticks. Really, it should be called ‘the twiddly stick theory’. But I guess ‘spoon theory’ is better, and it sounds like String Theory, which is a nice nod to the geeks.
I’m getting to the point where I actually have a few spoons, or plastic twiddly sticks, whichever. Before I only had enough to keep me alive and get me to the bathroom and back to the bed. I thought it was wonderful when I had enough spoons to watch TV for a bit. Now I have enough spoons to go out in the car, walk around the supermarket or the park. What people don’t understand though, is that if I’ve walked around the park, it doesn’t mean I’m suddenly ‘normal’ and can then go home and cook dinner like everyone else. If I walk around the park, that’s it, that’s all my spoons. I can’t then cook dinner, or stop off at the shop on the way home. I’m done.
The closer I get to 0 spoons after an activity, the worse I feel. If get to 0, I physically can’t get myself to the toilet, it’s like someone turned the gravity up and my muscles can’t hold me and they hurt. I can’t even hold a cup of tea. I throw up, I get mentally confused, I feel like the world is spinning around me and isn’t real. I’m never willingly going back to that point, so I have to ration out my spoons and think very carefully about how much energy any given activity uses.
Annoyingly, whoever designed the whole ‘fatigue’ problem, didn’t think to give an inbuilt barometer to how you’re doing. There’s a time delay, you only know how far you’ve gone after you’ve done it when it’s too late. I’ve found the best way around this is to include breaks everywhere. I do something and then rest, if I still feel ok after 10 minutes of doing nothing, I can then try something else. If I start to feel physically unwell (more unwell than when I started…!) then I’m getting close to being out of spoons and I have to stop the exertion immediately.
And I mean immediately. If I’m at home it works well. If I’m in the middle of a shop or in a bar with friends, tough. As much as I would like to take a break on an evening out with friends in a bar, tell them to please turn the music off for 10 minutes while I lay down on some chairs, it’s just not going to happen. This is why I have increasing anxiety about leaving the house. If I’m in a social environment like a bar or cafe, or in a shop, I can’t get breaks and I can’t get myself out of it immediately, in fact, just being there with the noise and movement and general stimulation means I usually have no idea how many spoons I have left. I don’t find out until I’m back in the car, with the seat reclined listening to nothing but the engine. Well, the engine and my partners road rage filled torrent of abuse at passing drivers, which can get rather amusing.
Going out on public transport? I can’t do it. If I can’t find parking, I can’t go. I might realise I’m out of spoons while I’m 10 miles and 2 trains away from home, then what will I do? I’ll physically be able to get myself home, but the pain and suffering won’t be worth it. It’ll knock me out for days, maybe weeks. For all that time I’ll only have enough spoons to stay alive and get to the bathroom.
If you catch a cold virus while you’re out, then that’s it you’re screwed. I caught a cold over 2 weeks ago, and I think I’m ‘just’ starting to get over it. If you get ‘sick on top of sick’ then leaving the house for the foreseeable is as likely as Kim Kardashian winning the Nobel Prize for physics. You can spot a spoonie by the way they avoid touching door handles and scrub themselves with hand sanitiser like some kind of OCD aloe vera addict.
In some ways, being bedbound was easier. I knew my limits, I knew I couldn’t do anything, so I didn’t even try. No one asked me to try. Now I have a few spoons, I feel like I should be doing everything, but I can’t. People see me out and think I’m ok, but I’m not. They don’t see that I go home, lay down on the sofa and then only get back up to crawl into bed. They don’t see the suffering the outing has caused. They also don’t see why I’m so utterly desperate to go out, but filled with fear upon doing so.
I’m so lucky that I have any spoons at all, I feel lucky for them each and every day. But having a finite number brings extra layers of complexity to what is a simple task for everyone else.
Advice for Spoonie Newbies? Get a PhD in Pacing Yourself. Learn to read your body, and learn to say ‘no’ when you can’t do something. It’s hard to let people down, but it’ll be harder on them when you don’t get better because you keep over doing it,
Twiddly Stick Theory Spoon Theory. This is the life of a sick person with ‘fatigue’ and pointless stirring instruments.