This article is about my lived experience of (mostly failing) at rest and pacing. I have been disabled with long Covid for nearly five years. I got Covid in the first wave in early 2020. Before the lockdowns, before the vaccines, before anyone knew what long Covid was, I got long Covid because I got Covid again.
I didn’t know not to push through my fatigue. So, that’s what I did. I pushed through to disability. I’m telling you this so you don’t make the same mistakes I did.
Long Covid: rest and pacing
If you have Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or long Covid, have had either those things for many years, you’ll have been on one of these courses that they send you on, where they teach you about rest, and spoon theory. And they tell you to make a gratitude diary. They try to force cognitive behavioural therapy (CBT) on you to make you feel positive about the fact that you’ve got a terrible disability for which there is no treatment.
Rest is incredibly important when you have long Covid. In an ideal world, it’s best to do activities for no longer than about 20 minutes at a time and then slot in a period of rest. And the same goes for pacing, in an ideal world. You break up all your activities across a week to make sure that your week is manageable.
For example, I often do this: sometimes I have to do a sink wash instead of a shower, and I’ll only have enough energy to do a top half wash or a bottom half wash. I’ll go and have a rest in between.
So, back to these courses; they encourage you to rest, and they encourage you to pace. But what happens when normal life gets in the way? They really don’t account for that. And I think it’s important to be kind to yourself when life gets in the way.
A real-life scenario: why pacing and long Covid don’t always mix
Speaking for myself, I have a number of things that I have to do every day as part of running a household. I’m responsible for laundry. I’m responsible for cooking. I’m responsible for walking our two dogs.
All of these things I try to do in a way that’s as helpful to rest and pacing as possible, but I fail all the time. A large part of the reason why I fail is because I have neurological symptoms with my long Covid.
That means I forget to do things. I forget to eat breakfast. I forget to wash my hair. I forget to order my prescriptions from the Boots app, which means that, unfortunately, I end up having to do things at the last minute, which means I end up having to overdo it on certain days.
And that’s life, I’m afraid. My wife is just back from work. My daughter doesn’t feel well. Dinner needs cooking, and a takeaway needs foresight. Sometimes life piles up in such a way as to make rest and pacing go out of the window.
Missing out on a social life
I have a big problem with the language around rest and pacing. If you abide by it religiously, as many do, you miss out on many things that improve your emotional wellbeing.
The gold standard orthodoxy on rest and pacing also runs contrary to the Social Model of Disability. According to Scope, “The model says that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things.” That means that social occasions should exist that make space for you. Rest and pacing keep you in a tiny little box, watching the rest of the world happen around you.
Unfortunately, normal life doesn’t really help with rest and pacing and nothing prepares you for the guilt trip that some people will try to put on you if you’re not able to manage rest and pacing. And if you talk about the things that you’re going through as a person with long Covid, that you subsequently end up having to go to bed for days, my experience is that then you get given a great deal of grief.
If you think you have long Covid, don’t try to push through it if you have the option to build in periods of extreme rest to your life. That was my downfall.
And finally, writing this article has cost me a lot of energy, so I hope it proves to have been worth it. It has definitely helped my emotional wellbeing. Lots of things that take up energy do.
