Can we talk about pacing?
One thing I hear often from various medical people is: pace yourself.
Ok, great. When I ask what this looks like in actuality, it’s something along the lines of working out what your body can handle and doing less than that repeatedly.
I home educate 3 primary age children, 2 of whom come with added extras. There is no possible way I can work out a base line to work from. So how on earth can I pace in an environment that is in no way stable?
I’ve read a few recovery stories and I’m often pretty jealous of the way the writer establishes a baseline and refuses to go over it. You know, the kind where they can walk for 10 mins a day and they stick with that until they add another minute, and then they hold there until they can add another etc. That’s great, and I’m sure it works really well but for a lot of us, that’s not an option.
I have, on occasion, had the luxury of finding out where my baseline is – the level of activity where I feel almost well – and it’s depressingly low. I spent one beautiful birthday weekend snuggled up on the sofa with a pile of books while my husband brought me cups of tea at regular intervals. I’d been ill for several weeks and he took a couple of days off work just to see to the kiddies and leave me be. By the time Monday came round, I felt amazing! Still ill, but better than I had been for months and months.
When I took stock of that baseline though, I hadn’t cooked, hadn’t taught the molies, hadn’t done any housework, hadn’t read the news, hadn’t phoned anyone, hadn’t left the house except to sit in the garden and drink the first cuppa of the day. That is a fantastical baseline…totally unworkable.
I’ve also heard different advice: plan out your day, then cut the list in half. Or only do 50% of what you think you can. Therein lies a different sort of problem…planning. I’m not a planner.
This is the school work section of our house…
This is the Menu plan that hasn’t been changed in 5 weeks.
So if you don’t plan, how can you work out what’s half of the amount you think yourself capable of? And if your life isn’t predictable, how can you plan?
I’m rubbish at this – better than I was, but still rubbish. I quite often think I’m ok, we all set off to town and within 5 minutes of parking up, I’m telling my husband we need to go home. Or, I’m ok, I walk for ages and then suddenly hit the wall and pay for it for the next day or 6.
My few tips for what they’re worth are these:
- If you go out somewhere, or do something you don’t usually do, rest As Soon As You Get Home.
- While you’re doing that activity, stop regularly and rest. So sit down after chopping your veg for tea, or park your buns on a bench while you’re out in town
- Don’t plan one activity after another. If you’ve had a busy day, take the next one off (if you can)
- Choose a couple of days a week as Nothing days, where you don’t cook/clean/go out, you just rest
- Also, it’s ok to feed your children cereal twice a day. You don’t have to home cook every meal and make sure they’re getting 7+ vegetables every single day.
- Rest, several times a day even when you don’t feel tired (this is really important!).
- Change your challenges – if you’re doing brain work, switch to something more body oriented for a while.
Having read a bit about it, I’m trying to move away from my single 2-hour nap in the afternoon, and work on having maybe 2 rest breaks in the morning and 2 in the afternoon and see where that takes me.
Like I said, I’m still learning but there are a couple of good websites I’ve read that go into pacing in depth and explain it well:
http://www.cfsselfhelp.org/library/how-i-use-pacing-manage-cfs
http://www.cfsselfhelp.org/library/9-pacing-strategies
This is a really good website too
http://recoveryfromcfs.org/ch06/
And finally, this is what I’m trying to do more of at the moment; several small rests rather than one longer nap.
https://laurachamberlain.co.uk/2016/07/08/the-benefits-of-rest-in-mecfs/ (I don’t know why this isn’t a link and I’m not using spoons working out how to change it, sorry! 😀 )
Silhouette of Me 
I seriously do not know how you manage to take care of kids when you have this condition. I am an old biddy of 63 so my kids are all grown up. My mind boggles at how I would have coped if they had still been at home.
Pacing is a great idea in theory, but I just don’t know how it is possible. A physio told me at the beginning of my illness to stop just before I get tired. I didn’t (and still don’t) know when I am about to get tired. I definitely know when I am there, but not before. Some days I can potter about the garden pruning for about half an hour and then collapse. Other days I can go about sightseeing for SIX HOURS, and am only feeling slightly tired by the end of it. Winter months are different from summer months energywise. But that doesn’t mean I don’t crash during the summer. It’s the krypton factor.
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When I first got ill I had to have either my mum or my dad down to help full time as my husband works. As I gradually stopped being bedbound I’ve slowly been able to do more but there are days I’m in bed, my husband has to go to work late and the kiddies are so pleased they get an easier day!
I’m the same with unpredictable energy levels but the resting throughout the activity still holds true. Garden for 10, rest for 10 etc and rest even if you feel great, that’s the one I’m working on!
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