The Paper Tools That Helped Me Pace With ME/CFS
I have ME/CFS. I’m in remission now, which still feels strange to write, but for years pacing was the whole game: working out how much I could do before the crash came, and doing a bit less than that.
What helped most wasn’t clever. It was paper.
- An hour-by-hour diary. Writing down what I did and how I felt, on a simple 0 to 4 scale, showed patterns I couldn’t see from memory. The crash often came a day or two after the thing that caused it, which is exactly why it’s so hard to spot.
- A crash plan on the fridge. On a bad day you can’t think straight, and neither can the people around you. One sheet saying what helps, what to cancel and who to call took the decisions away.
- One place for appointments and medication. Clinic appointments are short. Turning up with a clear record of the last few weeks meant the time went on what mattered.
I’ve turned these into printables, made simple enough to use on a bad day: the activity and pacing diary, a crash plan and a health binder, all in my Etsy shop too. They’re priced to be affordable, because being ill is expensive enough.
If you’d rather use your phone, Nuchronic is the same idea as an iOS app: a daily check-in in a few taps, your crash plan and health records together, and a PDF to take to appointments. It doesn’t track you, and your data stays on your device.
None of this is medical advice, just what worked for me. If you’re in the middle of it, go gently.
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I have ME/CFS. I’m in remission now, which still feels strange to write, but for years pacing was the whole game: working out how much I could do before the…
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