When I was looking into starting pacing with a heart-rate monitor, I found too few specifics about exactly how to do it, so I’ll record what’s going on with me in case it helps others.
I’ll assume, here, that you have an understanding of ME/CFS, and that you understand the basics of pacing with a heart monitor (like the Workwell recommendations).
About me and ME/CFS
I first came down with ME/CFS in 2010. It was a relatively mild case for me, and over a number of years I emerged from it without diagnosis or treatment. By 2021 I was in great shape, living an active life that included dancing and lots of walking; my main concession to ME/CFS was that I did not push myself during exercise as much as my Pilates coach wanted me to.
In the summer of 2021, I pushed my body hard twice, two days apart. I might have recovered if I had not tried to continue living a normal life. My capabilities dropped rapidly until, the day after an extra-gentle Pilates session, I found myself unable to do anything but sit in a recliner. I could talk and feed myself, but barely.
For six months I tried to avoid overexertion and I improved again, with lots of ups and downs. In March 2022, a combination of avoidable and unavoidable exertion led once again to severe disability. I realized then that I didn’t have the knowledge and self-control to protect myself from deterioration.
So in late March 2022, terrified that I was facing permanent impairment, I bought myself a device and began pacing with electronic devices. I was disappointed at the amount of information I could find online, and I would have made different choices had I known more—and that’s why I’m writing this now.
How I’m atypical
I’ll assume, here, that you have an understanding of ME/CFS, and that you understand the basics of pacing with a heart monitor (like the Workwell recommendations).
About me and ME/CFS
I first came down with ME/CFS in 2010. It was a relatively mild case for me, and over a number of years I emerged from it without diagnosis or treatment. By 2021 I was in great shape, living an active life that included dancing and lots of walking; my main concession to ME/CFS was that I did not push myself during exercise as much as my Pilates coach wanted me to.
In the summer of 2021, I pushed my body hard twice, two days apart. I might have recovered if I had not tried to continue living a normal life. My capabilities dropped rapidly until, the day after an extra-gentle Pilates session, I found myself unable to do anything but sit in a recliner. I could talk and feed myself, but barely.
For six months I tried to avoid overexertion and I improved again, with lots of ups and downs. In March 2022, a combination of avoidable and unavoidable exertion led once again to severe disability. I realized then that I didn’t have the knowledge and self-control to protect myself from deterioration.
So in late March 2022, terrified that I was facing permanent impairment, I bought myself a device and began pacing with electronic devices. I was disappointed at the amount of information I could find online, and I would have made different choices had I known more—and that’s why I’m writing this now.
How I’m atypical
- I have pain and discomfort only rarely. My common symptoms are things such as weakness, fatigue, balance troubles, tinnitus, vision problems, sleep problems, and palpitations. This makes life with this illness less unpleasant for me than for most people (though it also makes it easier to push myself).
- Cognitive activity affects me less than it affects many others. Physical and emotional stress affects me greatly, but I have not yet noticed an effect from cognitive activity. (I definitely have cognitive effects from exertion, but I haven’t noticed cognition as a significant cause of PEM.) [Update, February 2023: I was dead wrong on this! Although I don't often feel strong cognitive effects, my results from pacing and resting were completely transformed when I started assuming that cognitive activity mattered.]
- I have the luxury of doing nothing for as long as necessary. This relapse came when I was between commitments. My husband and adult son can take care of me, and our budget is not being strained, so I lack the stress that many others would feel in this situation.
