I began HRM pacing on March 24, 2022, when I was in PEM again and could hardly walk. Since I (fortunately) don’t have pain, I can (unfortunately) push myself even in deep PEM. My walking pace made a bride’s progression down the aisle look speedy, but I managed to drive to REI and buy myself a watch.
I spent most of that day in a recliner, trying to keep my heart rate below 15 beats per minute above my resting heart rate.
The second day, I stayed in bed to keep my heart rate lower. If I had it to do over again, I would stay out of bed (or at least stay in bed no more than two or three days). I would severely limit my activity while staying mostly upright. My watch, as I later learned, was not giving me accurate data, so I will never know how bad my POTS was before my bedrest—but now it’s quite bad.
While I knew that being in bed was not good for the body, I also knew how quickly I was deteriorating. Everything I had read said that letting my heart rate get too high would endanger my health. I wanted permission from someone to tell me that it was okay to let my heart rate get over my chosen limit in order to remain a bit more active, but I couldn’t find that permission. (I also didn’t know that lying down for too long could cause POTS.) I saw no choice but to follow the only advice I had seen for how to avoid deterioration, which was: keep your heart rate low.
Since then, I’ve heard the recommendation to taper activity when beginning monitoring, and that a sudden cessation activity can be hard on us. Certainly, if I could do it again, I would at least try staying upright for another week or two, to see what would happen to my heart rate when I stopped doing any other exertion.
Also, I would schedule in periods of true rest. I hadn’t learned about true rest yet—lying down in a dark, quiet room, doing nothing. I could have scheduled some times during the day to do this. In order to avoid walking, I would probably have rested in my recliner.
But I didn’t taper, and I didn’t do true rest. Here’s what actually happened.
Day 2: I stayed in bed almost the whole day, getting up only to use the bathroom. Even talking or playing a simple game on my phone put my heart rate over the limit. I spent much of the day listening to podcasts. When I sat and ate dinner with the family, my watch gave me credit for aerobic exercise!
Day 3: I stayed in bed again.
Day 4: I was very discouraged, because for some time, the only way I could get my heart rate below my limit was to lie flat on my stomach without a pillow, with my arms in a specific position.
Day 5 and forward: I started to do more activity. I came downstairs and sat in my recliner. I did little jobs (started washer, fed animals, got food out of the kitchen). I wondered whether I was doing too much. To gain more insight into this, I ordered myself a chest strap so that I could learn more specifics about my heart rate variability instead of relying on Garmin’s “body battery” and “stress” ratings.
If lying down was one of my worse decisions, buying a chest strap was certainly among the best! Chest straps don't work for everyone, but they do for me.
[Note, July 24 2022: I originally thought I would give a chronological narrative of my experiences, and this was the first installment, but I abandoned that plan quickly. I'll just say, now, that I definitely was moving around too much! I think I was hoping that I was actually thought the PEM and could increase my activity and maybe even my anaerobic threshold, which shows how naive I was.]
I spent most of that day in a recliner, trying to keep my heart rate below 15 beats per minute above my resting heart rate.
The second day, I stayed in bed to keep my heart rate lower. If I had it to do over again, I would stay out of bed (or at least stay in bed no more than two or three days). I would severely limit my activity while staying mostly upright. My watch, as I later learned, was not giving me accurate data, so I will never know how bad my POTS was before my bedrest—but now it’s quite bad.
While I knew that being in bed was not good for the body, I also knew how quickly I was deteriorating. Everything I had read said that letting my heart rate get too high would endanger my health. I wanted permission from someone to tell me that it was okay to let my heart rate get over my chosen limit in order to remain a bit more active, but I couldn’t find that permission. (I also didn’t know that lying down for too long could cause POTS.) I saw no choice but to follow the only advice I had seen for how to avoid deterioration, which was: keep your heart rate low.
Since then, I’ve heard the recommendation to taper activity when beginning monitoring, and that a sudden cessation activity can be hard on us. Certainly, if I could do it again, I would at least try staying upright for another week or two, to see what would happen to my heart rate when I stopped doing any other exertion.
Also, I would schedule in periods of true rest. I hadn’t learned about true rest yet—lying down in a dark, quiet room, doing nothing. I could have scheduled some times during the day to do this. In order to avoid walking, I would probably have rested in my recliner.
But I didn’t taper, and I didn’t do true rest. Here’s what actually happened.
Day 2: I stayed in bed almost the whole day, getting up only to use the bathroom. Even talking or playing a simple game on my phone put my heart rate over the limit. I spent much of the day listening to podcasts. When I sat and ate dinner with the family, my watch gave me credit for aerobic exercise!
Day 3: I stayed in bed again.
Day 4: I was very discouraged, because for some time, the only way I could get my heart rate below my limit was to lie flat on my stomach without a pillow, with my arms in a specific position.
Day 5 and forward: I started to do more activity. I came downstairs and sat in my recliner. I did little jobs (started washer, fed animals, got food out of the kitchen). I wondered whether I was doing too much. To gain more insight into this, I ordered myself a chest strap so that I could learn more specifics about my heart rate variability instead of relying on Garmin’s “body battery” and “stress” ratings.
If lying down was one of my worse decisions, buying a chest strap was certainly among the best! Chest straps don't work for everyone, but they do for me.
[Note, July 24 2022: I originally thought I would give a chronological narrative of my experiences, and this was the first installment, but I abandoned that plan quickly. I'll just say, now, that I definitely was moving around too much! I think I was hoping that I was actually thought the PEM and could increase my activity and maybe even my anaerobic threshold, which shows how naive I was.]
