Trusting the Numbers 3: First week of pacing

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.]

Comments

Good blog you've started here. Thanks for taking the time to share the specifics of your observations, experiences and methods of attack, so to speak.

I have also found the specifics of pacing to be a rather frustrating, and at times grueling process. Sometimes I get it aligned, others I overdo it before I realize I did so, and yet other times I just say screw it, I'm still breathing so I need to live a bit. For instance this past weekend my son wanted to take my wife and I out on his boat. I was already in mild PEM from a doctor visits and tests last Thursday. But the weekend was a great weather, my son was so happy about having a boat, and my wife really wanted to go out on the lake. So I said screw it, I'm going along! I did my slow walk down the ramp and across the dock with my cane and service dog, and had a great time on the water.

Well today I've been confined to a reclining position on the couch with full body pain, cognitive slides, lightheadedness, dizziness, severe tinnitus, fluctuating fading eyesight, etc, etc, etc. BUT I am happy I went on the boat ride, especially having been mostly bed ridden all winter.

Yes the act of proper pacing is challenging for many reasons.

Me and my service dog on the boat this weekend :)

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That looks like fun! Getting back on our boat is something I hope to do at some point, too.

It's such a shame that it comes at such cost.
 
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