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in Health &middot September 3, 2019

POTS Exercise Protocol Diary: Month 3

While neither of the first 2 months of this exercise protocol were easy, month 3 was so. hard. Which is why this post is coming out at the beginning of September and not August! With summer plans and really hot weather – not to mention an RA flare – this month was difficult to keep up with. To the point where I repeated a week for the first time! But before I spoil the post, I had better stop this intro so you can read the diary entries yourself.

(Short recap for those of you who are new to this series: I have postular orthostatic tachycardia syndrome and am doing Children’s Hospital of Philadelphia’s POTS exercise protocol. Please talk to your medical team before starting an exercise program like this!)

All POTS Exercise Protocol Diary posts

POTS patient and Boston blogger Kate the (Almost) Great shares her experience with month 3 of Children's Hospital of Philadelphia's POTS Exercise Protocol

POTS Exercise Protocol Diary, Month 3:
Week 1

July 15, 2019 – And we’re off! I started Month 3 today. It was, overall, a simple workout: 10 minutes of warm-up, 30 minutes of activity with my heart rate at 125-145 bpm, and 10 minutes of cool-down. However, the workout flew by because I got not-good test results back on a blood test (not good, but not bad, per se) and it made me extremely pissed off. How dare my body try to do something ELSE wrong. It is extremely rude and I’m not a fan. It might turn out to be nothing, or something minor, but in the moment, it made me extremely angry, so I channeled it into my workout.

June 25, 2019 – This is kind of awkward but … I am finishing week 1 10 days after I started. I did my second day of the week on June 17, and was going to workout over the weekend but it was SO HOT. And what is the point of working out for POTS if you’re going to experience worse POTS symptoms just getting to the gym? And then Tuesday (2 days ago) I had really bad RA symptoms due to weather. So here we are.

This has totally thrown off my workout schedule, obviously. Especially because next week I’m supposed to start my MSS workouts, but I’m going to Maine for a family reunion. So I guess my new goal for Month 3 is to finish it before I go to Ireland in September!

POTS Exercise Protocol Diary, Month 3:
Week 2

July 28, 2019 – Finally started week 2! Honestly, I don’t like month 3 so far. The workouts are boring, and because it’s July, my HR gets really high really easily. I almost passed out in public yesterday. I set my bike to resistance level *3* and my HR went to 152. And I’m in AC. So that’s how my life is going.

I’m also worried that people will think that I feel better than I do because I’m going to the gym now. My pain isn’t improved because I’m going to the gym. I’m going in spite of my pain because my POTS is making me miserable. It’s not that my pain has gotten better and because of that my POTS is the bigger issue. It’s that my POTS is, for now, the bigger issue than the arthritis, which is a sign of how bad the POTS is, not how good the arthritis is.

August 10, 2019 – Whoo boy. Between heat and pain and my schedule, week 2 has taken FOREVER. So much so that I decided to repeat week 2. But I’m currently finishing my first ever MSS workout! These are workouts in which my heart rate should be 150-160 for most of the workout. As you guys know, it doesn’t take much for my heart rate to get up to 150, but that doesn’t mean that I’m not extremely sweaty at the moment. Tomorrow I will finish week 2 (finally) with a 40-minute recovery workout. I’ve figured out that if I stick to a schedule I’ve worked out, I’ll finish month 3 before I go to Ireland in September.

POTS Exercise Protocol Diary, Month 3:
Week 3

August 19, 2019 – One thing I’ve been struggling with recently is that I’m not sure if I’m actually doing anything. The point is to retrain your heart to beat correctly to the appropriate amount of exertion. Since it’s so easy to get my heart rate high with only minimal exertion, I worry that it’s not making a difference. To hopefully deal with that, I’ve adjusted how I do my workouts. They’re all generally 50 minutes long (10 minutes of warm-up aka HR below 125, 30 minutes of 125-145, and 10 minutes of cool-down aka HR below 125). During that 30-minute stretch, I’ll do 5 minutes at a resistance level of 3 as it really takes very little to get my heart rate to that needed range. I’ll try to keep my HR closer to 145 than 125 in that time. Then, I’ll do 5 minutes at a resistance level of 2, trying to keep my HR closer to 125. I go back and forth for that 30 minute stretch.

This is helping a little, as once my heart rate gets high, it’s hard to bring it back down again, so even at level 3, my HR might be 150 if I keep the same pace. Decreasing after 5 minutes is a way to stop that cycle so that my body doesn’t start associating the low-level activity of cycling at 3 with 150 bpm. Hopefully this will help long-term!

POTS Exercise Protocol Diary, Month 3:
Week 4

August 27, 2019 – Finally made it to week 4! Between summer plans and heat, it has taken me forever. But I did it. I didn’t to a full workout today; I was supposed to do 50 minutes and instead I did 30. I had so much going on today (not to mention this RA flare) that I couldn’t do 50. But I did 30, which is better than 0! It wasn’t awesome, but it wasn’t as bad as I thought it might be.

August 29, 2019 – I did my second MSS workout today! It was hard, for sure. I did 10 minutes at less than 125 bpm HR, 25 at 150-170, and 10 back below 125. I’m exhausted (which is why I did it at the end of the day) but I’m proud of myself. All I have left is a normal 50-minute workout on Saturday and then I’m done with month 3!

All POTS Exercise Protocol Diaries

The Essential POTS Symptom Journal

Like this post? Check out:

How To Actually Rest When You Take Breaks, What Every POTS Syndrome Patient Needs for the Summer, Chronic Illness and Mental Health, POTS and Heat Intolerance

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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