POTS Exercise Protocol Diary: Month 4

It’s December and I’m finally getting this post up! I finished month 4 the week of Thanksgiving, but I was bad about actually keeping up with my entries, so I put off posting this. I wrote a postscript this weekend to recap my experience with the end of the month and with my thoughts looking ahead at month 5. Month 5! Amazing! It feels like I’ve been doing this for forever, but also I can’t believe I’m already at month 5. As a reminder, I’m doing the Children’s Hospital of Philadelphia’s POTS exercise protocol, as recommended to me by one of my physical therapists. Here we go!

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Reminder: I am not a medical provider. Please talk to your medical team before trying an exercise protocol like this. I share my experience to help any other POTS patients who might be considering trying one.

POTS patient Kate the (Almost) Great shares her experience with month 4 of the CHOP POTS exercise protocol.

Catching Up

My trip to Ireland was very fun, and I’m so glad that I went, but it took a lot out of me. We were gone the entire first week of September. I decided to not workout during the weeks of September 9th and 16th because my body was still recovering. I got back to it the week of September 23, but needed to ease into it because I took so much time off. I did 2 30 minute workouts that week – and then was able to get my Rituxan infusion! It was a last-minute appointment, so I couldn’t plan around it. It took me longer than usual to recover from it, so I didn’t go to the gym at all the week of September 30.

POTS Exercise Protocol Diary, Month 4:
Week 1

Monday, October 7, 2019 – I have officially kicked off month 4! It was a “normal” workout today: 50 minutes of recumbent bike with the first and last 10 minutes aiming for a HR below 125 BPM and the middle 30 with a HR between 125 and 145 BPM. This was a typical workout for months 2 and 3. On Thursday, I get to try the upright bike! Very exciting stuff.

Thursday, October 10, 2019 – First upright bike workout is in the books! It wasn’t bad, although it wasn’t easy, until I got off of the bike. I felt like I was going to fall over! I usually walk home from the gym (I don’t want to put people on the bus through Sweaty Kate, and also it’s only 2 stops so it already feels kind of like a waste of money) and stretch when I get home, but this time I stretched at the gym before walking home. And I so glad I did because I was so sore and tired when I got home that I didn’t trust myself to sit down before getting in the shower. I now understand why this month involves the recumbent and upright bikes: it’s too much of a change to expect patients to go straight to the upright.

One thing I’m really glad of is that the workout was shorter than the recumbent bike one on Monday. It was 10 minutes at the beginning and again at the end for a warm-up and cool-down; as always, the goal was to keep my HR below 125 BPM. In the middle was 20 minutes of HR between 125 and 145 BPM. It felt like it took forever, but I think that’s mostly because usually I skim my phone during workouts (it’s harder to keep my HR below 145 than it is to keep it above 125, so it’s boring) and with the upright bike, I can’t consistently do that. I have started listening to my audiobook instead of music, which I think helped because I was focusing on the story. For those of you wondering, I’m currently listening to The Golden Compass, known as The Northern Lights outside of the US.

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POTS Exercise Protocol Diary, Month 4:
Week 2

Monday, October 14, 2019 – Week 2! I’m on my third day of the upright bike and it is making more sorer than I expected. I thought that it wouldn’t be too much of a transition, at least soreness-wise, but I was wrong. And my POTS has been worse than I expected this month. I did hear this year that October is actually a difficult month for POTS patients, which surprised me. But my heart rate at rest this month is higher than it was in the summer! It doesn’t easily get to 170 like it did during the summer, but it’s still 130 when sitting on the couch. Hopefully this exercise protocol helps!

Thursday, October 17, 2019 – Speaking of being sorer … I had no idea that the upright bike could hurt your butt so much when you’re not doing a spin class or something! Just another reason I wish that my knees were better; I can’t do much off-the-seat riding because that puts tons of pressure on my arthritis knees. The bike is getting easier, but it still doesn’t take much to shoot my HR high. I’ve also been trying to alternative resistance levels during the 125-145 BPM HR time in the middle of my workouts.

Saturday, October 18, 2019 – Finishing out week 2 strong! Today was a 145+ BPM day. I’m back at the recumbent bike, as I think this will be easier on my joints for this higher BPM workout. Once again, I alternated resistance levels every 3 minutes. I spend 20 minutes going between level 5 and level 3, and then 15 going between 4 and 2. Yes, my heart rate was easily above 145 at resistance level 3. It doesn’t take much at all to get it up like that! I’m glad that I’m able to get this full week of workouts because next week my work schedule is weird due to my trip to Nashville. I might be able to get a workout in once next week, but there’s no guarantee.

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POTS Exercise Protocol Diary, Month 4:
Week 4

November 17, 2019 – I am finally finishing the 4th month. As I told my mom this morning, my motivation is that I will be halfway done soon, and if it doesn’t work, I only have 4 months left. It’s so frustrating; my joints hurt by doing this, but I’m not feeling any improvements. I want to feel better, but I don’t want to feel worse in order to feel better in a different way.

Postscript – While I didn’t write about it immediately after it happened, I finished month 4 shortly before heading out of town for Thanksgiving. The good thing that came out of this month – I’m trying so hard to look at the positives! – is that riding the up-right bike has gotten a lot easier. To the point where I find the recumbent bike boring now! The last week of this month involved 1 day of the MSS workout, 1 day of the recovery workout, and 2 days of “normal” workout. What will be interesting about month 5 is that I should be moving to upright workouts. Thankfully, I have the option between treadmill workouts and elliptical workouts without the arm movement. I say “thankfully” because I’m not sure if my body can handle treadmill walking for 40 minutes due to the arthritis in my feet, knees, and hips. Actually, it’s not that I’m not sure, as I’m actually 100% sure that it can’t. I’m not sure if my body can handle the elliptical workouts. We’ll find out, I guess!

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