a dysautonomiac exercises at home…

Because I have dragged you all through numerous posts about exercise, like this and this, I kind of feel like you’re along for the entire journey, and I owe you status reports. You’re like my spotters, and I owe you a thick, goopy protein shake for keeping me motivated. So, drink up, friends.

I have a Fitbit. I know…..who doesn’t, right? When I first quit the gym and  began working out at home, I set a daily “steps” goal. I began at 10,000 steps per day, and quickly realized that was a lofty goal. So I lowered it to 7,500 steps. Not happening. 5,000 steps. No. Still no.

4,000 steps. Boom. Magic number.

my dog
be honest – don’t you want to walk 4,000 steps for this face??

I’m not as inactive as 4,000 steps suggests. I play with my dog outside at least twice everyday, and take him for a walk at least once. But for the rest of the day, I sit on my ass in front of a desk. I try to get in as many steps as I can, but due to the blood pooling and low blood volume of postural orthostatic tachycardia syndrome (POTS), I still struggle with any exercise that requires me to stand.

Because upright activity ain’t my thang, all of my cardio is relegated to my recumbent bicycle who, as you may remember, I call “Indiana Jones”, because it makes climbing on top a little more desirable. When I first started riding Indy a couple months ago, I was limited to 5 minutes. I have worked hard in that time, and am happy to report my rides are now about 15 minutes at level 7-8.

I still have to lie down immediately after riding, so we moved the bike into the bedroom so I can crawl into bed afterward. If I go more than a few days without riding, I have to start back at 5 minutes on a low level. It’s amazing how quickly all that progress is undone.

Trying to find the right time to exercise was a challenge. I cannot do it in the morning, as it will leave me with too much fatigue and palpitations to function for the rest of the day. And, I shower in the morning, and that’s enough exercise for the first half of the day. I drink a lot of fluids after exercising to prevent migraines and days-long fatigue, so riding too late results in having to get up multiple times per night to use the bathroom. Late afternoon/early evening seems to work best for me.

exercise at desk
reverse pushups at my desk

These days I ride every other day, but I hope to get to a point where I can ride everyday. In the meantime, I try to squeeze in little exercises wherever I can:

  • At the office, each time I get up to use the restroom, I do 15 reverse pushups and chair situps when I return to my desk.
  • When I get up to get a drink or use the bathroom at home or work, I walk on my tippy toes to strengthen my calves.
  • I will occasionally wear ankle weights when walking around the house.
  • Lift weights while watching t.v.
  • I try to do a 7 minute abs app 4-5 times per week. [Spoiler alert: I have probably completed at least 400 minutes and still do not have abs to speak of.]

Somedays all I can manage are the little things, like sashaying a few steps into the kitchen, or dancing a few steps with my dog. But somehow I am certain the little things are will lead to greater improvement.

I am pleased with the progress I have made and have noticed a difference in my abilities. Now, I can wait in a grocery store line behind someone (so long as its not Mildred, the sweet old lady who likes to search her purse for that one coupon she’s certain she has). I can’t stand long enough to wait behind two people, but…..#goals.

treadmill for exercise
treadmill in our messy garage

We finally set up our treadmill in the garage. My next goal is to be able to walk a mile on the treadmill by the end of summer. Wish me luck, friends.

If you’re looking for inspiration, I highly recommend following @Carrie_strongereveryday on Instagram. She also has dysautonomia and regularly posts about exercising and lifting. You’re also welcome to follow me on IG (@thalinds), but my posts aren’t as inspiring, unless handsome dogs and cold beer get you going.

“Making your mark on the world is hard. If it were easy, everybody would do it. But it’s not. It takes patience, it takes commitment, and it comes with plenty of failure along the way. The real test is not whether you avoid this failure, because you won’t. It’s whether you let it harden or shame you into inaction, or whether you learn from it; whether you choose to persevere.” – Barack Obama
Smell ya later.
– Linds


6 Replies to “a dysautonomiac exercises at home…”

  1. Hey Linds, great to hear your progress! I finally moved to Washington state to get out of the AZ heat, so fortunately my POTS has been easier to manage. Interestingly enough I now also work as a nurse in a cardiology clinic, and we have seen quite a few POTS patients recently. Getting exercise is one of the biggest things I’ve tried to educate my patients on. I know that has helped me significantly improved my ability to function. I still have trouble with stairs and walking up inclines, but it’s a huge difference from when I got out of the hospital, and couldn’t walk across the street to get my mail!

    1. That’s wonderful! I’m so glad you got out of the AZ heat! I can’t go visit my family there during the summer – just too hot. How wonderful that you’re able to educate your POTS patients about getting exercise. Having that support from someone who has been through the same thing is amazing.

  2. Ankle weights? That’s genius! Now I’ll be getting myself some…

    So, about your recumbent biking…do you have a set “program”? Do you have heart rate goals? Some programs focus so much on “Your heart rate must be within target range for 75% of the workout or else!” and stuff like that…but how important is that, really? Personally I think it should be all about strengthening your legs. My bike is in our bedroom too, so I can slither off it to the bed!😂

    1. Sorry for the delayed response, for some reason I’m just seeing this now!

      I love my ankle weights! They are adjustable 5lbs weights – each weight contains 5 little inserts at 1lb each, so I can adjust the weight of each one anywhere between 1-5 lbs. I love that I can just wear them around the house while doing whatever, or I can lie in bed and do leg lifts. They were the very first piece of exercise equipment I bought years ago after first being diagnosed.

      I don’t pay that much attention to heart rate goals, because I feel like with POTS we don’t fit the standard criteria. Based on my age, my target heart range (according to those fitness calculators) is anywhere between 100 to 155. 100? Please. I stand up and I’m 100. My HR doesn’t get too high when riding the bike (vs. standing exercises like walking), so it isn’t too much of a concern for me, but when doing any exercise I try to keep it under 180.

      Nap time after riding is the best!

  3. You are soo cool. Thanks for sharing. PS. That face!!! Animals are the best thing about this world…….

  4. Thank you for writing this, Linds! This is exactly what I needed to read to get started with the PT part of my recovery. I couldn’t even begin until I started this latest combination of medications, but now it just felt too overwhelming since I couldn’t do the things I used to. I have so much admiration for your attitude and self-discipline.

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