Okay, first things first: do not start exercising without talking to your doctor first. Everyone’s body is different. I am finally at the point where my heart rate can get crazy high and my blood pressure doesn’t drop crazy low.
I would never ever want anyone to try what I do and pass out and get hurt!
After you do talk to your doctor though, this is what I have been doing!
So I ended up on bed rest in October-November 2019. This was not at all the first time I ended up on bed rest, and if I had to guess, it won’t be the last time either. It’s not fun to think of the future like that, but it’s a reality when you have a chronic illness.
While this wasn’t the first time I was on bed rest, this was the first time I “exercised” my way out of it. I use that term lightly because it’s pretty subjective. What I do as exercise currently kicks my butt, but to a regular person, it probably wouldn’t even be a warm up.
That’s okay though, I try to avoid comparison because while someone else may be able to lift way more then me, I know I am so strong mentally because of all that has happened to me and I can get through tough situations now without a thought.
It’s all how you look at things my friends.
So anyways, I was to the point where even standing up was difficult for me anymore and I would sometimes take multiple naps throughout the day.
Walking was so extremely hard, and any actual exercise was out of the question.
I am still not “functional” again as I’m writing this, but I have made so much progress and know that I will be again!
This does have a lot to do with exercise, and is honestly the only proven way to treat POTS. I know that you may cringe at that, but let me assure you that this post isn’t meant to feel judgemental at all, it’s just an encouragement that while it’s so extremely difficult and takes a really long time, it is doable. You just have to really commit and be extremely determined.
Everytime anyone has brought up exercise in the past, I would cringe and get defensive. From anyone. Family, friends, doctor’s. I think that was because it would be brought up as just another “miracle” cure thrown about way to often by family and friends who were far too ignorant to even Google my diagnosis. And honestly, doctors were no better.
Either they didn’t know about my illness at all, or they would throw out the term exercise as a way to shame me. When I would tell them that I passed out when I tried, they either didn’t believe me or stuck by what they said anyways.
Needless to say, that put a seriously bad taste in my mouth towards it!
Until, about 2 years ago, I asked my previous cardiologist if I could do physical therapy. He wrote me a script for it, and I was able to see the same PT that was treating my pelvic floor issues.
She was seriously wonderful! Always accommodating, always understanding, and always encouraging. The medical profession desperately needs more people like her.
She really changed my mindset around exercise, and that was the first time that I saw how exercising could actually make you feel better, not worse.
That happened because she started me out so slow. Like bare minimum. This was so beneficial because it built me up so slowly that I never had a crash specifically from exercise!
This way I could keep on improving slowly, while never having a negative experience. This to me is so important!
If you just start out with even 10 minutes of some type of gentle cardio, chances are you will still get a crash from that.
I had to start out so extremely slow, and now I am up to doing a mile, with the hope and goal of being able to run someday.
By building up so slowly, it allows exercise to be enjoyable. I get the benefits of the endorphins without killing my body in the meantime.
So, this is what I did and how I started exercising with POTS.
1. Start Off Slower Than You Think You Need To
Okay, so when you first start being intentional about exercising to improve your POTS, start out much slower then you think you need to.
Like take the bare minimum of what you think you can handle, and do less.
I know that seems stupid or counterintuitive, but I say this for a reason. You don’t want to start pushing yourself right off the bat. That’s a perfect way to send yourself into a crash, spend a week in bed, then have a very negative mindset towards exercise because it literally caused you to have a crash.
It’s much better to start yourself out with less then you know you are capable of because this creates a positive mindset towards exercise.
You become confident that you can handle it, that it’s kind to your body, and that it’s doable. This ground work will be so important to progress!
If you are an achiever like myself, it may be hard to ONLY do less then the bare minimum, but seriously, stick to whatever that looks like for about a week.
For me, that looked like just 2 minutes on my treadmill. Our treadmill is permanently inclined and that makes things so much harder, so I started there to not only give me a baseline for my muscles but for my mindset that I could use that and be okay.
2. Increase Slowly
I know it’s annoying to move and progress so slowly, but it will be a much quicker process this way then if you send yourself into a crash and quit for the next 3 months. I have done both before, and I much prefer the slow process.
A side benefit is that it teaches you to be patient even more!
So now that I had a baseline of 2 minutes on the treadmill, I then started increasing just one minute at a time. First 3 minutes, then 4, then 5, and so on. I would add a minute every week at least. If you feel that you can add even quicker, that’s fine, just make sure that you have the energy to do it. If you don’t, that’s where a crash can happen, and we seriously want to avoided having a crash due to exercise.
You don’t exercise with the short term in mind, you do it with the long term in mind. You do it today so a year down the road, you can still easily do it.
Once it starts to get hard and you start to feel it become draining, do not add anything else. Stay there for a bit until it becomes easier!
I think I walked 5 minutes on my treadmill every day for over a week until I knew I could go to 6 minutes without causing a crash.
3. Change It Up Slightly
Once I was able to get to around 12 minutes on my treadmill, I decided to start walking outside. We were having a fairly mild beginning to the winter, and I enjoy being outside when I could.
At first I started to just walk around the block, and then I eventually committed to doing a mile. It takes me about 20 minutes to do a mile in my village.
The first couple of times were hard. My legs felt like Jell-O and my lungs were on fire. If I did a mile walk, my day was done after that. There was no energy left to do anything.
But after a couple of weeks, it started getting easier. I didn’t feel like my chest was collapsing when I got back, my leg muscles wouldn’t spasm, and if I rested immediately after, I could still do something later in the day.
Even though I was still fatigued while walking (and usually still am), my body wasn’t giving out doing it.
I don’t go for mile walks everyday now, but I do average about 4 times a week. It took me all of December and half of January to be able to get there though, so be patient with your body in this process.
4. Keep Adding Slowly
This process can really be summed up by the whole idea of “slow and steady wins the race.”
I have just now added in small baby weights to my exercise routine, on top of walking a mile. This is after 2 months of working up to walking a mile 4 times a week. It’s slow guys, but it is working.
When I say baby weights, I mean like 2-5Ib weights, and I only do 1 set of reps of very simple exercises.
If it’s safe and your ready to add in weights to your routine too, what I did is I just searched Pinterest for back and core building weight exercises. The graphic will tell you to do 3 sets of 10 reps of like 10 different exercises, but like I keep saying and I’m sure you are so tired of hearing, go slow!
I picked like 6 different, easy exercises to do, and I’m doing 10 reps and that’s it right now. I started off with 2Ib weights, then I moved up to 5Ib. Once I feel good doing this for a few weeks, then I will add in 1-2 more exercises with them. After that, maybe I will start doing 2 sets instead of just one.
The important part is not how much I can do but how well I listen to my body.
If I am severely symptomatic that day, I don’t do it. Even if it’s for a few days to a week that I’m heavily symptomatic, I still let my body rest when it’s asking me to.
Once you start this process, you will be able to tell when your body is asking for movement, and when it’s asking for rest.
I wish healthy people understood that exercise is not a form of punishment, but that it’s seriously a gift.
Unhealthy people would love to be capable of going to the gym 5 days a week at 6am in the morning. I one day hope to be there, but understand that it will take a long time to be able to for myself.
But that’s okay, I’m in this for the long haul. I’m determined and trying to be safe and smart about it, and that combination will get me to wherever I want to go.
If you are also starting out on using exercise to treat your chronic illness, please be safe, please be smart, and please talk to your doctor about it!
Also, if you have POTs, the Dash protocol is something to look into as well! The reason I didn’t start with this is that I currently don’t have access to a gym, but hope to be able to soon! If I do start it, I will 100% share my experience with you all!