Levine's POTS Exercise Program: Week 1

I'm about to start my 3rd week on the exercise protocol, and I figured I should probably write about the first week before I forget it. I mean, I took some notes but there's only so much that can be done against the brainfog! So, let us see if I can take some words and piece them together somewhat coherently, shall we? (By the way, you can read about my intake and intent for this blog series here.)

The first week was hard for me in a way I wasn't expecting, honestly. I had been waiting so long to get into the program (let alone waiting to ACTIVELY do something that might make me feel better) that I wanted to hit the ground running, basically. (Or, hit the ground recumbent biking..... see what I did there?! Haha! ... ha......) 

RIGHT so, over the past 10 years of this disorder, I've learned a lot about my limitations. And a loooooot about myself in relation to how I feel about limitations. In short, if I kept going how I was before (and for a few years after I got sick) I was never going to get better. I did not listen to my body, did not respect my limitations and see them for the good things they can actually be. However, over the years, I have gotten better at this, and have found a medium where I still push a little bit, but not enough to over do it. And it's where I've been operating for a while. 

However, Week 1... the PTs didn't want me doing even that much pushing. They explained it like this (which I found helpful): if my POTS is a ceiling, what we/I/they want to do is to push up against the ceiling over and over, until the ceiling moves a little bit. Then rinse and repeat. They do not want to "punch through" it because that only sets us back, increases the time spent in recovery, and does more damage than good. 

So, basically, the first week was a lot of me getting used to this. I had stopped "punching through" the ceiling a long time ago, but I was still (continuing with the metaphor) taking chunks out of it now and again. I needed to slow down even more. Which has been tough for me--I'm presented with something that could increase my quality of life and I. WANT. TO. GET. BETTER. NOW. But I can understand WHY I need to take my time. And if I'm going to put myself through this program, I might as well do it the way they have seen it work. 

Anyway, the first week was mainly them checking my heart-rate and blood pressure throughout 20ish minutes of intervals on the recumbent bike. This, obviously, was to keep an eye on how my body was responding. But also checking in on my symptoms, how frequently they were occurring, how intense, etc. Basically finding out where on the protocol I should start so that my body was being pushed, but not pushed too far.

I was still a bit tired throughout the week, but not as tired as I was expecting (again, as I've been used to the taking out chunks in the ceiling). I was expecting being bed-bound, honestly, but that's because that's how I had done things in the past. But was happily surprised that I was still able to do mostly what I had been able prior to starting, save for an extra nap here and there, some more fibromyalgia pain, etc..... I guess it's all relative, huh. :) 

Another thing I took away from Week 1 is my PT (who is awesome) was saying how POTS, for a lot of people, is both a cardiac issue and a neurological issue. So while we're working on the cardiac side of it with the program, the neurological side is habitual. Needing repetition and time to sort of figure out the right way to work. POTS is vast and varies from person to person, but it makes sense to me and I will have to read up on this concept when I have some more time and energy. (Or, if anyone has good articles/research, please send them my way if you can!)

Lastly, and the weirdest thing—it's strange being around people who actually know shit about POTS. Usually I'm the one explaining it, but there have been instances where the PTs have told me things I wasn't aware of. Plus, there's just an all-around feeling of someone "knowing about it". It's really weird and surreal, but nice. In the same vein, we've also been bouncing our knowledge off each other. Mine as my experience first hand and them as they continue to work with POTS patients. 

Anyway, there are other things to talk about, but those are the main ones I took away from the first week. I'm neither hopeful nor cynical at this point, I guess. I'm just doing. One step in front of the other, one day at a time. I guess that's all we really can do regardless of where we our in battle against POTS, yeah? :)

Hugs,
s.e.c