Levine's POTS Exercise Program: April 2017

Hi there!  I have a number of things to catch everyone up on and possibly not enough brain capacity to do it so *stretches fingers* here goes!

Last I blogged was in early April (hahaha... remember when I said I'd try to blog at the end of each week? That was a good one, right?!) and was coming down with a cold. As suspected, my conditioning changed a bit while I was on bed-rest and my body spent its energy on getting better. Luckily it didn't knock me out of commission for too long (I believe I missed only two days of rehab) and it only bumped me back a few days on my progress, which was pretty exciting. I made sure to take it very easy my first day back and not to push it, as it was difficult to gauge when I felt well enough to resume again vs trying not to hop back into it too quickly. I'm happy to say that it took me a week or so to get back to where I was prior to getting sick, which was far quicker than I expected.

Later in April something remarkable happened... I did a huge crap-ton of things in 5 days and I didn't turn into mush! The setting: me in my fantastical, wonderful, amazing, beautiful cousin's wedding which was close enough for me to drive to. The plot-twist: work blew up beforehand and a lot of the prep work fell onto me. The result: (are you ready for this jelly?!) Wednesday I ran errands for about 5 hours or so...Thursday was spent cleaning the house, packing, etc. etc., literally an all day kind of deal. Naps were included obviously, but relatively short ones...Friday drove 7 hours, hit the ground running for rehearsal and the rehearsal dinner, got to bed late after visiting with family...Saturday was the big day! Hair-did, travel to the wedding venue, hustling around to help the bride, getting dressed, going off to take pictures. Ah! I almost forgot! I had to run half a mile in flip-flops to get my cousin Peptobismal. TRUE. STORY. (And yyyeeeah, sorry to share this with the world, Trish. Loveyoumeanit!). Anyhoo, back for more photos, lovely wedding walking and standing and happy tears, food, dancing, maybe a glass or two of alcohol (I'm not at liberty to say) before staying up late talking to my brothers and then—boom—Sunday, which included waking up early for family brunch, then driving 7 hours back home AND I DIDN'T DIE.

Seriously, how the hell was ANY of that possible?

Now, I was pretty pooped the Monday getting back, and still a little bit on Tuesday. But it wasn't a crash. It felt like... an appropriate response or something. It was WEIRD.

However, I still have trouble attributing this to the program. Like, I keep thinking, "Well, maybe I would've been able to do it months ago anyway!" But I just don't think that is the case, nor do I know why I'm so hesitant to attribute my improved condition to the exercise program. I think I've probably become a skeptic—maybe even a cynic?—about anything related to treating POTS (shocking, I know...) Plus, it's just hard to see potential changes when you're inside of them, especially if they're happening incrementally. Of course, I don't think exercise has been the "cure-all" for me. Not by a flipping long shot. All two of you that read this blog will know there's a lot of stuff I've put into motion to increase my quality of life—things I have found to be just as important as the rehab. But, that said, I have to add that the effort and dedication I have put into this program has, I think, definitely paid off.

Of course, that's the kicker though right? Being able to stick with it? To find that middle road where you're pushing but not too much? To be able to understand your body enough to know if all the struggle is actually benefiting you after a couple of months or not. I know when I put myself through my own "program" 5 years ago (again, don't be stupid like me and do that) I felt like shit but, to a degree, I was able to start feeling myself getting stronger. And maybe that's the good thing about this program. Maybe I haven't been able to feel it as much because I have been doing it more slowly and more responsibly. And then it's like one day I wake up and do crazy superhuman wedding shit for 5 days that would've normally turned me into a little Carson blob on the floor.

So, that's April for you. May brought along a lot of changes as well. More specific data type ones if that's your thing. And, hopefully, it won't take me another two months before I sit down to write about it.

I hope everyone is doing OK, that there is at least some helpful information you are finding in these ramblings. And if there are any questions I will definitely do my best to answer them.

Be well!

Sarah

 

Levine's POTS Exercise Program: Week.... uh........??

Ok, I'm going to start this off by saying sorry for being MIA the past few weeks. I've been hyper focused on rehab, as well as things on the writing front, so most of my energy has been going toward those and everything else has basically fallen a) out of my head or 2) off my radar. 

As it is, I am sick this week and all hopped up on DayQuil, so there is no certainty this post will be any form of informative but—hey!—it's not like that's stopped me before amIright?!

I get to used GIFs less sparringly when I'm sick; that's a rule I just made up.

I get to used GIFs less sparringly when I'm sick; that's a rule I just made up.

I think I left last blog saying we were going to try me with some walking to change things up and see how I did because I was progressing surprisingly well; my symptoms have been extremely consistent over the course of the 9 weeks so my PT felt hopeful about it. And, it was a little rough, but I have been able to transition to most, if not all, rehab on the treadmill. Times have changed and shortened from what they were on the recumbent bike, of course. But it is nice to be up and moving. Typically, the program has the patient go from recumbent bike (or swimming, or rowing) to stationary bike, to walking. My PT feel that because I put myself through some intense exercise 5 years ago (*NOT* recommended, by the way), I was able to help with some of my reconditioning, which has allowed me to respond so positively to this program. 

Most of the people within the POTS group at the center have had the condition for a few years. I seem to be the "veteran" of the group at being officially diagnosed in 2007. Everyone moves at their own speed and what their bodies can handle; a girl who was in the program before I got there is still kicking ass on the recumbent bike. I wondered if my having the condition longer was attributable to my response to the program, but my PT said it's usually the opposite. Usually the longer one has it, the more deconditioned they become. But she went on to say how there is really no "step-by-step" way with POTS; it's such an individual condition that affects everyone so differently. Which is one of the reasons it makes it such a pain in fricking the ass to treat (I might've said that last part). 

This GIF has absolutely nothing to do with anything, I just think we could probably use a little more Nick Miller in our lives.

This GIF has absolutely nothing to do with anything, I just think we could probably use a little more Nick Miller in our lives.

I guess I have been worried to share my progress because I do not want to imply this will happen to everyone. Nor do I want anyone to compare their progression with mine, just a I try not to compare my progression with anyone else's (there are POTS patients running marathons! I think they might secretly be sorcerers). I think it's probably a very human thing to do, though—I mean, I'm proud of where I am but there's also that part of me that's like, "Wow. How did they get to running... a mile... and then... 26 of them... in a ROW?!" 

But maybe that's the thing right there, we just have to make sure we're still proud of where we are. Whether it's trying to sit up in bed without passing out, taking a shower without getting the crap kicked out of us for the next five days, recumbent biking for 3 minutes, not puking for 24 hours, walk-crawling, or running for just 10 more seconds because—shit—we sure as hell have fought to get wherever we are, that's for damn sure. 

Anyhoo, I've taken a few days off of rehab due to my cold and, since I can decondition like a MF, that means I'll be in a different spot when I'm able get back on the horse. I'll let y'all know how that goes as this has been something I've been worried about ever since I start the program. Either way, I'll have more knowledge of what to do next time the universe thinks it's funny to give me a cold, and my period, on top of a myriad of chronic illnesses. 

Me to to the universe, only I'm slightly less bathed... 

Me to to the universe, only I'm slightly less bathed... 

In the meantime, y'all kick ass and are some of the strongest people I know. Love, S

Levine's POTS Exercise Program: Week 5 (& I have GRAPHS!)

Now, don't you worry! This post doesn't include any swearwords or minor break downs (like my last one). In fact, things have been plugging along and yielding some interesting observations. I even have GRAPHS, people! Things are getting real up in here!

So, I can't believe it's the end of my 5th week doing Levine's Program already. This week was probably the most fatigued I've been so far, so I wonder if that means we're really starting push against the "ceiling" my PT told me about (I wrote about it here). Which would be exciting, as that would hopefully mean possible improvements as far as symptoms/fatigue/etc. goes. But we'll just have to wait and see.

However, there have been a few other potentially hopeful things I've noticed this week:

  • It feels like I have to work a little bit harder to keep my heart-rate up. It is still high, especially compared to typical people who would be doing the same exercise. But comparing Week I to now, it feels like it is requiring a bit more exertion to get it in the zones I aim for when I exercise. So, that's exciting! Especially since, you know, I scratch my nose and my heart-rate shoots up into the freaking stratosphere. 
  • The past couple times I have been at the center, my heart-rate has returned to what it was before I started exercising. So, when I first come in, they take my baseline HR, blood pressure, and pain levels. As I workout, they take them again at certain intervals, and again when I have finished exercising and have rested for 5 minutes. A typical or "healthy" heart will drop down to a resting heart-rate fairly rapidly once exercising has ceased.  (Athletes can determine often determine their fitness levels by watching how quickly their heart "recovers" after a workout... the body can be pretty  neat sometimes.)  Anyway, an article from Scientific American explains it better: "After exercising, a person's heart needs time to recover, or to return to its normal, resting heart rate. How long it takes for the heart to resume its resting rate is referred to as heart-rate recovery time. In general, people who exercise regularly, and therefore are more likely to have healthier hearts, have faster heart-rate recovery times than people who do not regularly exercise. So after a 100-meter dash an Olympic sprinter would return to a resting heart rate faster than someone who rarely ever runs."(1)
  • Lastly, did I mention I have graphs? Because I have GRAPHS!  So, while they use a pulse ox, I use my own heart-rate monitor for each rehab session just for my own purposes (and to check my HR throughout the exercise to make sure I'm staying in the right zone). Below, I've posted two graphs that were taken, very nearly, one month apart. Take a look at the appearance of each. 
February 3rd, 2017 -  (The huge dip 3/4s of the way through is my phone's momentarily losing connection to my heart-rate monitor. That or I saw a cookie and briefly exited my body in order to go get it.)

February 3rd, 2017 - (The huge dip 3/4s of the way through is my phone's momentarily losing connection to my heart-rate monitor. That or I saw a cookie and briefly exited my body in order to go get it.)

March 1st, 2017

March 1st, 2017

In each graph, my max heart-rate was about the same, but the consistency of my heart-rate is what caught my eye. In February, there were highs and dips all over the place, especially when I was getting into my Base Pace (the yellow). However, the more recent one from March, my heart-rate stayed pretty consistent regardless of whether I was doing my Recovery Pace or my Base Pace.

So, while it's hard to determine if I'm feeling much different physically/symptom wise, it's nice that things are potentially improving on a "mechanical" level. 

Back to the center this Wednesday. Since my symptoms have been pretty consistent and minimal, they might try me walking for a little bit just to see how my body and heart react. Though the recumbent bike is helpful, and especially nice on the more POTSie days, I'm excited to see if I can start adding in other exercises to help break things up a bit. 

 

 

  1. "Cardiovascular System Science: Investigate Heart-Rate Recovery Time." Scientific American, Bring Science Home. 13 Feb 2014. Web. 5 March 2017. https://www.scientificamerican.com/article/cardiovascular-system-science-investigate-heart-rate-recovery-time1/

Week 5: Day 2

For the most part, I've been surprisingly able to scrape together enough motivation for rehab days. I think a lot of this is because they have made sure I don't go overboard, run myself into the ground, and get my ass kicked by the mind-fing fatigue. But man, today? Today I am cranky. Weather is all wonky, my period just ended, I'm tired, have had no focus in order to write or do anything creatively productive. And all I can think about is how MUCH TIME it takes me to do EVERYTHING. How I want to speed up but I can't—at least, not without fantastical bodily repercussions. I can't write this damn book any faster even though it's been years; I can't pedalpedalpedal through this program any quicker to the end of it/possible new quality of life; I can't take my sweet, darling dog on all the long walks she deserves and has missed out on over the last 10 years of this crap.

But it's not like I can slow down, either. Because that would just add to all the time it takes to do everything. Because then I would just be sitting still. Wouldn't I?

I try to take things as they come. To understand limitations and the reality of my situation. That things will happen when they will. And I'm usually pretty OK at keeping this viewpoint at the forefront. I have to be or else the stress and worry and emotional turmoil of it all would just exacerbate my body and nervous system and I'd wind up even farther back in my progress. But goddamn, is it frustrating.

So while changing my expectations and not perseverating on things has been a HUGE component of getting my health where it currently is, I have been flop-moping around the house all. freaking. day. Protesting and procrastinating on today's rehab like a champ because if there's one thing I can do other than throw silent, pissy tantrums, it's procrastinating.

But, the thing is, I know I'm gonna do it. Hell, I'm looking for my workout pants right now as I complain. Because what other option is there? Sure, if I couldn't physically do it today, that's one thing. But my pain is currently manageable. My fatigue, although present and accounted for, is no where near the shitbucket levels I've had in the past. So, really, what other option is there? I've already tried all the other stuff. I've tried not working out, not hydrating, not doing the bajillion other things I need to do daily. And I know where it gets me. So yes, while everything takes far too long and days (like today) I feel absolutelyfuckingcertain I will never accomplish any of my dreams, it's still happening right? I'm writing intermittently but I'm writingish. I miss soccer something fierce, but I'm exercising three days a week. Granted, it's low-level intensity compared to my full-on athlete days but, I mean, the last time I did any form of exercise three times a week was more than a decade ago. And Niyabear still isn't getting all the walks she deserves, but god am I trying.

And yet some days I can't help but think how nice it'd be it were, just, more. If #RareDiseaseDay was just the ONE day—where we can post all these infographics and things about POTS and then forget about it the next day like everybody else. But no, #RareDiseaseDay is every single day. And shit, I am still doing it. I have been doing it. And I will do it again today—not with a smile on my face or ounce of hope in my chest, but fuck it if I'm going to give up now. If I'm going to give up ever. There is too much I want to do. Too many walks I want to take with my puppy and too many things I want to see and and too much life I want to live. So if my choices are it all taking years upon sodamnmany years vs. never getting any of my dreams at all, then you can find me and my cranky ass pedalingpedalingpedaling away on this stupid, infuriating, and ironically-stationary, bike. Because, even though I may not be going as quickly as I would like, I'm still going. 

Levine's POTS Exercise Program: Weeks 2, 3, & 4ish

So, I wrote about Week 1 a bit ago here and have one more day left in Week 4. I'm at 37 minutes of continuous exercise (with intervals) on the recumbent bike and am still managing OK as far as I can tell. Again, like I mentioned in the first week, I'm still tired the day after, but nothing nearly as much as I expected.

In fact, the biggest thing I've noticed is that I'm doing a little bit more here and there around the house. Whether it's because of the exercise is, of course, hard to determine. But there have been a couple of days where I have been able to do two or three more chores than I normally would be able to. Which, if you have a chronic illness, you know is like... HUGE. Like, I put the dishes away the SAME DAY I made dinner?! WTF is this alternate universe?!

So, I am tentatively hopeful. I am not expecting a cure-all, like I have mentioned before. And I am still fatigued, as well as other POTS symptoms. But I guess I have reason to hope. Or, at least, an avenue to hope—so I reckon I'll take that when I can, yeah? 

Couple things before I forget: they are having me practice static standing in order to see if the exercise is helping. So seeing how long I can stand (next to a bed, of course) before symptoms occur and without shifting my weight/feet. (I'm not suggesting you start doing this!!! It was/is just an interesting thing to me.) POTS man. I had someone else try static standing and I said, "How long do you think you can stand like this?!" and they were like, "Um... a while."

A normal response to standing is such a foreign concept to me sometimes. The fact that they just STOOD there for a while was, like, frigging witchcraft to me.

The second thing, that I think is super exciting! I have learned that the soleus muscle in the leg helps with blood flow!  So, on the days I do weights, they are having me do soleus strengthening exercises which—guess WHAT!?—can be done sitting!

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

Picture of what I'm doing to strengthen my soleus that I borrowed from Runner's World.

As it is with the cardio side, they are keeping my core/leg weight training reps on the low end to make sure I don't overdo it. (Please check with your doctor before you do anything you read here, or anywhere else. POTS is so different for every person and what can be helpful for one can be detrimental for another).

Anyway, I'm tired, so hopefully all of that is, at the very least, somewhat coherent. As I explained in my initial post, I can't give away specific details of the program, but I will try to share information as best I can. I truly hope these are helpful.

In the meantime, take care and heads-up when you can. I was bed-bound for two years, sleeping 20 hours a day, and I never thought I would ever get this far. <3