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/

Eating Disorders and the Transgender Community

With the recent political focus on transgender rights, as well as it being National Eating Disorders Awareness Week, I thought it important to highlight that past research has indicated transgender people may have a higher risk of eating disorders than any of their peers.

In 2015, the Journal of Adolescent Health, determined that “rates of past-year [self-reported eating disorder] diagnosis and past-month use of diet pills and vomiting or laxatives were highest among transgender students.”(1) More specifically, “[a]bout 16 percent of trans respondents reported that they had been diagnosed with an eating disorder in the past year.” That’s five times more than the next highest group which was “men who were unsure of their sexuality, who reported rates at 3.66 percent.”(2)

This is an alarming study in and of itself, but there are two things that have really stuck with me since. Firstly, the study was done via a survey of 289,024 students across some 200 university campuses. So while this is just a small sample size, one must also take into account that there may have been even more students than reported who a) were, in fact, struggling with an eating disorder but hadn’t been “diagnosed” and/or b) did not want to divulge that he/she/they had been diagnosed.

The second is that this survey was done two years ago. Rendering such an alarming result I would have hoped other studies would have popped up in my research, but any article I found only referred to the aforementioned survey in the Journal of Adolescent Health. I could not find any other study. And with eating disorders at such a high occurrence rate ("The National Association of Anorexia Nervosa and Associated Disorders states that approximately eight million people in the U.S. have anorexia nervosa, bulimia, and related eating disorders."(3)), more research is absolutely vital in understanding these mental illnesses (yes, eating disorders are a mental illness), especially within the transgender community.

Now, I am cisgender, so I cannot—and will not—speak to this personally. I do feel, however, that every single person’s story and his/her/their experience with an eating disorder is vital for so many reasons. One being a stark indication of how much more attention and research must be given to eating disorders and, two, the more voices we have, the more people can start to understand that eating disorders affect everyone regardless of their race, gender, sexual orientation, body size, age, etc.

Now, a number of articles I read surmised possible reasons transgender people struggle with eating disorders. I’m not going to do that because I, of course, don’t know. And, also, because I do know—first hand—how individualistic eating disorders actually are. The reason(s) for one transgender person who struggles can be completely different from another, and it is not ‘always’ or ‘automatically’ related to being trans.

Dan Maldonaldo, who works at T-FFED (Trans Folx Fighting Eating Disorders), cautioned against lumping trans folx into these growing ‘theories’, “I think when we report eating disorders in our community to medical professionals, a lot of times there's this arrogance or conflation of gender dysphoria with body dysmorphia." Dan says. "People think that once you're able to transition that your eating disorder will disappear. This is not the case. There's a lot of reasons why eating disorders are prevalent in the transgender community, but it doesn't necessarily have to do with the fact that we are trans and we have bodily issues that have to do with our gender."(4)

In short, this is an extremely important topic which must be explored and researched further. And, specifically, one to which we all need to listen. Eating disorders affect everyone in so many different ways and for so many different reasons, we need to give everyone's story a place in which it can be told. 

Eating While Transgender by Jamey Hampton

Finding Me: Looking Past the Surface to Discover My Transgender Identity by Ryan Sallan

(My blog is, by no means, a hotbed of internet traffic, but if you would like to add your voice/story to this, please don’t hesitate to email me. Additionally, I encourage you to check out Trans Folx Fighting Eating Disorders for further resources, information, and support.) 

<3
s.e.c

 

  1. "Gender Identity, Sexual Orientation, and Eating-Related Pathology in a National Sample of College Students". Diemer, Elizabeth W. et al. Journal of Adolescent Health, Volume 57, Issue 2, 144 - 149.
  2. Ford, Zack. “Eating Disorders Significantly More Prevalent Among Transgender People, Study Finds”. ThinkProgress, ThinkProgress. 4 Aug 2015.  Web. 28 Feb 2016.
  3. "Statistics: How Many People Have Eating Disorders?" ANRED, 2 Mar 2016. https://www.anred.com/stats.html
  4. McNeilly, Claudia. “Trans Youth Are Significantly More Likely to Have an Eating Disorder”. Health, Broadly. 1 Dec 2015. Web. 28 Feb 2016.

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

 

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