LindsayThis is Part 1 of what will probably be a two part post about deconditioning and exercise. Hope you’re in the mood for a science lesson 🙂
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“POTS” is kind of a stupid name for an illness. There, I said it. I’m sure you were all thinking it.
I’ve noticed that when I comment on Twitter about having POTS, I get at least a few followers whose profile contains a picture of a big fat marijuana leaf. My condition has nothing to do with marijuana, or cookware for that matter. So, stoners and Martha Stewart wannabees, I’m flattered, but you’re going to be sorely disappointed with this site.
My preferred name for my illness is “spaceman’s disease”. Â Astronauts returning from prolonged tours in space often suffer from orthostatic intolerance immediately upon returning to earth. That is why when a shuttle lands back on earth, t.v. cameras don’t usually show the astronauts exiting the hatch and waving – they probably can’t even stand up. Astronauts are typically carried offboard the shuttle.
Because the force of gravity is much less in space, astronauts’ hearts do not have to work as hard to circulate blood throughout their bodies. As you may remember, gravity pulls blood towards my legs and my heart has difficulty counteracting gravity to get the blood back up to my upper extremities and brain. This is why I often feel lightheaded when standing and why my legs often appear red – I don’t always get enough blood to my brain because it is pooling in my legs. Without gravity pulling the blood down, my POTS would probably be nonexistent.
Cardiologists believe astronauts’ hearts shrink in size and blood volume decreases after weeks or months in space. Â They essentially have temporary POTS, although I’m not sure if they experience all the symptoms or primarily orthostatic intolerance. Check out this Wall Street Journal article for more info, or this article from ABC News. Â Although people have been suffering from POTS symptoms long before humans ever ventured into space, the illness was only officially named recently. Therefore, POTS is occasionally referred to as “spaceman’s disease” because it’s patients exhibit many of the same symptoms as astronauts (including awesomeness, of course).
Some doctors believe POTSies also have smaller hearts, like astronauts returning to earth, and that is how POTS also earned the nickname, the “Grinch Syndrome”, after the beloved Dr. Seuss character who’s heart was “two sizes too small.” However, I, as well as many of my fellow POTS friends, have had numerous echocardiograms (videos of my heart) and have always been told my heart is normal size. Therefore, I’m not a fan of the name “Grinch Syndrome” mostly because it is often inaccurate, and also a little because I would never steal presents from little Cindy Lou Who of Whoville.
In order to help returning astronauts overcome their orthostatic intolerance, NASA developed an exercise regimen that helps astronauts strengthen their heart, increasing its size and blood volume, and strengthen leg and core muscles, aiding in blood circulation. Dr. Benjamin Levine, a cardiologist at the University of Texas Southwestern Medical Center, worked with NASA to develop the regimen that focuses on seated exercises, including cardio workouts on seated rowers and recumbent stationary bikes, as well as strength training.
After realizing that there were hundreds of thousands of chronically ill individuals suffering from nearly identical symptoms as astronauts, Dr. Levine adapted his NASA exercise regimen for those with dysautonomia. I have heard mixed reviews as to whether his specific program cures dysautonomia, but there is little doubt that exercise can help POTS symptoms. But, how do you exercise when a major symptom of the illness is exercise intolerance? I will address this dilemma in my next post.
I’d like to start a movement to begin referring to POTS as “Spaceman’s Disease” because I think it makes me sound mysterious and worldly. Admit it, if I walked up to you and said “I have spaceman’s disease”, you would wonder if I am some kind of intergalactic traveler that defies the laws of time. Beats having people wonder how much marijuana I had to smoke to become ill.
To be continued…
“When once you have tasted flight, you will forever walk the earth with your eyes turned skyward, for there you have been, and there you will always long to return.” – Unkown
Happy New Year! Hoping you have a wonderful 2013!
Stay tuned.
– L
Good post Linds. I do think ‘spaceman’s disease’ would be a good name – go for it, let’s know how folk react.
Interested in your comment: ‘But, how do you exercise when a major symptom of the illness is exercise intolerance? ‘ How indeed. I’ve got the same problem – I need to exercise (to manage my Type 2 diabetes for a start), but there you go, I easily overload the (CFS depleted) system. I don’t think there is an answer except to creep slowly up, or close to your limit, then proceed very carefully.
Even that is no good really as your limit will vary day-to-day, and one day it will plunge and you will overdo things, relative to the decreased limit. Unless there is a way to tell that your tolerance level has diminished … I’m wondering if I know from other signs that this is so. Maybe gut feeling can help us here.
I’m a great believer in trusting gut feeling – I think it is an integral part of our reasoning and decision-making process. Where does the brain stop and the gut begin? They send signals to each other surely? I don’t think we use gut feeling enough, partly because in this regimented world we are in everyone wants data, measures, markers, reasons more concrete than ‘That’s my gut feeling’.
The longer I worked (45 years), the more I trusted gut feeling and feedback. Oh, I could write lots and lots on these subjects, whole fat treatises …
Are there other signs that our exercise level has dropped (or increased, for that matter)? I want to think about this and see if I can mentally track all these variables to find some signals and correlations. Problem is there are no easy ways to measure many of our debilities. Oh, what a bugger it all is, as we would say here n Australia.
I’ll see if I can come back with more thoughts here …
May 2013 be all you wish it to be!
Thank you so much for your comment! Trying to exercise with exercise intolerance is indeed a huge challenge, especially because many people with chronic illnesses were very active before the illness set in. I’m not used to having to develop a workout plan and consult with a doctor about it. In the past if I wanted to workout, I did. And, I did often.
I think the key is definitely to start out slow. Setting small goals, and stopping once they are reached, even if I feel like I could keep going. I’m not sure about you, but I often pay for expending too much energy days later. I may be able to exercise for longer than I thought, but I may also feel the effects for days, sometimes even weeks, later.
I’d certainly like to hear about any challenges you have and what works for you! Happy New Year!
I like this. Earth to Lindsay!
🙂
All well and good – IF you haven’t had 6 back surgeries and can’t physically use a recumbent bike or a rowing machine. Do, what’s left? Water exercise! My doc (Roy Freeman @ BIDMC in Boston) recommended it. However, I was BANNED from exercising at a hospital pool because of my autonomic condition. They SWORE that being in a warm pool was bad for anyone with low blood pressure….but then wanted me to do land-based PT consisting of ISOMETRIC exercise-greatly discouraged for people with this condition. I want to join the Y but fear doing so as my condition WILL cause me to get weak and cause panic among the staff (as i did at the South Shore Hospital pool). Basically, the only thing I can do is yoga and light weight stuff in my living room or walking with my neighbor or hubby. I just have to sit down frequently.
“Spaceman’s disease” wouldn’t fit my dysautonomia, as I was in pretty decent shape when this condition hit me like a meteor. So, for me, it really doesn’t have anything to do with deconditioning.
But I do agree, POTS is a stupid name for that particular type of dysautonomia!!!
You bring up a good point, Lori. I suppose “spaceman’s disease” wouldn’t accurately describe my dysautonomia either, as mine also doesn’t have anything to do with dysautonomia. In fact, the day before my symptoms started, I was in Washington D.C. for work and walked all day around the city. My deconditioning is due to my POTS, not the other way around. I still like the name “spaceman’s disease”, but perhaps a more accurate name could be found as well.
Funny and well-done. The giant pot leaf part cracked me up 🙂
Amazing post, so fascinating. Sharing!