Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Clarifying

Written by Katie. Posted in Ehlers-Danlos Awareness, Physical Therapy, POTS Awareness

As I think about the post I just published, something is bothering me.  I feel like I need to back up a bit, because I feel like I made “exercising” with POTS and EDS sound like such a simple thing to do.  And if you have POTS and/or EDS, you know that it is definitely NOT easy.

If I had read “I Exercise So I Can Stand Up”, when I was first diagnosed with POTS, I would have thought to myself, “That’s all well and great for her, but how do I get to a point where I can even sit up without being too dizzy to exercise?”  Honestly, I would have probably became a little frustrated with the post, asking myself, “How is she able to exercise, when I have to crawl from room to room, and I am in a wheelchair the majority of the time?”

I just want to clear something up.  After I was diagnosed, I was not able to stand and exercise like my post may have made it sound.  My doctors told me it would take a lot of time and dedication on my part to work up to even standing for a few minutes…And they were right.

When I first started, exercising for me was mainly done on the floor.  I would do some glute exercises, some leg lifts, some stomach holds, some back stabilization exercises, and some exercises sitting down on my exercise ball.  I remember thinking that standing up to exercise was out of the question for me.

When I started taking Propranolol and wearing my heart watch monitor and compression stockings, things began to slowwwwlllly improve.  I gradually began to be able to stand for 1-2 minute bursts to do some kind of exercise.  Leg strengthening was also key for me in the beginning (during these brief minutes of standing)~ toe rises, wall tilts, and squats.  Dr. Grubb and Bev taught me that strengthening my leg muscles would be crucial in helping to pump my blood to my brain.

I found this to be true.  As my leg muscles became stronger, I began to feel less sick.  Soon I was able to exercise for 5 minutes standing up.   Then 10 minutes, and so on.  It took a good 9-10 months of working my way up until I was finally able to even think about doing a few minutes on the elliptical and treadmill.

When Dr. Grubb and Bev started me on Midodrine, I found that the Beta Blocker (Propranolol) in combination with the vaso-constricter (Midodrine) helped me to turn a corner in order to begin to increase my cardio time.  Just this week, I was able to walk on the treadmill for 35 minutes.  It took me 14 months of non-stop rehab to get to this point.

So basically, I just wanted to make it really clear that exercise has not come easy.  It has been a process where I have often felt that when I take one step forward, I take two steps back.  In addition, it has been a slow, often painful and sickly process; one that I have had to carry out with the assistance of medicine, consistency, compression stockings, a heart rate/blood pressure monitor, lots of fluids, great doctors and therapists, a wonderful support team, a lot of naps and rest in between, and a whole lot of faith.

I just want to end by making this very cliché, yet powerful statement:

It’s important to never, EVER give up.

“I may not be where I need to be, but at least I’m not where I used to be.”

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Comments (2)

  • Mada

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    John “The Penguin” Bingham is an icon in the running community. He started running as an overweight, sedentary 43-year-old, and has since finished over 45 marathons. His most famous quote is about his first race: “The miracle isn’t that I finished. The miracle is that I had the courage to start.” I thought of that quote when I read this post. Katie, you had the courage to start, and that’s the most beautiful thing. I hope your example inspires others–the ill and the healthy–to find the courage to start. Love ya!

    Reply

    • Katie

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      I want to meet that man! What an awesome story. Thank you for your words. They brought tears to my eyes; especially since they came from you. You happen to be one of my heroes.

      Reply

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