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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