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

I Exercise So I Can Stand Up

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

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I wish they had bumper stickers that said this.  Because it’s true.  Very, very true.

This is something I never thought I would say.  But that’s life.  It can change on you in an instant.

The funny thing is I have exercised pretty much all of my life.  I was a gymnast for 14 years.  I traveled the country competing with my very best friends.  I have medals and trophies in my basement that are evidence of my years as a competitive athlete.  But being a gymnast and exercising for 30 hours a week was my passion.  It provided me with a life of discipline, goal setting, and pure joy.  It never crossed my mind as something that was mandatory.

When my life as a gymnast came to an abrupt halt at 18 after a botched surgery, I continued to exercise, because that was the life I knew.  The thought of not being active was just weird to me.  I then made the decision to walk on to Michigan State’s gymnastics team for my freshman year.  Being a collegiate gymnast had been one of my lifelong dreams, and I wanted to see what would happen if I spent the year working with the team’s trainer’s and doctors.  So for that year, I rehabbed and rehabbed my butt off.  I lifted and did conditioning with the team.  But at the end of my freshman year, watching the team do the sport I loved from the sidelines had taken too much of a toll on me.  Knowing I still had surgeries and years of occupational therapy ahead of me, I made the hard decision to officially “retire” from the sport.

From there, and through lots of shrink appointments, I realized that working out was a way to not just keep my body healthy, but to also keep my mind healthy.  I found that I actually liked the elliptical and treadmill, and these machines were a way I could exercise without having to use my arm.

Then, like many brides, I made it a goal to lose weight before our wedding.  I traded in my elliptical workouts for running workouts; both outside and on the treadmill.  I ended up losing 20 pounds, and falling into a love-hate relationship with running.  It wasn’t before long that I wanted more.  I wanted to compete again.  I started to run 5k’s, and surprised myself that I did as well as I did.  I even won 3rd place in my age group at my first race.  The high of crossing that finish line was enough to get me hooked.  From there, I decided that I wanted to push myself even more, so I started to train for a half-marathon.


As I increased the intensity of my workouts, I began to have more and more back pain.  I also noticed that with the back pain, came a lot of GI issues.  My belly would become so distended after runs, that I looked pregnant.  I’ll never forget one appointment at Urgent Care, where the doctor walked in and said, “Awww, let me guess.  You are about 4 or 5 months pregnant?”  I cannot even begin to tell you how many prescriptions I was given for GoLytely to clean out my stomach.  I still have nightmares about that stuff.

So this is when I took a break to let my body rest.  I had learned from my years as a gymnast, that when I experience the amount of pain and discomfort that my body was experiencing, it is important to give my body time to rest and recover.

But as I have blogged before, this period of rest did not go as planned.  Whatsoever.

I got worse.  Much, much worse.  The pain increased tenfold, I started to have a lot of strange symptoms, and I became sick. Really sick.

I’ve decided not to go into the nitty-gritty details about the whole ordeal because that is not the purpose of this post.

The day I stepped on to a treadmill for the first time after taking a break from running, was in a cardiology office for a stress test.  Instead of running my 8 or 9 miles (which is what I had worked up to a few months prior to this), I ended up having to be carried off of the treadmill after a minute or so because I was starting to pass out.

Well, you all know what happened next.  I went on my doctor tour, seeing twenty-some doctors, until I was finally diagnosed with EDS and POTS.  After my diagnoses, it was then that my journey of rehab and learning how to manage both began.  It was also then that my whole mindset about exercise began to change.

Exercise is no longer a luxury that I have.  It is no longer something that I can pick and choose from week to week, day-to-day.  It must be my way of life now.  No excuses, no negotiating.  It boggles my mind to this day that all of those years I spent working out and keeping my body strong, was actually keeping my genetic, connective tissue disease hidden, which therefore prevented full-blown Dysautonomia to emerge.   Life sure is crazy.

As I sit here today, I can honestly say, without hesitation that…

I now exercise so I can stand up.

I now exercise so I can walk.

I now exercise so I can stay out of my wheelchair.

I now exercise so I can get out of bed.

I now exercise so I can work.

I now exercise so I can have a family one day.

I now exercise so I can function.

If that isn’t motivation, I don’t know what is.

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