• By: Emily D.

Going the #DYStance

Last year, when it was time for DSN’s Virtual 5k, I was in a good place physically. I was able to do all of my PT exercises every day, and I built up my stamina. I worked up to riding my recumbent bike for 2 hours, walking up and down the stairs 10+ times a day, and taking up to 20,000 steps a day. I was elated. The more I accomplished, the more I pushed myself. I wanted to become stronger than ever. Unfortunately, it was not meant to be.

At the very end of November, I was suddenly struck with unbelievable pelvic pain. I’ve had pelvic pain before, and began pelvic PT in September of 2018 to treat it. But the pelvic pain I experienced November was far more intense and debilitating. I went peak physical ability to practically living my recliner. in June 2019, my pelvic pain got even worse, and I have been in bed ever since. I have needed help showering, changing clothes, getting food, and even walking a short distance. Just walking to the toilet or to refill my water bottle would sometimes leave me in tears.

I say all of this not to garner sympathy, but because last year, I published a piece about how I use the 5k to determine how far my fitness has progressed. In that article, I vowed to be even stronger this year than I was last year. At the moment, however, I can hardly move. So I will be counting the steps I take. Perhaps I will try to get more steps in on good days. One of our volunteers even took her steps in a hospital room with her bags of saline and antibiotics. The wonderful thing about this 5k is that you really can participate no matter your fitness level. 200 steps a day for the entire month of October will allow you to do a 5k.

Since our 5k is virtual, you can participate in whatever way you are able or would prefer to do it. You can do it all in one day. You can do it slowly throughout the month. There are plenty of variations, too! You can use your wheelchair, swim, walk with or without pets, run, or any other method that gets you moving. Walking around in your own home is by no means inferior. But if you are able to do it publicly in a group to raise awareness, that’s fabulous, too. If hosting a walk is something that you are interested in please let us know at fundraising@dysautonomiasupport.org.

The point is to get yourself moving and to let other people know about dysautonomia. Get friends and family members involved. Start a team and see how much you can do together. Ask friends to sponsor you for every so many steps you take or the distance you go. There are so many options and there is so much fun and self-esteem to earn. The trick is to do your best; don’t compare yourself to others or to where you were last year. Focus on where you are now. Everyone wins in our virtual 5k, and that is what makes it so special. There is no bottom or top, everyone is just where they are, doing what they can do.

Join the DSN Virtual 5k here. Read the Superhero 5k FAQs here.

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