Movement and Activity

When I was diagnosed with hEDS, one thing hit me harder than anything else: I have one shot. While some people can make the choice for healthy living at most points in their life, for someone with Ehlers-Danlos Syndrome, every moment counts. The more we delay, the more we suffer later. As a small business owner, a housewife, a step mom, and a type A personality, taking time for myself has always been difficult. It took a while for me to align my ducks (aka overcome my excuses), but then I started dedicating time for my body every day. 

Though some days are more productive than others, and I have to constantly remind myself that my abilities will always differ, making this effort has proven to be the best thing I could have done. A daily dose of Endorphins, which boosts mood and reduces pain, has reduced the symptoms of EDS. While this is a “duh” from those with a great fitness routine and no chronic pain, it’s important for other Zebras to hear. Often the pain overcomes the mental desire, but the pain can’t be managed without better muscle strength, and tada! You have a vicious circle.

To fellow Zebras: if you are planning on any form of exercise/movement, stop putting it off and do it. The first month is the hardest. Start simple, find something you enjoy doing, and keep doing it, everyday. It will be hard, you will have to show yourself a lot of grace, but the hard work will pay off. Appreciate your body and embrace what it can do. 


Ways I stay active (with modifications): 

  • Standard exercises for building strength (squats/plank/push ups/lunges/etc.)
  • Lifting (light) weights
  • Fitness through the Oculus Quest 2 (all Zebras should try this!)
  • Yoga
  • Dancing
  • Walking
  • Having a standing desk

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