I was such a show-off. Even well into middle age I would sometimes amuse my friends in the break room by tucking my ankles behind my head while my coworkers cringed.
I have Ehlers Danlos Syndrome and my joints are hypermobile. The genetic recipe for my connective tissue is defective, so my collagen is abnormal. I was born this way; it runs in my family. My tissues are pathologically stretchy and prone to damage and dysfunction. Because connective tissue forms my cardiovascular system and digestive system, I have issues with fainting and swallowing. Because connective tissue is throughout the body, I have issues with bruising, scoliosis, and fragile skin. The hypermobility, though. That was kinda fun, because it had sideshow appeal. “Look at what Bonnie can do!” Especially as a kid, when I was desperate for attention. I didn’t realize my contortions were inviting future disfunction and breakdown.
I have a small face and can wear children’s sized glasses. I would always buy Flexon® glasses, you know the kind with the twisty bendy frames. They are supposed to be pretty much kid-proof. A child can sit on them, drop them, step on them, and they are made of flexible components so they retain their shape. So I would show off my twisty bendy glasses to friends by and torqueing them to the limits of their flexibility. In time the glasses became irreparably crooked. Which was especially troublesome because they were bifocals: the reading pane was way down there on one side and way up here on the other side. I look back on my self in pictures and I look so goofy with my glasses always crooked and my brain befuddled from trying to make sense of my visual input.
And then I realized I had been doing the same thing with my body. I wasn’t diagnosed until the age of 55. And it wasn’t until I was much older that I realized that stretching my body beyond its anatomic and physiologic boundaries placed unnecessary pressure on my already stressed frame.
People tend to see hyper-flexibility is a tremendous benefit. “Oh I bet you are great at Yoga!” Yoga requires flexibility, strength and balance. Sure, I easily contort into many advanced yoga poses. But without first cultivating the strength and balance, extreme movements introduce wear and tear on my joints. Without the muscular strength to keep them in place, my joints subluxate (partially dislocate) from their sockets. Without muscular strength, my tendons begin to fray and tear. Without a strong core and supporting structures, I deal with chronic pain when one joint after another gives me issues.
I saw a Sports Medicine/Ehlers Danlos specialist, Dr Mark Lavallee, a few years back. He told me that exercise is medicine, and how well I will function in 10 years is directly related to whether I begin a serious exercise program now. He recommended a body building program, a high protein diet, and a lifelong commitment to fitness. I took his words to heart. I bought a used Bowflex and erected it on the basement. But I never learned to use it. I ignored his advice with a nagging guilt. I knew he was right. I just didn't like to exercise, and who has the time?
I continued using farm chores for exercise. Heft 50 pounds of feed, carry water buckets, shovel this, sweep that, move heavy cages from here to there. Every day kept my body moving and strong. But not strong enough. Not strong in the right ways.
So here I am with a partial thickness rotator cuff tear. And I need to do better at preparing my body for the long haul. I come from long-lived stock on both sides of the family tree, and Ehlers Danlos does not shorten the lifespan. It is entirely likely I will live into my 90’s, and what I do now will determine if I will be strong and able-bodied enough to live those years well.
Follow my blog, internet friend, and come along with me on my journey. We can learn together about how to best play this hand I have been dealt. And if you are one of the many zebras who struggle with the challenges of Ehlers Danlos Syndrome, we can take this journey together. Lets live better with Ehlers Danlos Syndrome.
Bonnie Gruenberg is a certified nurse-midwife, artist, author, photographer, blogger, and hobby farmer. She also struggles with the challenges of a chronic disease: Ehlers Danlos Syndrome. This blog is about leveraging health to build a satisfying life. Sometimes it means stretching to explore new possibilities. Sometimes that means changing activities when it is no longer safe to do something you love. But no matter your setbacks, it is always possible to have a multifaceted and rewarding life with Ehlers Danlos Syndrome.
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