Tag Archive: movement

Carin holding ice above her head in the water

Ice baths and cold river swimming

My name is Carin. I grew up here in Massachusetts, I was an avid backpacker and through-hiker, ecologist, explorer, traveler, dancer, and a hard worker. Now, I’m lucky if I can complete 200 steps in a single day. I was diagnosed with fibromyalgia in 2017, it is a chronic condition that inflicts widespread pain, fatigue,
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A selfie of Sherena, a brown-haired woman wearing a white, off-shoulder top

A tiger in a zebra’s body: coming to terms with my diagnosis

Denial: A tiger in a zebra’s body.  “Have you in the last three months installed a shower rail?”   I said, “No, but does a 6ft male count?” The nurse chuckled and said, “I’m being serious”, to which I said, “So am I”. From the outside looking in, I am a 43-year-old British woman living the life in Queensland,
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yasmin smiles at the camera as she climbs a rocky ledge

Rock climbing had held my joints together, until the pandemic came

From a young age, I had various injuries and health concerns. We knew I was hypermobile but this was never linked to any other concerns.  I began rock climbing at age 20. I had never been able to exercise without feeling self-conscious or ridiculed for my lack of coordination or ‘effort’ due to fatigue. But
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tess story

I will never let my pain or GI issues beat me

My name is Tess.   I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and body… of which my body is pretty defective. When I was 15 years old I hit puberty and my life was shaken up. I always
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Slowly but surely I’m stopping EDS from winning

For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered.   When it came to my muscles, they
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My awareness mission

My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious
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