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Posted by on Mar 13, 2018 in Bioethics, Rare disease | 0 comments

When you think you can’t (13.03.2018)

When you think you can’t (13.03.2018)

This is the winter version of what my “out of the office, without access to email or voicemail” message means, at work.

Today’s adventure was snowshoeing up – and then back down! – a mountain. 7.2 miles, or 11.5 km, round trip. About 6 hours in wilderness conditions, in a winter snowstorm, with my husband. For fun, and for a challenge.

photo of a woman snowshoeing down a slope, in a wintry forest

Photo: Sandra Woods

Perhaps more of a challenge for me now than ever before, because a Colles’ fracture (snapped bone, above the wrist) 2 years ago triggered an invisible & rare disease. A condition that continues, and that might be permanent.

Complex Regional Pain Syndrome (CRPS; also called Reflex Sympathetic Dystrophy or RSD) tends to target the extremities, but it can spread. In my case, the right hand and arm are affected. CRPS causes excruciating neuropathic pain, joint problems, and a host of other health issues.

This means that all of my regular outdoor activities are much more difficult – and painful – for me than ever before. More challenging. But these outdoor activities are also very important to me; in many ways they define me. So I continue to challenge myself – and to surprise my medical and physiotherapy teams – by doing these types of wilderness sports.

Sometimes, like today, that challenge means telling myself – repeatedly – just 20 more steps. Then 20 more. Then 20 more…

Moral of this story = Believe in yourself, and you might be surprised at what you can do. When you tell yourself you can’t do something, that becomes a self-fulfilling prophecy.

Even with a chronic illness, chronic pain, a rare disease, there are often things you can do. What’s important to you? What are you willing to do, to be able to try to do it again – that activity you love?

We all tell ourselves “I can’t” far too often… What I’m suggesting is to sometimes instead ask ourselves: “What if I could…?”

And if you’re a healthcare professional, ask yourself: “How can I help this patient – this person – do what’s important to them?” Whether what’s important to that individual is doing wilderness sports, or baking, or driving, or any other activity they cherish(ed). How can you help them attain those goals, when the medical or physical obstacles seem… insurmountable?


As always, thanks for reading; if you have any comments or suggestions, please post them; I’ll try to moderate them within 24 hours.

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