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Posted by on Dec 22, 2018 in CRPS / RSD | 0 comments

Drifting (22.12.2018)

Drifting (22.12.2018)

I wrote yesterday that I felt adrift, after my family physician put me on medical leave for 2 months. Well, I still feel that way; just kind of… drifting. Not making any plans, not knowing what’s coming.

And still feeling that somehow I should have tried harder, or fought harder, or done… something. I don’t even know what I could’ve done differently, but nevertheless feel that I’m letting people down.

My doctor made me feel a bit better yesterday, by telling me:

You don’t have to prove to anyone that you’re strong, you’ve proved that since the day you drove home with the fracture that started all this. Your husband knows it, and I know it, and the specialists at the hospital know it. So listen to us, okay?

But, on reflection, that made me feel worse today. If I’m so strong, then I shouldn’t need to be on medical leave. But I’m trying not to think that way; I told him I’d try not to.

He knows me well, so gave me some good advice. For every workday that I’m on medical leave, he told me to get up early & go to the gym. Just as I normally would during the winter months, if I were working.

But instead of exercising for 60 to 90 minutes and then rushing off to work, I’ll do 2 hours of cardio. We know, from my summer (one-handed) cycling season, that cardio exercise helps with my pain. And sometimes with my other symptoms as well. So this seems reasonable.

The next advice from this evening clinic was to follow the 2 hours of cardio exercise with at least a half-hour of stretching; still at the gym.

Including 10+ minutes of stretches just for my hand and arm that are affected by Complex Regional Pain Syndrome (CRPS, also called RSD; for Reflex Sympathetic Dystrophy). This is to fight the shortening – and tightening – of the ligaments and tendons in my arm, which started a few month ago.

Photo taken in a sauna, of a woman's hand and arm

Photo: Sandra Woods

 

Once the 2.5 hours of cardio & stretching are done, I should use the gym’s dry sauna twice; for 5-10 minutes each time. The deep, dry heat of the sauna has apparently been beneficial to other patients with this disease.

Again, these suggestions seem reasonable. And, after a week or so, I might be able try to swim again – if the pool at my gym is warm enough. The last time I went swimming I ended up with a horrible flare of symptoms, but that was last summer; in a cold-water lake.

The pool at my gym is heated, so hopefully won’t trigger cold-related symptoms. Swimming has shown some good results for CRPS, so this also makes sense.

And the final bit of advice made me laugh. To simply plan on spending the entire morning at the gym, surrounded by people. To chat with folks, the way I normally do.

So that I’m not at home all day, isolated & alone, while my husband’s at work. My medical team knows that’d be the worst thing for me, to become isolated. CRPS carries a suicidal ideation rate of up to 73%, so mental health is always a concern when treating this disease.

So that’s what I did on Friday; I spent the entire morning at the gym, then met a friend for coffee before going home. It felt so strange not to rush off to work after an hour, or 90 minutes. People I know kept telling me that I was running late!

Why this strange advice, or ‘prescription’? My family physician & I both train at the same 24/7/365 gym. I’ve been going there in the early mornings for more than 20 years now. He’s been working out there almost as long, but in the evenings.

He knows that there’s a community vibe at our gym, between the ‘regulars’. That it’s a “good” place for me to be, around people who care about health & in an atmosphere centered on exercise rather than gimmicks.

Exercise has long been part of my disease management plan, as far back as June 2016. So during my medical leave, we’ll be ramping it up; to see whether increasing exercise can decrease any of my symptoms, or their severity.

I’m really hoping this will work, because if it doesn’t then I’m not quite sure what the alternative would be. I seem to have exhausted all of the treatment options; medications, nerve blocks, infusions… but the symptoms are changing, getting worse.

My husband’s off during the holidays, as I would have been, so I won’t be testing out this new action plan on a daily basis yet. But I plan to be back at the gym on Monday morning, and a few more times before he goes back to work. To ease into this new plan during the holidays.

On that note, all the best to you & your loved ones for the holidays – whichever holidays you celebrate!

A decorated Christmas tree, with a lot of wrapped gifts under the branches

Photo & image: Sandra Woods

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