RSD is kicking my butt this week. I’ve been asked what RSD is, and this is an essay I wrote several years ago, and was in Chronic Pain Association of Canada newsletter at that time. RSD, Reflex Sympathetic Dystrophy, aka CRPS Complex/Chronic Regional Pain Syndrome, is a severe chronic pain disability. You can read more about the medical aspect here.
Dancing With The Dragon RSD
There’s a dragon living in my arm. Its scales are made up of broken jagged glass and razor blades. I can visualize the scales so clearly, made up of the old green Coke bottles, glinting and glittering with malicious intent. Sometimes, the dragon is quiet, only moving restlessly in its sleep, breathing its steam breath. Even just by being present, the scales dig and rip at me, the steam blisters…And the restless dreaming is the best I can ever hope for. Then there are the other times, when the dragon is active. Twisting and turning, its tail wrapping around my wrist or shoulder or elbow, and then dragging its tail away, leaving behind the tearing, burning sensation as the tissues and joints are shredded and splintered. It breathes fire everywhere, and each place its scales and claws touch, my arm is being torn, ripped, burned and charred. This is my ‘normal’.
Then there are the really terrible times. The dragon is angry about being trapped in my arm and wants out. It writhes in fury, clawing, biting, ripping and tearing, while trying to set fire to burn its way out.
These sensations are so real that I look at my arm, expecting to see the jagged glass trying to push through my skin. If something doesn’t calm the dragon soon, I know from experience that my brain will be come a red haze, unable to think, and my body a curled, shuddering mass, huddled in the corner, reduced beyond the ability to form words. My throat utters the moans and cries of an injured animal, driven beyond the point of any coherency or humanity as the dragon tries to rip me apart from the inside out.
There’s no escape. Not for the dragon, or for myself. Each day brings uncertainty, never knowing how it will be in an hour, that afternoon, that evening.
I know that the dragon that is RSD will never completely go away. I do have hope, and prayer, that in time, the scales won’t be so jagged, the fiery breath tempered, and perhaps times when the dragon sleeps solidly and dreamlessly, for hours, days, even perhaps weeks at a time.
That’s the hope that I focus on, that I pray about and for.
That was written in 2009. I’m sorry to say that things haven’t changed. Every day is about how much pain, not if there’s pain.
But, I keep hoping. I keep doing the best I can, and refuse to allow RSD to rob me any more that it already has. I can’t predict or control pain flares, but I can control my attitude. Thank God for that.
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