by Kerry Hussey
I’m 30 years old now, but was diagnosed with RSD/CRPS back when I was 13-years-old. I was one of the “lucky” ones, where it only took three months to put a name to what I was going through, but that didn’t make it any easier.
WHAT IS RSD/CRPS?
Complex Regional Pain Syndrome, CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.
It didn’t give me some miracle treatment or medication to make me all better. It was years and years of trial and error, until twelve years after my initial diagnosis, I found ketamine infusions, which allow me to get out of bed and go to work each day.
My friends and family fully support me. They understand that sometimes plans need to be cancelled because I’m in too much pain, or that plans need to be adapted so that I can still participate, just with less energy spent on the activity. I learned long ago that friends that aren’t supportive like this, aren’t my friends at all.
Last winter, I decided to take back a part of my life that had long since gone missing. I grew up skiing, but the RSD monster prevented me from continuing. So, after seven long years of not skiing, I learned how to mono-ski. I now sit down to ski, and though it still causes pain, the adaptations work for me, and I find that I tolerate the pain better than I ever could when I tried to stand and ski.
I’ve been able to learn from other amazing mono-skiers, and I’ve been able to spread awareness of invisible illnesses, because just looking at me, you wouldn’t think that I would need adapted anything, much less ski equipment. I was even awarded a grant this spring, so that I can purchase my own equipment, to keep progressing in a sport that I have grown to love! Best of all, after seven years sitting on the sidelines, I’ve been able to ski with my husband, our friends, and family. Those family and friends that support every choice I make? Yep, I get to make memories with them in the winter that I never thought I’d be able to make again.
Life with RSD hurts. A lot. Mono-skiing hurts, but it is a great form of distraction therapy, is fun, and is a great workout that I wouldn’t otherwise be getting, because of RSD. I look forward to next winter, when I can use my own mono-ski equipment for the first time, and really show RSD who is boss!