Managing RA in the Wilderness: Try Googling that phrase. Go on, I dare you. See if you get any useful information at all.
As a child in South Africa, I was thrust into a life of adventure and I have loved it ever since, leaping at the opportunity to ‘get out a bit’ and see this beautiful world. It became a part of my part of my personality and adventure seemed to seek me out as much as I it.
I stopped getting out as much after I got sick, after my first experience of a “Nine” in a billowing orange tent in Wyoming as my wife raced off to Jackson Hole to call our doctor for some kind of anything to help my writhing agony. It’s one thing to go through a flare in your own home, and another thing entirely to be 60 miles from the nearest county doctor under a bivvy in a rainstorm and feel that dread sensation coming on.
For years I settled for car camping and cozy home weekends until the depression of RA started getting a good foothold in my soul. I yearned to be out under the stars, away from everything. I hungered for the ‘reset’ that the wilderness offered and the meaning that it infused into my life. I was willing to gamble to gamble that I could manage, no matter what happened.
On a whim I bought a used canoe and invited another guy on a week long trip down the Desolation canyon portion of the Green River in Utah with the logic that even if I couldn’t walk, the river would be carrying me. Ha!
It turned into a grueling survival ordeal, my paddle partner and I not working well together, a flare forcing me to duct tape the paddle to my hand every morning, sitting up through the nights with shoulders screaming, swamping repeatedly in Class IV rapids way too big for a canoe, snow, trench foot, a 15 mile hike in sandals… but it was wilderness. And I survived! Yeah it sucked, but it was one of the wildest weeks of my life. I slung my ass over the edge, and dragged it back again despite everything Nature and my body could throw at me. I was exhilarated, which felt like Heroin after all those years of slow deteriorating bleakness.
I tried caving but backed off when it looked like cavers might be spreading White-nose Syndrome, a fungal disease deadly to bat colonies, and took up canyoneering instead. Now here was a sport that fit all my criteria; exciting, outdoors, beautiful and best of all…downhill (mostly).
There is no such thing as canyoneering for the disabled. It is a rigorous ‘sport’ that requires every faculty and ability in descending sharply eroded watercourses, rapelling in waterfalls and over cliffs and getting out at the bottom. It is simply ones body and a unique series of obstacles in spectacular unspoiled environments. And yet I am hooked.
My solution initially was to get in and out a canyon before a flare hit. Invariably the exertion would trigger my body, and that was it. One and I’m done. Then I started packing an arsenal of painkillers and steroids, frontloading with Ibuprofen and hydration, and trying to get into some kind of physical shape so that I could do increasingly difficult canyons. Canyons are graded on a fairly complex scale that factors in average duration, technical difficulty, amount of water and danger quotient, and I was not content being limited to 3BIII’s.
Key to my strategy are my team mates. These are guys I trust my life with, literally. I hang on their rigging and they hang on mine. At 300′ off the deck I have to know that they did it all right and that I can enjoy the view. They all know the crapshoot I bring to their game, and yet they remain willing to haul me out of a remote and difficult place should the need arise, and I trust them to do that.
Otherwise I manage my RA much the same as I would at home: Manage my stress, eat well and stay hydrated, rest, Ibuprofen upon signs of strain and Norco upon signs of pain, Prednisone burst for unrelenting pain. Meds can buy me anywhere from 3 hours to 2 days of mobility, and I always carry enough food, water and shelter in my pack for 2 days should I have to hole up and wait for the worst to subside. I often have to push through pain, and it only leads to more pain later, but that is a trade-off I make gladly to enjoy what I enjoy. I wont be able to do this forever, so I’m doing it while I can, as I can.
Don’t let RA stop you.