I’m an Outdoor Enthusiast, Despite My AS
When I was first diagnosed with ankylosing spondylitis, I had no idea what that diagnosis actually meant. What sort of things could I still do with AS? What should I not do with AS? Would I have to give up some of my favorite activities and pastimes? For months, my thoughts flooded with questions, with doubts, with fear and uncertainty. I soon came to realize that only time would tell.
And days passed. And some of those days I felt mobile with only moderate pain, and other days my lower back felt like a rigid concrete block that someone was chipping away at, hitting nerve endings left and right. My symptoms would flare-up, and with time I could sense some of the warning signs. On occasion, I could attribute certain activities to flare-ups - 20 minutes on my exercise bike once caused a 3-day flare.
Over the years (early 2021 marks my five-year diagnosis anniversary), I’ve learned that living with AS means negotiating with AS, especially if I want to continue with some of the activities that I love.
Weighing the benefits and risks
Since childhood, I’ve enjoyed hiking and camping and most things that begin and end with immersion in the wilderness. I am an avid hiker and love tent camping. When my disease is well-managed, I can get out on hikes and camping excursions as long as I plan well and remain in-tuned to my pain and inflammation levels.
But I’m also realistic when it comes to my outdoor enthusiasm. Though I may glance enviously at backpackers we pass on the trail, knowing they may have just spent several days and nights unplugged along the trail, I know that can’t be me. Most days I cannot hike more than five miles, and I certainly can’t do so with a heavy load of gear strapped to my back.
I’m not a thru-hiker or a backpacker. In my opinion, that doesn’t make me any less of an outdoor enthusiast than the hiker who summits a 14er in Colorado. My hikes are shorter by design. As I hike, or while I camp, I am continuously calculating risk and reward, or comparing what I want to do to the potential consequences of my actions.
Hiking with joint pain
Low-impact exercise, such as hiking, is generally good for my back - to a certain extent. Exercise can be great for managing some of the symptoms of AS and maintaining flexibility. But there’s a fine line between beneficial exercise for AS and exercise that’s harmful or actually leads to increased pain. I know that pushing it too hard or traveling too far may leave me in pain for days, and that type of exercise is counterproductive.
My AS also affects my peripheral joints. The peripheral joints that are most bothersome for hiking are my hips, knees, and the joints in my feet. I often utilize topical NSAIDs before and during hikes to calm some of the pain in these joints, and on occasion strap on a cloth knee brace to help limit movement and control pain.
Tent camping with back pain
Tent camping with AS is a whole other beast because it has nothing to do with exercise and everything to do with sleep quality and the ability to get restorative sleep (I mean, is that a thing with AS anyway?). I have a fairly good-quality sleep pad, but I still sleep with it on the ground, which means I often wake with more back pain than I went to bed with.
Committing to tent camping also means committing to several days without all of the comforts and pain-relief tools I have at home. That means no recliner to resort to when all other seats don’t cut it, no heating pad, and no warm bath to soothe my aching joints.
For now, the benefits of spending time outdoors outweigh the drawbacks. I’d be lying if I said I don’t think about that day when I won’t be able to participate in the outdoor activities that I love. But for now, I’ll take what I can get, keep doing what my body allows, and try to keep those negative thoughts out of mind!
Does reading AxSpA patient stories help you in your journey?