Living in a body with FOP is like being forced to ride a completely different roller coaster every day with no time in between to catch your breath. I never know when the next drop (unexpected flare-up) might be, if I’ll stop going in loops (seemingly never-ending pain), or if it’ll be a smoother ride for a while. At the end of each day I’m often physically exhausted from just trying to survive. A more active season of FOP brings an additional level of uncertainty and a fear of possibly losing mobility once a flare-up subsides.
There’s no explanation for the spontaneity of progression, only what it’s doing to my body: growing new bone where it doesn’t belong (my muscles and connective tissues). My most recent flare-ups, primarily my left hip, lasted for five long months. The majority of these months were spent on the couch or in my bed, alternating between ice and heat for minor relief and being frustrated when the pain medication I had didn’t take the edge off.
My hip flare-up eventually abated, but I immediately noticed a change in both my posture and my gait. I’m now unable to stand with both feet together unless I bend my left knee, and I have a slightly more noticeable limp. I also can feel the extra bone that formed over my hip joint and hamstring muscles. Being able to physically see and feel how FOP has affected my body is disheartening and difficult to come to terms with. I always seem to be grieving the mobility I’ve lost, as well as for the future. FOP never ends even if it decides to randomly take a hiatus.
I still have sporadic pain and need to take breaks during the day to rest, but the higher intensity flare-ups have quieted down for now. I’m enjoying being able to do various things that I’ve missed, like making my own meals, washing the dishes, working at my computer, and getting together with friends. I’m trying to take it one day at a time because I don’t know when the pain will return. It could be a day, week, month, or several years before another serious flare-up. Since FOP is out of my control, all I can really do is pray for strength to make it through the debilitating pain and roller coaster-like drops.