The Spondyloarthritis Wall
The Berlin Wall came down the night before my thirteenth birthday! Yes, I'm a lady of a certain age. I had a pair of parachute pants and two sets of painstakingly hand copied lyrics of "99 Red Balloons." The thing about walls is that they're there to keep one thing out and some other thing in.
Fatigue and frustration are essential elements of the spondyloarthritis wall. This wall doesn't have any tanks, soldiers, or physical bricks, but it's big and heavy. It's big because it involves every aspect of a patient's life and heavy enough to freeze us in place, far away from the relationships, achievements, and personal choices that ought to have been ours.
Fatigue is my most frustrating spondyloarthritis symptom because it packs the double punch of being debilitating and misunderstood. On paper, it makes sense that fatigue is a serious barrier to patients living their lives, but the word is imprecise. People hear something like tired, worn out, or maybe limp or sagging. Those ideas are part of fatigue, but they also imply something reversible or negotiable. Intuitively, we know that tired people should rest and something should be replaced if it's worn out. But there's not much to replace with fatigue. Patients with a 24 karat gold treatment plan can wake up from a full night's sleep fatigued.
At its worst, fatigue converts me from a living person into something like a gargoyle or paperweight. It feels like a disanimation process takes over my body. Holes are drilled in my feet and soul, so that a vampire can drain out all of my energy into to puddle just a few feet away, but I can't reach it.
Mentioning fatigue to Muggles usually doesn't go well. They'll advise rest, exercise, some herb to gnaw on, or a more positive attitude. They don't get that we're just as frustrated as they are when fatigue disrupts life. It takes everything I have to hold it all in when somebody flings those magic words in my face, "I guess you don't want to."
It's hard to accept
Frustration is a common thread through experiences with chronic illness disability. It lives in that space between how we are and how we're expected to be. 2020 is my 19th year with arthritis, but part of me still hasn't accepted that some invisible entity has the remote control for my body. I know that the disease is real and prone to popping up at the worst possible moment, but that doesn't erase the huffy lightning bolt of frustration hitting me right in my core.
It goes something like this:
Me: I'm going on vacation!
Arthr: That sounds fun.
Me: Be quiet!
Arthr: Quiet isn't my thing. The window seat was a great choice! Here, it's time to celebrate. How about some stabbing pains?
Me: I've taken all my medications.
Arthr: We'll start with the midback, move to the pubic bone, and refer down the thighs.
Me: Why are you like this?
Arthr: I think you know why.
It helps me to remember that nothing is forever. Fatigue and frustration feel big and heavy, but they're also temporary. Maybe give our special song a try, but cool it with releasing the balloons.
Do you use the word disability to describe your AS?