I’ll begin with the ugly. I am coming to the realization and understanding that AS is progressive not merely in terms of losing mobility, but in increasing pain! I wrote when I was diagnosed, “It hurts knowing that today” which was bad “is better than I’ll be tomorrow.” But we had hope. Biologics were meant to save the day! They were meant to slow it all down and reduce pain tremendously and you’d regain your life.
Here we are a year later and none of that has happened. I’m now on my second biologic and even with spring coming in, no reduction in anything. My husband was worried recently that at the trajectory I’m going at, I’ll not be in a wheelchair in ten years as he originally feared when I told him the diagnosis, but next year. I told him that my secret hope was that it was because it has been winter and I always had awful winter flare ups when I was a teen and adult and perhaps things would improve in spring and summer.
So far, that has not happened and that is on double strength pain meds. I feel stuck and extremely but internally distraught. I don’t start limping after a few minutes of taking a walk anymore. I go walk even though I’m limping. And stiff. The stiffness is new. It’s as if my right leg is being held together at the pelvis not by a joint, but by concrete and I have to force my leg to swing forward. When people stared at me when I could tell they are being like ‘the Karen’ and thinking I shouldn’t be parking in the disabled bay, I exaggerated my limp but I don’t need to. It’s there and it’s real and anyway, I needed to be closer to reduce how far I travel, not because I’m broken.
I’ve realized that whether I’m lying down, seated or walking, no position reduces the pain anymore. Lying down used to reduced the pressure on my SI joints. Now, there are so many painful bones that lying down makes no difference. Though it might help with the persistent fatigue.
Basically, my new normal is ever present pain. Everything is done despite the pain. Everything is done while in pain. And nobody knows.
I’ll continue this another time. I stated that I’d “begin with the ugly” because I had wanted to mention something neutral about people’s perceptions of autism. I had much to type but my elbows and shoulder and fingers ache too much. I often think of retiring the blog. It hurts too much to type now.
A life devoid of real happiness because it’s clouded by constant pain, bad pain. That is me- now.
They said I should write a book 