When The Pain Storms In Again
Ankylosing spondylitis (AS) lives in my body like a leaky pipe lives behind the walls of a rickety apartment. Every day, water seeps through, cracking the ceilings and staining the wallpaper. I can manage these droplets of pain. Sometimes, I even forget about the leaky pipe altogether. But behind the walls, AS is waiting to burst, cave the ceiling in, and engulf my body in pain. I can’t predict when this will happen; I can only deal with the subsequent wreckage.
I had a period of low pain
In March of this year, I experienced a blissful period of relatively low pain. My medications, exercise, and lifestyle combined harmoniously to reduce my symptoms, and I went the entire month without taking additional painkillers.
There were occasional spikes of pain, but overall, it was manageable. I danced, walked, and slept without much difficulty. Life was a luxurious, low-pain breeze. Aside from my injections every 10 days, there were few glaring reminders of my AS. But of course, it was too good to last. One morning in April, the pain barged in through the front door again, and I woke up feeling like my old, chronically ill self.
Then the pain came back
My AS symptoms were back, as bold and cruel as ever. Getting out of bed was like tiptoeing through a minefield — one wrong shift of weight led to another stab of pain. Accomplishing daily tasks was almost impossible, as standing for more than a few minutes was too much to handle. I had to lie down, feeling nauseated from the joint pain. Even though I had been walking and exercising with ease the day before, overnight, AS had changed its mind. I was reminded that despite the recent “good” days I’d had, I still had a painful chronic illness that could attack at any moment.
The flare-ups are horrible
Physically, these flare-ups are horrible. There are no stretches or painkillers that can dull the fire or take away my limp. Emotionally, it is even harder. During low pain periods like the one in March, I start to feel “normal.” I get used to the “good” life. I enjoy long walks and long naps, two things I can’t normally do.
The more of these “good” days I have in a row, the further and further I drift from my disabled identity, embracing any moment of “able-bodied” freedom with open arms. I suppress the chronically ill part of me — I smother it and silence it and pretend it’s not there. When the pain storms in again, I am quickly reminded that the freedom I felt was false. The pain seems to laugh at me and say, “Oh, you thought things would be good forever?” I snap out of my daydream and start trying to accept — all over again — that my disability is here to stay.
A diagnosis causes grief
Receiving an AS diagnosis leads to grief. But now, even two years after my diagnosis, the grieving hasn’t stopped. Every time I get a flare-up, I am forced to face reality once again and grieve my old self the same way I did after being diagnosed. Although I am grateful for every period of manageable pain, there are no guarantees with AS. Even when I’m doing everything “right,” a flare-up could come out of nowhere. I have to savour every “good” day, but be ready to drop everything and deal with the pain, whenever it comes.
Do you use the word disability to describe your AS?