Leaning Into Flare-Ups & Uncertainty
When the pandemic quarantine took hold, the reality of fear set in. Especially since I got sick in early March. I live in New York City, which became, suddenly, the virus' epicenter. Living here right now is like living in an empty, silent, once-lively machine with a thousand moving parts. Now, the streets are relics of an old-time, and as I walk down the street with the mask covering my face, I can’t help but feel the lack of everything that once was.
When I got sick, I simply hoped I didn’t have it. I contacted my rheumatologist who told me to go to the emergency room if my breathing got worse. I got better, thankfully, but my city got even sicker. I realized that I was lucky that I survived.
I took routines for granted
I also realize that I took my routines for granted. I work from home full-time now mostly because of ankylosing spondylitis, so I thought that the transition into quarantine life would be easy. Or at least easier. I have realized that not having choices is the issue.
Not being able to go to the swimming pool, not being able to take a walk in the park, not being able to simply go to the doctor – these are beautiful things that I now miss, and that played a big role in my disease management.
Losing the swimming pool was the number one hit. Not having to leave my apartment means that I’m not getting as much movement as I was. To make matters worse, my partner is unemployed and our future is sort of hanging over us, shrouded. This stress probably sinks in more deeply than I realize.
My body can feel the change in routine
My body is definitely feeling it. And judging from what my spoonie friends are telling me, theirs are too. In fact, I am currently suffering one of the worst flare-ups I’ve ever experienced. My back feels completely locked up — as if there was some sort of metal plate where my hips meet my back, and that metal plate is both tarnished and rubbed raw. I’ve even developed psoriasis on my face, mostly on my eyelids and cheeks. I have had an inexplicable rash on both arms, too.
This amount of uncertainty and fear, mixed with a lack of routine, has shown me how vulnerable and fallible my body really is. And that is both humbling and scary. I often think, "Why is this happening?!" or "Why do I have these strange rashes?!" as if I don't intuitively know the answer. Our bodies and minds processing so much change trauma — collectively and personally. It's no wonder everyone I know is having a flare-up.
I have to let go of what I can't control
But I don’t like to look at things as losses only. I like to try to find a silver lining because silver linings have gotten me through my most traumatic days in life. If I could take anything from this experience, it’s that I am not more grateful for what I had, and what I have. That I also have to sometimes lean into not having control, because even if I try my best, my body has other plans for me.
I am trying to lean into the pause and uncertainty of this pandemic. I am trying to keep perspective (what matters most is that the world gets healthy again) and grace. I am trying to accept that stress and change of course will make matters worse. That of course my body is responding to this situation.
It is temporary, I tell myself. For the world and for me. It doesn't make it easier, but it is a mantra that holds power.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?