Dealing With Loss of Routine In Quarantine
Since being diagnosed in 2017 with AS (but having symptoms for more than a decade), I've had a long time to think about what I need and what I don't need in my disease management process. And over the past nearly two months in quarantine, I've had some time to think about what works for me and what brings me a sense of balance and normalcy in quarantine.
I had a routine that worked
Before COVID-19 hit, I had a routine that really worked for me. It not only helped to minimize my stress levels — a massive factor in the way my flare-ups take hold — it helped me move. That routine was, looking back, so simple and so pleasurable. For one, I'd try to see friends a few times per week — usually at a poetry reading (I'm a poet, so this is a norm in my world) or over a nice long, talk-filled dinner.
I'd also try to write pretty often. As an author and professional writer, writing is intrinsic to my being. It's my everything. And when I don't create, I start to feel stifled, inauthentic, and disconnected. When COVID-19 hit, it almost felt silly to write; the world's suffering took over any personal desire to write, and I had to deal with that lack of impetus.
I miss my aqua workout classes
Lastly, before COVID-19, I'd take a morning or evening class (depending on my workload) at AQUASTUDIO, which is an underwater cycling and water aerobics studio. It was a place that symbolized community to me. I wrote for their blog, attended classes almost every day, and fell in love with their community.
I'd walk to the studio — getting movement in — and get into the water for low-impact but effective exercise. The water was an elixir, a balm against pain. On my most immobile, painful, fatigue-filled days, the water helped soothe me. I would take it at a pace that worked for me, and I felt good about that. The movement and the water got me to move, but it also helped me manage my stress levels (which further benefited my physical health).1 It was a literal endorphin bath.
Now that the routine is gone, I can't look forward to the walks or the water or the community. And even though they're doing Zoom classes during this quarantine — which helps me stay connected — the loss of the routine has really affected me on a physical and emotional level.
So, I've had to find ways to replace what was helping me manage my flares and my mental well-being.
What I've been doing
- Physical movement. I try to get some kind of physical movement in each and every day at the same time. It's nice to know that I'm setting aside 30-45 minutes of time to be in my bedroom doing whatever movement I can do in my space. This might mean dancing or following an online workout, but knowing that I'm making the choice has been really helpful. It doesn't replace what I had, but this is the new normal and I have to lean into it.
- Emotional wellbeing. One of the things I loved about my group cycling classes was the community, so now I try to watch YouTube workout tutorials with a high-energy group. Hearing people talk and laugh and connect with the viewers fill that psychological void. I also schedule Zoom stretch sessions with friends so that we can do things together. It seems awkward as hell, sure, but it's not a big deal once you get into it. Beyond working out, I've been working with my magazine, Luna Luna, to host online poetry readings. These are a fun way to connect, create, and hear another human voice. All in all, it helps to distract from flare pain, and the connection to humans is proven to promote wellbeing.2
- Creativity. Because writing is my life-blood, and because I've lost a lot of drive to actually write anything personal or long-form, I've decided to lean into embracing creativity for no "end-point." I journal regularly, and I write quarantine diary entries, which I share to Facebook groups. This writing is expressive and meant for healing and for processing — but it isn't writing for an "audience," per se. This is a way to turn to what makes sense to me (writing) without doing it for the reasons or in the ways I used to. There are countless studies that show expressive writing and art can help boost our wellness, so I take comfort in that.3
I hope that you can find ways to integrate and adapt your routines in this hard and lonely time. Comment below and tell me how you have!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?