Diary of My Worst Flare-Up Ever

The worst flare-up of my entire life with ankylosing spondylitis started a bit over two weeks ago. It came on suddenly and with absolutely zero chill. It was the most aggressive, relentless flare-up — and it still hasn't stopped. So, here we are, from within the eye of the storm.

Pre-flare-up: Things were great

Before the flare-up, I was extremely active: biking a few times per week from downtown Manhattan all the way up into the 70s and 80s, doing dance 90s workouts on YouTube (MadFit is my favorite), and getting in about five sessions of HIIT each week (yep, burpees included). My mobility, strength, and energy levels were all on-point, and even though some squat sessions made my knees ache, things were good. I was unmedicated (except for diclofenac as needed), as I'm without insurance and I've been doing well for about a year or so.

Week 1: It felt like my sacrum had broken

One day, I woke up and couldn't bend, twist, or walk properly. Fatigue wiped me out, but the pain was much worse. It felt as though one side of my sacrum was jammed. Hip was stuck. Legs hurt. Whole back radiated pain at about nine level. I was sweating bullets, too.

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For the first few days, I treated it with Advil and Icy Hot. It helped bring the pain down to a seven, but not any less. I skipped all my plans and moped around my house. I let myself skip deadlines. Emails went unanswered. I took hot showers, sometimes twice a day. I watched TV a lot (What We Do In The Shadows is great for laughter despite the ridiculous pain). And I did some light stretching here and there. Mostly, though, I couldn't move. Overall, I just thought, "This is bad, but it'll subside."

I felt guilty —raging guilt—about not being productive. I couldn't stop thinking about my privilege — that I had the ability to work from home, and that I could just shrug off my duties. A few years ago I was working full-time in an office and getting sicker and sicker, so sitting around my house felt, well, bad.  

Week 2: It got worse

Not so fast. About a week and a half went by and it got worse. Mornings and nights were atrocious. I'm used to flares lasting a few days, but I'm not used to flares lasting weeks where the pain is a nine-10 on the pain scale. This monster just didn't quit, and no matter how many natural remedies, Advil, hot showers, stretching sessions, heat wraps, or Icy Hot I used, the pain would just come back. I started (and am) thinking about the next steps with medicine.

Sleep became impossible, and I'd either lay awake in pain or wake up from pain several times a night. I still haven't slept a full night. The sweat continued, too — even while inside, in the air conditioning, doing nothing. I had a low-level fever the whole time, my body full of inflammation.

One crummy thing that started happening (something I don't want to admit): I started getting down. I felt lonely, sad, tired, cranky. I reminded myself that I wasn't always going to feel sad — that I felt this way because I wasn't sleeping, I didn't have the exercise endorphins I was used to, and because pain is tiring. I repeated, "this is temporary" whenever I got overwhelmed.

The thoughts of "why is this happening to me?" took over and I had to stop and get some perspective. I had to remember how I handled flares before — and I even re-read my own articles on mental health. I started writing in a gratitude journal more often, and I made sure to give myself the patience and grace I would give someone else.

And the flare continues...

One of the big things I have been doing is gently moving as much as I can. I stretch, stand, walk a few steps, and do the extra things. The movement gets my blood flowing and helps. I turn to lots of gentle stretching and a few low-impact routines that get me moving. I do simple indoor walking on a soft yoga mat. I get out and got some sun daily. I take short walks. I've also been giving myself healthy foods, lots of water, and probiotics. And while I'm still in a flare, this is all helping me. A lot.

I lean into community (using our community and other AS forums online to share my feelings) and I was brutally honest with my partner about my needs. I told my friends what I could or couldn't do, and I canceled what few plans I did have.

Regarding the guilt I have over resting...I had friends remind me that this is what I worked and work for — the ability to take some time off. That it's okay to heal and not 'do' much of anything — especially as a destressing technique (we all know stress makes AS worse). It's a tough pill for me to swallow, but I'm working on it.

In the end, I don't see any sign of this flare dissipating anytime soon — so I've been conscious of my mental health and where I let my mind go. I've just accepted that this is it — this is my lot in life. If nothing else, it gives me a chance to be better to myself. It's okay to feel bad, to sleep, to complain, and to take action. All of it. It's a roller coaster.

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