A man rolling a large boulder with a happy face on it up a steep hill.

The 4-Month Flare

A recent flare up started in early November 2021 (it was March when I wrote this!) during the weekend of my birthday celebration in New Orleans (yep, I'm a Scorpio!).

It was Halloween weekend-—a weekend of revelry and magic. I was with two close friends and my partner Benjamin, and we had our costumes ready and our bubbly waiting to pop. We wanted to tell ghost stories and peruse the art and catch the second line bands marching down the street in the golden daytime sun.

I was busy with work leading up to our holiday, which meant I probably wasn’t taking the best care of myself before I left for the flight. It was only about 2 1/2 hours by plane, but something snapped. It was as if my body decided then and there to just give up on me.

The flare continued...

I’ve written about this trip before; ankylosing spondylitis completely ruined my birthday. From that point on, the flare continued, like some sort of beast that grew bigger and bigger until I felt like I was at the shoreline of a tidal wave.

I needed to take some time for rest upon returning, especially because I got the flu. It was as though my body told me enough is enough, even though I was already very limited in what I could. I waited sometime before traveling again, but I had to visit my mother upstate New York. The journey is seven hours by train, and if you have arthritis, you know that this sort of travel is a particular brand of nightmare.

By the time I got to her house, it felt like my sacrum was shattered into a million pieces and then replaced with something that didn't fit. That was early January. By mid-March, nothing had changed.

Each day is different

I have days where the pain is more or less manageable and days where I can’t walk more than 10 minutes without sitting down and stretching. Sleep became unbearable for a few weeks, tossing and turning onto one hip and then the other and then back to the other.

The fatigue, as with all flares, comes and goes. Sometimes it’s so debilitating I wonder how I ever got things done in the first place. Sometimes it mysteriously goes away so that I can’t function like a normal person, as though ankylosing spondylitis weren’t even part of my life at all.

This is the thing that confuses me the most about autoimmune diseases — how you can literally play two characters within yourself.

The flare-up hasn’t subsided

It changes shape every day, but something is always present. In a way, that’s what ankylosing spondylitis is: a never-ending journey through some level of pain or debilitation. The journey consists of the beast (the pain) and you, the hero, trying to make it. Or you're Sisyphus, constantly rolling the stone up the hill and back again.

This 4-month flareup is so omnipresent. It’s there every day. I can’t remember a day that I felt completely normal both physically and mentally. And that makes me sad — not just for myself but for all of us.

Sometimes I wonder if flare-ups should be described as flares at all, given that they've become the norm. Perhaps normal, high functioning days, are the rarity? Maybe they need a word?

I’m going to be starting Cosentyx soon, if my insurance approves it. Hopefully, this will reduce some of the flare-up days and help me find some semblance of peace again.

How long have your longest flares been? 

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