What it Feels Like to Flare with Rheumatoid Arthritisby Lene Andersen, MSW Patient Advocate
When the pain is high enough, it is as if a very loud fire alarm is blaring right next to your head. It makes it hard to focus, hard to hear what others are saying, and it makes you as irritable as a bull facing a red flag. All you want is to curl into a ball and cover your ears with your hands, but it doesn’t block the pain.
My flare kit: painkillers, topical NSAUD, Zantzc for my stomach, a good
audiobook on my iPod, and sunscreen to protect my skin while I bake
my bones in the sun.
I visited that place again in the past week and not unprovoked. After working my bottom off all of May for Arthritis Awareness Month, I took a week off to sleep and recuperate. When the usual post-May crash and flare hadn’t arrived by Thursday, I thought I was in the clear. I wasn’t. It arrived Friday, making landfall in the way of a category four hurricane.
I don’t remember the last time I was in that much pain. I don’t remember that degree of being dizzy with it, of feeling like my eyes weren’t moving in unison, of my brain simply not being capable of focusing. I had a meeting on Friday and don’t remember any of what was said. As far as I know, it’s possible I signed up for joining a circus. We’ll know when/if the clowns come to get me.
Once, when I felt terrible about not being able to focus on a conversation, a social worker told me something that’s helped me feel not-mad since. She said that pain takes up a lot of room in your head, so there is less space available for paying attention to other things. I thought I was going crazy. Instead, it was the pain.
A flare like this is not just about the pain. It brings with it a host of others. Nausea, your stomach roiling with the assault, every part of your body rebelling, trying to push back against the inexorable force that has taken over all of you. Popping painkillers like they were lifesavers made the nausea worse. I tried to eat so my stomach would have a cushion against the harshness of the pills, but the noise of the pain got in the way of hunger.
I was too tired to eat, though, so it didn’t matter much. Because the flare brought with it a bone crushing fatigue. Every day, I woke up exhausted, and when heading for my mandatory rest period (a.k.a. nap), I’d tumble into a deep sleep seemingly within seconds of lying down. But the exhaustion persisted. Which, I guess, I was no wonder given that my body felt as if it was encased in lead, every movement more laborious.
And then there’s the fear. The fear that this means the meds, which were working just the week before, have now stopped. That this is just the start of something worse. That the flare will continue, become active RA raging through my life, swallowing everything in its path. That it will eat my ability to work, be there for my family, take my sense of humor, my laughter, my equanimity.
Medical folks call this catastrophizing, an irrational thought that something is much worse than it actually is. I believe this labelling of our fear is minimizing something very real. Is it catastrophizing if you’ve been there before and more than once, if you’ve had a flare that kept going? If you have been in that exact situation before and lost months, if not years, of your life? Is it irrational if your crooked joints bear the marks of what happened before. I think not.
I tried to fight the fear, told myself to have faith in the meds and my body’s ability to bounce back. I ignored the constant low murmur of what if, what if, what if, what if, buried it in some grocery shopping, a good movie, a good book. I don’t remember much of the movie or the book, because my brain was busy elsewhere, but it was a distraction for a while.
I tried to be good to myself, in between the painkillers, ice packs, and heating pads. Tried to give myself the space to rest, to heal. Tried to lower expectations, to walk away from tasks that needed doing. To beat back the guilt that told me I was failing by giving myself the space to rest and to heal.
I am better now, but not quite yet out the other side of the flare. I can still feel it pulling at me, its toothy mouth snapping at my heels, trying to get purchase. I run, dance, limp just out of its reach, each day a seesaw between gaining and losing ground. Every day, I get a little further ahead, sometimes a step, sometimes an infinitesimal measure away from the teeth. And every day, I gain a little more faith that the catastrophe has been averted.