You're going along, completing your mundane daily tasks and trying to make time for what makes you happy in life, when out of nowhere, a flare happens. When you have a chronic illness you know the routine all too well. Just when you think you've got a hold on your constant feelings of pain and exhaustion, your somewhat manageable condition becomes totally unmanageable and sends you spiraling into a dark abyss your not sure you'll be able to come out of.
That's where I was at the end of February. Stuck in quite possibly the worst flare of my life, wishing to shrivel up like a slug touched by salt, never to move again. A combination of physical conditions that took place during a family winter weekend getaway rendered me incapacitated before I could unpack my duffle bag when I arrived home.
After 2 days I was at the hospital getting some heavy duty meds that only dulled the pain enough so I could limp from the bed to the couch and back again. Once I was finally able to travel to the city a week later, my rheumatologist told me that the hospital blood work found my inflammation levels to be 17 times what they usually are, and he was horrified they did nothing more to help me beside mask my pain with pills, and question where my pain was. "Everywhere" I would reply. "Really? Everywhere? But... what bothers you the most?" they'd respond.
As much as I could go on and on about the inability of hospitals to deal with chronic pain patients, I'd rather talk about the very personal experience we endure during our worst days — our flare days.
Over the years I've come to realize a timeline to the emotions that comes with the flare.
- "It's just a bad day, I'll feel better tomorrow"
- "Oh no. This can't be a flare. Can it?"
- "OH GOD EVERYTHING HURTS. MAKE IT GO AWAY."
- "Meds... I need meds... why is nobody helping me? IT HURTS SO MUCH"
- "This is my life now isn't it? This is just how it's going to be"
- "I'm worthless, all I can do is lay here. I'll never be productive again"
- "LOOK AT ME I'M WALKING LIKE A REAL GIRL. LOOK!"
- "I'm going to suffer for the rest of my life. It's inevitable"
- ~emotional breakdown~
- "Hey! No, I'm doing much better now... I'm just happy to be out of the house!"
- Ugh. I wonder when it's going to happen again...
A flare this bad can change your outlook on life. In the midst of it you feel so stuck and unequipped to handle the pain that mentally follows such a difficult physical experience. You feel like a victim again, instead of a champion of pain. Because when you we're in between this flare and your last your forgot how bad it could be, and you forgot that you forgot.
I'd love to be able to better prepare for a flare during my healthier times, and to do so without dwelling on the inevitability of worse pain. I'm not quite sure yet how to do this. Eat healthy? Exercise regularly? Meditate? Sure, all good things — all things we need to be doing more of and promise ourselves we will, right after finishing some mac & cheese in front of the TV.
Luckily, I came out of my flare and felt almost back to normal by my 28th birthday on March 9th. I felt strong enough to spend a night out with friends, which was just what I needed after weeks in bed. A few weeks later I was even healthy enough to adventure to Cuba with one of my closest friends and career partner. But I still feel the effects of that flare today, it's been over a month and I'm still not right, I have a stiffer neck, more swollen legs and get tired easily, but what's even worse that those lingering effects is the depression and anxiety that's left over.
I feel like every flare takes a little piece of hopefulness from me, reminds me that I am not a warrior, I am a person. And as fast as I can climb back up and push on, I can be knocked down and reminded that I am and always will be someone who's sick.