Getting Through a Long-Term Flare-Up
It's the fall of 2020 and this year challenged our family in ways we never could have anticipated. Keegan, who has AS, and I were used to his occasional bad flare-ups. But this year has been a doozy. COVID-19, getting pregnant again, raising a toddler, buying a house, and moving. It's a lot for us. And it's a lot for Keegan's AS. The other day when talking to Keegan, I realized he's been coping with a flare-up for months now. Given he's still in the midst of the flare-up, I wanted to take the time to interview him about what it's like and how he copes.
When does a flare-up become a long-term flare-up for you?
Keegan: I'd say where I never can fully recover from a flare-up and it carries over into a flare-up. Then I have stacked symptoms that I can't get away from. I have to have a lot of rest. That's the most accurate way to describe it, it's a symptom of one flare-up that goes into another flare-up.
Is each flare-up unique?
K: Yeah, every flare-up is different for me because I have so many symptoms. Right now, I have an enthesitis flare. It's the symptom that's causing me the most trouble, and right now it's the thing that keeps me up at night. It's horrible in my back where the connective tissue is touching my rib cage.
How do you emotionally cope with long-term flare-ups?
I had to psych myself up in the mirror the other night. I remind myself that I've been through worse before my diagnosis and treatment and hip replacements. It's a lot of reminding myself that I can do it because I have before. I also have to reaffirm things about my own personal happiness--I deserve rest, being taken care of, I'm attractive even though I'm going through a flare-up. I have to keep up with all those positive things to make sure I keep my stress low and avoid depression.
Having my hobbies is important too. Hobbies that help me keep my mind off of the pain is really good during a long flare-up. I can get a mental break from my physical pain. I don't have to. pay attention to it for an hour or two. Right now, I draw or play video games. But when my back hurts a lot, I usually play video games because it allows for more comfortable seating.
How do you know when you're coming out of a flare-up?
I usually can tell from having my energy level start to return to normal. The fatigue is a bigger mark of my flare-up compared to other symptoms. I might have a lot of joint pain just ni one day from the weather, which is like a mini flare because at the end of the day it's gone. But where I usually have lasting fatigue, it's from all the symptoms I deal with from a flare. I'm pretty good about getting enough sleep. When fatigue is an issue, it's usually because I can't recover from days of symptoms just from sleep. It's not enough to fully restock my spoons.
What helps you physically get through a long-term flare-up?
A physical break in the day is a big deal. I need to recharge to get through the rest of the day. Teaming up [with you] on big chores. If we went shopping together, it's easier than going shopping by myself with Kaya (our daughter). Not traveling long distances is good. Just trying to get back into a routine that my body is used to having [is important].
What advice would you have for someone else going through a long flare?
It's my AS advocate tag, "Hang in there. You got this." You have all the tools necessary and it's going to pass. You can do it.
Do you use the word disability to describe your AS?