Getting Through A Flare-Up During Coronavirus
I saw it in my husband’s eyes the other night. Keegan, who was diagnosed in 2013 with ankylosing spondylitis, confirmed what I suspected. All the stress of our personal lives, spring weather changes, and quarantining caused a flare up. Every day for the last 2 weeks, he’s had constant sharp pains. Last night he told me over dinner, “It’s like I can map my skeleton with pain. Every joint and bone hurts.”
This has been tough
As his caregiver, it’s been one of the toughest, if not the toughest flare up to get through. We live in Philly, away from our families in Ohio and Tennessee, and relied on friends to babysit our year and a half old toddler. As the news came in that we’d have to stay at home and limit our access to people, it became clear that Keegan’s flare-up would be here to stay for a while.
So, like an unwelcome guest, we’ve dealt with the flare up in the best ways we know how. But this flare-up doesn’t seem to want to get better. Keegan calls it a “pain flare-up” as most of his flare-ups bring other symptoms, like brain fog and fatigue. This one is just pain, which naturally brings about problems with sleep and exhaustion.
This stress is global
My therapist the other day noted something that struck me: we’re not just dealing with our own personal stressors anymore. With the coronavirus, we now have local and global stress to deal with. The typical self-care techniques that worked for Keegan to get over his flare-up no longer help him get over the flare-up, they just manage it.
Small things we're doing to get by
We’ve found ways to manage as a family. First, I was lucky to still have my job and take off a week of vacation that I had planned to previously take in April. This, at least, lets me take care of our daughter throughout the day more. Rest, as many know, can be a help and a burden. Keegan’s still looking for that right balance with this flare-up.
Next, we’ve found that giving each person one moment of self-care is critical to keep the flare-up from getting worse. It may not be what remedies the situation, but it at least keeps the stress from getting worse. Keegan and I bought the Nintendo Switch game, “Animal Crossing”, to play with our friends online. We’ve bought Epsom salts with lavender for baths. Keegan always takes breaks during Kaya’s nap and I take over more cooking and cleaning.
Last, we’ve accepted that our plans to reorganize the basement, clean our backyard, clean the car, etc. will just have to wait. As someone incredibly goal-oriented, this is tough. But honestly, just cleaning the kitchen and getting laundry done is a miracle for our family right now. By 6 pm every day, our living room and dining room are completely covered with toys, and that’s fine.
For now, it's just about being good enough
At this point, we’re coping. And we’ve had to accept that as good enough for now. It’s probably a tougher pill for me to swallow, as being a caregiver I always hope to see Keegan’s flare ups and symptoms get better. It’s always scary to not know how long a flare up will last, how many days off I need to take, or whether Keegan will have excruciating pain at any moment, but we’ve accepted that if we get through each day, then we’re doing exactly what we need to. We’ve kept ourselves comfortable, fed, and as content as we can through these trying times.
What have you all done to help your AS during the COVID-19 outbreak? Has anything helped your stress or keep you active during this time? Keegan and I would love to know!
Do you use the word disability to describe your AS?