Watching a Loved One Go Through a Flare-Up
Before we knew they were called "flare-ups," I knew my husband, Keegan, was experiencing something like I'd never seen before. Except for maybe seeing a Youtube clip of a woman in childbirth, I never witnessed a person in such severe pain before. I've always focused my attention, articles, and efforts on describing what horrible flare-ups are like from Keegan's perspective. That's the point of caregiving, after all, right? Focus on the person experiencing the disease, not myself.
I couldn't be more wrong
The last 3 weeks brought on one of the worst flare-ups I've ever seen Keegan in. And I've forgotten what it's like to witness my significant other in this state. I forgot how much emotional, mental, and physical labor it takes as a caregiver to go through a flare-up with Keegan. Because that's what it is, a journey for both of us. Even if I don't feel the pain physically, it's absolutely heartbreaking to watch him be in pain, with horrible fatigue and brain fog, without knowing when it'd end.
What got him in such a bad flare-up?
Ironically, we were hoping to give ourselves a break from the stress of the pandemic. My family gets a beach house on a small island in North Carolina. We all quarantined for 2 weeks before, meal prepped, brought groceries, etc. We were prepared for anything, or so I thought. We packed up the car and spent over 10 hours driving down the east coast. And I forgot what 10 hours in a cramped space does to Keegan's body. It completely wrecks it.
My first instinct is to act
But it's not what I or Keegan always need.
I knew something was off within 24 hours. Keegan was already in a low-grade flare and needed some extra help. The ride to the beach pushed him over the edge into a severe flare. He seemed out of it the whole first day and struggled to remember small tasks. While taking care of our daughter, his usual perky self was gone. By the second day at the beach, he looked at me and told me it was bad.
So I went into "fix it" mode. I called his doctor to request muscle relaxers he sometimes finds helpful during a flare-up. I went to the grocery store and bought Epsom salt for baths, more Aleve, and Tylenol. I delegated childcare to my family as much as I could all while taking remote calls at work. I luckily could take a half-day and decided I needed to step into this "go go go" mode. I needed to get rid of Keegan's pain and fatigue.
And I realized maybe it was for my own sake. That is, to protect me from having to see him suffer. One of the toughest parts of being a caregiver for someone with a chronic disease and chronic pain is never knowing if my actions will help his symptoms. Will it be enough? Would he be able to enjoy his vacation today? Tomorrow? At all? Part of making myself busy is to keep myself from feeling the emotional turmoil of it all. It's hard to accept that I can't fix it all.How do I get myself to stop and process? Ask the following questions:Have I taken all the actions I can right now to alleviate Keegan's symptoms?Have I talked to Keegan yet about he's feeling emotionally as well as physically?What would comfort both me and Keegan right now?When was the last time I cried or let myself feel what I need to? Have I journaled or meditated in the last 24 hours?(As my therapist asks me) How can I be gentle to myself right now?Being a caregiver is more than a series of checklists to take care of someone. It's becoming emotionally invested in the person's well-being and helping them cope through the good, the bad, and the ugly. It's recognizing one's own part in the disease management and accepting that each day will be different.How do you manage when a loved one is in a flare-up? Or how do you rely on caregivers when things get tough?
Other than back pain and fatigue, what is the most common symptom that AS patients experience?