Juggling AS, Pain, Fatigue, and a Family in a Pandemic

I've written about my family on the site before, but that was pre-pandemic and pre-second child. My husband, Keegan, managed his pain much differently in the "before times" when it was easier to swap caregiving for him and my first child, Kaya. Today, it looks much different. With a 2-year-old and a 3-month-old, the task of managing pain and fatigue nearly seems impossible.

First, pain management comes down to clear expectations and communication

Each morning between 7:30-8 pm we have a standing meeting on the calendar, "Stand Up". (For those who use Agile methods at work, yes, it's just like that.) The premise is that Keegan lets me know how he's feeling in the morning. How much pain does he have? What kind of barriers does he have for the day? What do we have on our agenda? Then we discuss how we'd like to squeeze in time for his pain management. Sometimes this doesn't happen until the end of the day. Sometimes it means he doesn't get a shower that day.

Google Calendar is our savior here. We put pain management and self-care on there because it keeps us going. Sometimes it doesn't feel like it's enough for either of us, but honoring that time is crucial to survival. It also means Keegan accepting he'll be in a flare-up the rest of the pandemic. That's a tough pill to swallow. So, we take each day at a time and hope that what we do is enough for the day.

What does pain management look like, though?

It's an amalgam of medications and a lot of stress-reducing techniques. I mean, a lot. Having 2 kids under 3 is already stressful enough, let alone having AS and a pandemic. His go-tos include:

• Bi-weekly Humira injection
• Twice daily Aleve
• Medical marijuana as needed via vaping
• Laying down under a heated blanket
• Putting on Salonpas patches
• Hot baths with Epsom salt
• Reducing processed foods and added sugars

The tough thing about AS pain for Keegan is that pain comes from different places, and it's hard to track down. Pain from a flare-up usually means he needs more rest, and to become mindful of his limitations. Pain from the weather he can work through. It means it's a bit more "mind over body," which given this year's insane amount of snow can be difficult. No matter where it's coming from, taking care of his pain is like dealing with a colicky baby. Rather than worrying about why the baby is crying (or why the pain is there), focus on soothing. Soothing the pain, and stress that comes with pain helps Keegan more. If he worries too much about why he's in pain, his mind spirals and the stress often makes the pain worse.

And what about fatigue?

Keegan hates the fatigue with AS. He always says pain is better than fatigue. There's not much he can do with the fatigue other than rest and sometimes drink coffee, but that sometimes makes him too jittery. Fatigue is also something that can change in a moment. There are mornings where he seems completely fine and then in the afternoon, he's down for the count. The only way we manage fatigue these days is for Keegan to tell me when he needs rest. And often, that doesn't mean sleeping. He struggles to nap with fatigue and pain. Instead, he finds playing video games more helpful. It gets his mind engaged without stress or physical exertion.

It's also about acknowledging our guilt, and openly discussing it

If you had met me and Keegan in college, you'd see we're both highly motivated people. Being slowed down, especially in a pandemic, is tough. We have goals and hopes and dreams that we can't focus on right now. It comes with a lot of guilt. I can't focus on my career as I'd like. Keegan can't focus on parenting in the ways he'd like. (Wouldn't it be lovely to go to a museum? To an indoor play space? To interact with other kids?) So we talk a lot about our guilt. Airing it out helps us let go of it, or at least, acknowledge it's there.

I'm curious how others out there with families are handing everything right now. We'd love to hear any tips and tricks!