Low Battery Mode: Dealing with AS Fatigue
Tonight while Keegan and I were eating dinner, we chatted about his recent AS flare-up. It's been a tough one as he's been stressed out, the weather is changing rapidly, and he took his Humira last week. This trifecta of triggers caused him to go into a mini flare-up. He told me today that even though he was feeling better, he was operating on "low battery mode."
What is low battery mode?
To catch anyone up who may not have a smartphone, low battery mode is when a smartphone gets low enough to where it conserves energy for only basic functions. The phone manages its battery usage to prevent it from dying. This is similar to what Keegan does. When he's in the midst of days where he's in low battery mode, it's all about conserving energy for only the basics. I asked him to describe it more. He said it's a similar feeling to after going through an intense workout and your body and mind give out. You know sleep isn't going to help the fatigue you're feeling all over. It's just a "get through it" kind of symptom. It takes time and rest.
This can be trying as a stay-at-home dad for Keegan. Today he told me that he was able to conserve energy a few ways. First, when playing with our 1-year-old daughter, he lays on the floor with her to rest as much as possible. Sometimes I come home to a mountain of pillows in our living room and I know Keegan has needed a little extra rest that day. He sometimes orders lunch for him and Kaya or put on a little Sesame Street just to give himself a break throughout the day.
Finding energy in a busy day
During Kaya's afternoon nap, Keegan cleans the house or finishes other tasks he needs to get done. But these low battery days mean the nap is rest time for Keegan, too. The biggest piece is to give himself adequate rest periods throughout the day. That helps him deal with the fatigue the most. It's important not to push himself to the limit, but go through periods of activity then rest almost like high-intensity intervals while working out. Some days he has an extra cup of coffee in the afternoon, but he can't rely on caffeine to give him a productive energy boost. Sometimes the extra cup will cause more problems than solve them.
Moving a little bit helps
Keegan also noted that keeping up with some level of physical activity is key to getting energy boosts throughout the day. This morning he completed a gentle 20-minute yoga routine. Some days he'll walk around the block with Kaya for half an hour. This doesn't mean going to the gym and getting a ton of cardio in. Rather, it's about finding a light or moderate amount of movement that can help him feel a little more energetic. It's often tough to get off the couch in these moments, but he always feels like it's worth it.
A little extra comfort
I often remind myself what Keegan is going through during these days to provide him extra time for comfort and rest. When his inflammation increases, his body is using its energy to counteract it. That's so much that he's having to manage mentally and physically. It's critical to have these gentle go-tos for low battery days. What are some of yours that help you get through the day?
Do you use the word disability to describe your AS?