Day in the Life: Flare Day
I’m going to walk you through what my day looks like when I’m flaring. As a note, I do have other conditions that affect my health, but I will mainly be focusing on flare days when my axial spondyloarthritis is the predominant issue I’m having.
Starting the day
When I’m in a bad flare, waking up is possibly the hardest part of my day. This past year has been difficult for some many reasons, but having my husband home mostly full time has been a huge blessing, so when I flare I usually will take the time I need to wake up. This was incredibly difficult to do at first as a mom of toddlers and the mom guilt was so heavy at first, but as time has progressed I’ve accepted this is what I need when I flare!
I will generally take a hot bath/shower first thing in the morning to help loosen up. I found for me this is the most comfortable way to loosen up, and I will incorporate some gentle stretching in the shower or bath. I then make sure to have my coffee and take my meds. If this is a day where my husband was working I would set up a simple craft for my children to do. I've mentioned this before but these small preset activities help save my energy and usually help the morning go more smoothly.
Taking care of the kids
On days where my mobility is limited, I make sure to express to my children what’s going on with my body. They are usually understanding and will walk instead of asking to be picked up. During these days we lay low, I don’t worry about how much TV is watched and give myself a break
The evening hours are often really hard. Dinner will usually be leftovers or take out. More times than not I will switch off with my husband when he gets home from work, and take an hour to rest on my heating pad. The evening is usually when I feel the most disconnected from my family and that can make coping with the pain hard. I will use a mix of heating pads, hot showers (again), and cannabis to get myself ready for bed. Getting to sleep can feel impossible. I've learned to just lean in and do what I can do.
It’s a journey
Flare days, simply put, are awful. But as time has passed I’ve learned what helps, what doesn’t and how to love my body regardless. It’s not easy and I’m sure I have so much to learn, but these are the small ways I've managed to find some comfort during flare days!
Does reading AxSpA patient stories help you in your journey?