Things I No Longer Do With AxSpa
It has been almost two years since my axial spondyloarthritis diagnosis and this year has brought about many new and scary treatments. But, I can finally say I am happy with where I’m at with my disease. It’s been almost 6 months since I’ve been pulled into the depths of a major flare, and as I have been sitting with that this week, I noticed that there are a few activities that I have stopped doing to avoid flares and keep myself functioning. Some activities are situation-depending and of course, some are things I personally avoid because they help me!
Martini, no thanks!
I've always struggled with the side effects of alcohol to begin with so I was used to not drinking, but I would always agree to a glass of wine at girl's night or a family gathering just because I thought once and a while wouldn’t hurt. But it always increased my pain, made me feel awful, and every joint swollen the following day, even after half a glass of wine. So I quit! And in doing so, I’ve been able to avoid a few occasions where I otherwise would have suffered!
I’m sure my fellow Canadian AxSpa warriors will understand how hard it is to say no to this activity. Tobogganing truly is one of the best parts about winter growing up as a kid (and an adult) in Canada. As a parent now myself, this is something that I’m sure will fill many of our long winter days not too far away, but I will be sitting as an onlooker from the sides. After I was given my diagnosis and treatments I understood what was severe pain from inflammation, and not just regular back pain. I made the connection that tobogganing (and biking!) would create pain instantly and it sometimes put me into a few days of flaring. It’s sad to miss out, but my hips and spine are thanking me!
Thank you, next!
The last thing I’ve stopped doing with my AxSpa diagnosis is letting others make me feel like my condition isn’t that bad. I think as humans we can find having empathy for others really hard when we don’t have that lived experience. In my experience, this has lead to a lot of people downplaying what I go through. I've also begun to intentionally not sugar coat my bad days, and live authentically so that others can just see what the truth of my AxSpa diagnosis is!
What are some changes that you have made because of AxSpa?
Can you tell when a flare is coming?