Things I No Longer Do With AxSpa

By Jes Hojsan

2 min read

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!

Canadian winters

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?

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Lisa Marie Basile Moderator & Contributor
Love this so much. I am currently navigating the alcohol reality. It really affects me and my AxSpa in a huge way. Sometimes I'll have 1 glass of wine — and BOOM. Flare-up within the hour. It really is that inflammatory (which sucks!). I'm wondering, have you found quitting hard socially? Or, do you ever miss just casually having a cocktail? Also, I know what you mean about activities. Some just have to go. Like trampoline bouncing (it was a fun workout I tried, haha) and hard HIIT for me —I mostly can't do the harder stuff anymore....the spine hates it. Thanks again!
Julie Vallortigara Moderator & Contributor
Hi Jes, Thank you for sharing those precious changes you have made. I do relate to less alcohol intake helps, it seems now I can't handle much anyway. I am not in Canada, but moved last year further north, in Edinburgh, and I did feel the change in terms of the impact of the cold on my condition. Still, I love being here so I will stay 😉 Maybe that's a good preparation before I get to visit Canada, ha ha! I have never been and I would like to go on a trip there. Yes these changes we can make for ourselves, in order to live better with our condition, are key! I find these quite empowering, rather than frustrating, because we see the benefit straight away by having less pain, fatigue, less swollen joints as you say, avoiding triggering a flare. Basically we feel more in control by taking these decisions for our life. Thank you for your article, this is a great reminder for me. This is a journey, a work in progress. I have stopped doing some things, but started doing some other ones, and also revisited old passions of mine. All this with my new self, my new body, and the motivation to find ways to adapt and enjoy those activities. Take care, Julie.
Anna Samson Moderator & Contributor
Hi Jes, Fellow Canadian here! Reading your article was very reassuring. As a young person, it is often difficult to refuse drinks when out with others, but it is important in order to prevent flare-ups. This is something I still find myself struggling with. Canadian winters are also their own challenge with the cold and how it affects pain. Your last point, about not letting others diminish how my AxSpA affects me, really spoke to me. That is also something I still struggle with and you're right, there is no need to sugarcoat how bad AxSpA can be and how it affects my daily life. Wishing you well, Anna