Celebrating a quiet victory over a physical challenge I used to dread
Recognizing how my ankylosing spondylitis symptoms have improved over time
Craning my head back, I surveyed the wood and metal structure towering over us. “Come on, Mum, let’s climb it together!” my two kids, ages 5 and 7, shrieked in excitement. Tightening the straps of my heavy backpack over my shoulders, I nodded and grinned back at them as we started up the 7-meter-high (about 23 feet) aerial tunnel at the Rio Tinto Naturescape Kings Park in Perth, Australia.
Just a few years ago, about 18 months after my ankylosing spondylitis (AS) diagnosis in 2019, our young family visited the same nature adventure park, but it was a very different experience for me. Because of AS, my spine was still stiff and painful, and I dreaded the idea of crouching down or scrambling awkwardly through an enormous park-sized playground.
The last time I stood in the same spot in front of the Python, which includes ladders, slippery slopes to climb, and mesh tunnels, I was forcing a smile and trying to hide the pain from my children. I looked with silent horror at the mountains of boulders and the twisting walkways built for physically capable people, knowing that my spine and sacroiliac joints would be flaring up for days afterward. I didn’t want my little kids to disappear out of sight, so I forced myself through the sprawling nature park.
Having energetic kids who thrive on physical challenges can be a difficult part of AS that, years ago, I hadn’t even considered. Our family has now moved through the extremely hands-on baby and toddler years, where the kids need constant lifting and carrying, but older children still want their parents to join in the fun. They want us to kick footballs, ride bikes, catch flying frisbees, and jump in waves with them.
I never want to resent doing these activities because of my AS symptoms. I also don’t believe in hiding emotions or feelings, which is why I’m so grateful to have some control over my AS these days.
How far I’ve come
My recent return to the Rio Tinto Naturescape was a real “aha!” moment for me as I realized how much my AS symptoms have improved since my early years with the disease. I shaded my eyes to look up at the structure we were about to climb and didn’t have that former feeling of dread about how my AS would respond. Because my symptoms are currently controlled and I’m almost pain-free, I could be fully present with my children without holding back, and pure happiness washed through my body like a river of sunshine.
Controlling my AS hasn’t been easy; I’ve had to proactively search for solutions and carefully test and record how my symptoms react. Some solutions have a temporary or minor result, like cold packs or nonsteroidal anti-inflammatory drugs. Others take considerable effort but have a huge payoff for me, such as the no-starch diet for ankylosing spondylitis.
I know those of us with AS are all on individual journeys, often with varying symptoms and levels of pain and stiffness. I wanted to share my quiet victory, not as an expectation that anyone can achieve remission or reduce symptoms, but to note that rays of sunshine are still possible, even if you feel in a low, dark place because of AS. I felt depressed and desperate at the time of my diagnosis, but it’s important to never give up on yourself and to keep searching for new strategies to help control the disease.
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