Sarah's story
“I know and understand how valuable movement is, so I am stretching with NASS for Stretch-tember.”
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It’s been 10 years since I first started having symptoms of Axial Spondyloarthritis (axial spA). In my early 20s, I often suffered from sharp, shooting pains, and muscle spasms in my lower back, even having to roll myself out of bed onto the floor to get up in the morning. I battled to get clarity on my symptoms for the next 7 years until I was finally diagnosed – first with a Spondyloarthropathy in December 2018, and then with confirmed axial SpA in August 2022. Over that time, I’ve lived with daily pain in my sacroiliac joints (both of which now have bony growths), my spine, knees, feet, hands, chest (costochondritis), and elbows, as well as debilitating fatigue.
To date, I’ve managed my symptoms through medication, making time for additional rest when I am struggling with fatigue, using plug in heat pads, taping painful joints with physio tape, using a massage gun and hot epsom salt baths. I’ve even changed my career path to better manage my axial SpA – I am now self-employed and work from home so that I can put my health first. But one thing that I noticed particularly helped my pain and stiffness (even before getting my diagnosis) was movement.
I used to be a regular gym goer, did long hikes, and loved to take dance classes. But over the last four years as I’ve come to terms with my diagnosis and my disease has progressed, I have been unable to do the high impact or high energy activities that I used to enjoy. I flare much more easily than before and have been worried about exercising in case it causes even more pain and fatigue. Even if I go out into a local town to meander for a couple of hours, I often find myself having to take a nap to recover when I get home. That started to change when we adopted a dog in October 2021. He has been an incredible source of joy for me, but he also gets me up and moving every morning – even if it’s just a gentle walk around the block. It’s been the only thing I felt that I could manage without causing a flare up. Or so I thought…
During Stretch-tember last year, I saw that NASS were running a live Yoga for AS taster on their Facebook group. I decided to give this live session a go and I absolutely loved it! This wasn’t traditional yoga that I’d tried before, where I’d struggled with fast pace or difficult poses. It was gentle and allowed me to move/stretch my joints without fear of hurting myself. After the taster, I decided to join Yoga for AS and started attending their live classes. It has made a huge difference to me in the way I manage my axial SpA.
The most important part for me is that both Geoff and Jamie have axial SpA themselves, so they are able to understand what it’s like for you AND modify the poses so that they’re safe for people with axial SpA. I feel confident that even if I go to class and do 10% of my normal level, it’s not going to make my axial SpA worse. Since my diagnosis, I have struggled with knowing what I should/shouldn’t do when it comes to exercise and not having any instructor guidance (most of them haven’t even heard of axial SpA). It’s also been really beneficial to my mental health as I am spending time with others who have axial SpA – everyone is so supportive of each other; it really helps you to feel less alone.
Both NASS and Yoga for AS has been an essential part of learning to live with axial SpA, I know I wouldn’t have the knowledge I have now without either organisation providing support. I am incredibly grateful for NASS showcasing various types of movement, and I don’t know if I would have found Yoga for AS without them.
“I know and understand how valuable movement is, so I am stretching with NASS for Stretch-tember.”
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Read Simon's story“I have decided to take part in Walk Your AS Off to raise awareness but also to make sure I’m active every day and walking more.”
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