“By the time I was diagnosed with axial SpA, permanent damage to my spine had occurred. I’m now walking to make a difference to others”

NASS Member Dominic Myers is taking on a year-long walking challenge to raise awareness about axial SpA and support NASS’s work to reduce the delay to diagnosis to just one year. This is his story. 

I first experienced symptoms of axial SpA around 1986 when I was just a teenager. When I finally received my diagnosis in 2017, I discovered that my spine had fused. I’ve been told that it looks like a bamboo walking stick now.

Axial SpA is an invisible condition, and it’s not immediately obvious to look at me that I’m in pain or have limited mobility. When I asked for a Blue Badge parking assessment, I got some very quizzical looks!

Keeping active is really important when you have axial SpA.

It sounds counter-intuitive that exercising your aching joints can prevent stiffness later, but it works a treat! Luckily I enjoy walking, and I take my dogs at least twice per day. When I’m walking, I like to listen to audiobooks. I also spend a lot of time keeping an eye on what my dogs are up to – particularly the youngest, who often decides to pick up terrible things to eat on our routes!

I find that if I sit or stay still too long, for example, if I’ve had a long drive, my joints can get very stiff. This stiffness, coupled with tendonitis, means that I walk like I’m about three times older than I am. (OK, that would put me near to 150 years old, but you know what I mean!)

I started walking more during lockdown.

In 2020, my friend and colleague Claire Ashton started a virtual walking challenge to keep people at work moving during lockdown. I signed up and found the experience so positive as it encouraged me to spend a lot more time walking, especially at weekends.

Having a goal in mind helps keep me moving. As a web developer, I also find it really motivating to collect data to chart my progress. This also keeps my mind engaged when I’m not walking.

I enjoyed the challenge so much that when it finished, I was determined to keep going! Claire and I signed up for the Walk 1,000 Miles in 2021 challenge, which happened to coincide with NASS’s Walk with Us, Walk for AS fundraiser.

I started walking in January and hit the 1,000-mile mark by April!

I couldn’t believe that I had managed to walk so far in less than four months, so I signed up for another virtual challenge – the Pacific Crest Trail – which is a further 2485.5 miles!

I’m also very proud that I’ve met my fundraising target of £250. It took so long to get my diagnosis of axial SpA, by which time permanent damage occurred. I’m hoping that the money I have raised will help NASS make a difference to others living with the condition.