Lesley Elliot, 46, lives on the Isle of Arran with her son Finlay 17. She explains what living with axial SpA (AS) is like in a rural community and the impact of NASS support during the COVID-19 pandemic.
“I first started getting symptoms of AS in my twenties, but my pain and stiffness were always attributed to scoliosis (a sideways curvature of the spine), a condition which I’ve had since birth. It wasn’t until I was in my forties, that I was referred to a rheumatologist who confirmed AS. I’m told this delay to diagnosis is common, and that on average it takes 8.5 years to diagnose AS.
Luckily, because of my diagnosis, we were able to spot Finlay’s symptoms when they started last year and he is was able to access treatment straight away. Living with AS in a rural community is quite isolating. In a population of 4,500, me and Finlay might be the only people with AS on the island!
I manage my pain through regular Pilates classes, and I am lucky to have an excellent instructor here on the Isle of Arran. When I first told her about my diagnosis of AS, she researched the condition to make sure the exercises were right for me. I believe that daily stretches really help relieve my symptoms, but since the start of the COVID-19 pandemic, all classes have stopped.
The wonderful thing about online classes is that anyone can connect from anywhere, which is a big plus for me living so remotely.
Initially, I was at a loss. As we both have AS, Finlay and I have to remain cautious and shield where we can. But then I came across a post about NASS online exercise classes on Facebook and decided to sign up. These classes are delivered by the NASS Bristol branch, which is about as far as you can get from the Isle of Arran! But the wonderful thing about online classes is that anyone can connect from anywhere, which is a big plus for me living so remotely.
The physio, Emily, is brilliant. She has so much experience and is so knowledgeable about AS. It’s been a fantastic support and been great to connect with other people. I would never have come across these classes if it wasn’t for lockdown, so in a way, it is a bit of a silver lining, I am so glad I found the group!