“I think that the most important thing is to get out of the house (or bed!) no matter how sore my back is and get moving.”
Penelope was swimming 16 hours every week when she started feeling in pain. Her rheumatologist put it down to the amount of swimming she was doing, but she knew there was more to it. Thankfully, she was diagnosed with axial SpA by a different rheumatologist 3 years ago. Now, with the help of her rheumatologist, biologics, daily stretching and swimming, she is almost pain free. This August, Penelope is taking on the Thames Half Marathon (5km) to raise money for NASS and awareness of axial SpA.
Here’s her story.
I have always enjoyed exercising. I swam extensively in a competitive club throughout my GCSEs and A levels. At one point, I was swimming about 16 hours a week! This helped to manage my axial SpA, which was still undiagnosed at the time.
I struggled during the transition from school to university to keep my body moving. I found the jump to university hard due to the huge workload at Oxford and I found it difficult to juggle both swimming and my degree. Sometimes, I would decide not to go swimming because I felt like it would make my pain worse or that I would be very slow compared to the other swimmers.
“I hadn’t been able to swim for a while, yet the pain and stiffness continually increased.”
My father has axial SpA, so as my pain increased, I was referred to a rheumatologist and had an MRI scan. I was told that the pain was not linked to axial SpA and that the amount of swimming I was doing was causing the pain. This didn’t make any sense; we were in the midst of lockdown, and I hadn’t been able to swim for a while, yet the pain and stiffness continually increased.
Under a different rheumatologist I was diagnosed with axial SpA in 2021. I am hugely lucky that my parents knew so much about axial SpA and found a different rheumatologist to get me a much quicker diagnosis than it normally takes.
“A huge milestone was when I went to my friend’s 21st birthday party and I lasted the whole night!!”
The support of my brilliant rheumatologist and his team, biologics, daily stretching and swimming have improved my quality of life dramatically. I am almost completely pain free and I can do much more in my day-to-day life than I could in my first two years of university. A huge milestone was when I went to my friend’s 21st birthday party and I lasted the whole night! I still find standing and walking for long period of times difficult but luckily, I have my bike to get to wherever I need to go. I still go through the odd ‘flare’, but they are now much more manageable. Now, if I am invited out by friends, I happily accept because I know I can manage my condition and have a fun time.
“I enjoyed the less pressured environment and the fact that I could just float if I didn’t feel like swimming!”
I have now found a happy balance of going to the gym and doing yoga when I don’t feel up to swimming or when there isn’t enough time to get to the pool. I have learnt that exercise is highly beneficial, even if in the moment it is painful. I think that the most important thing is to get out of the house (or bed!) no matter how sore my back is and get moving.
I discovered open water swimming during the summer of my first year of university and I enjoyed the less pressured environment and the fact that I could just float if I didn’t feel like swimming! Since then, I have swum religiously throughout the summer terms. I even tried to swim through the winter last year but was stopped due to flooding and poor water quality. Last year I competed in my first open water event; a 2km swim at Henley in the open water varsity against Cambridge. I really enjoyed it, although I remember taking my first stroke and thinking “my body feels a bit too stiff for this”.
I have decided to challenge myself to swim the Thames Half Marathon (5km) this August and raise money for NASS and to raise awareness about axial spondyloarthritis. I have enjoyed the training so far and I’m looking forward to the sun coming out so that my open water swims are a bit warmer!
Good luck Penelope! Thank you for choosing to support NASS. Every penny you raise helps provide information and support to people with axial SpA with the help of NASS.
Inspired by Penelope’s story?
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