Clare’s story

“When I saw the Stretch-tember programme I thought that this would be a great opportunity for me to try a new gentle activity – something that I can add to my AS management tool kit!”

Clare’s axial SpA caused her to struggle to walk, dress, sleep and experience bowel problems, weight loss, extreme fatigue and depression.

But after a long and painful road to diagnosis, she’s taken up gardening, hydrotherapy with NASS Cornwall branch and, most recently, yoga with Yoga for AS during Stretch-tember. She’s even raised £155 to support others with axial SpA!

Here’s her story. 

Like many others, my road to diagnosis was a long and painful one. Although symptoms started in my teens, multiple trips to various health professionals either resulted in being told there was nothing wrong or misdiagnoses. Despite struggling with back pain and sciatica that make it difficult to walk, dress, sleep, bowel problems, weight loss, extreme fatigue and the depression that came with this, I gave up on going to medical professionals as I just could not face being belittled further, and did not believe that I would ever get any help. I tried every alternative medicine and therapy I could, but nothing helped.

One weekend I was out on a walk, and I mentioned to my partner how unusual it was for the time of year for there to be such thick fog. “It’s not foggy” he said. The next day I headed to my opticians who told me that I had conjunctivitis and sent me home with antibiotics. Two weeks later the antibiotics had not had any effect, and my optician said, “oh well, it must be cataracts”. This just did not sit right with me. How could I suddenly have developed cataracts, aged 30? I walked straight to the eye infirmary and insisted on an appointment. It turned out I was having a nasty flare of uveitis, which in turn lead to a referral to rheumatology, and after an x-ray my diagnosis of axial SpA with sacro iliac fusion.

Although the biologics and other medications really help with my pain levels and reducing stiffness, I had to make the difficult decision to give up on my academic career. Although I truly loved my job, and it was my focus in life, I had to do something different as I had no energy left to enjoy life outside of work. I stopped work and became obsessed with gardening – I love it! Being outside does so much for my mental health, has hugely increased my mobility and reduced the headaches I was getting from too much screen time. Aside from tending to my own garden and veg plot, I also volunteer and help run a community garden project, which gives me focus and valuable social time with others in my community.

Last year a new NASS Cornwall opened in my area, so I started doing hydrotherapy on a weekly basis. I was really surprised to discover that despite all the exercise I was getting with gardening, hydrotherapy highlighted areas that really needed work. Over time, this has significantly increased my flexibility, and I have come to realise that different activities benefit me in different ways. I garden most days, but in addition I try to do one other activity in an evening; that includes going for night walks to spot bats (great for cardio), doing physiotherapy (for specific joint issues) or attending hydrotherapy.

When I saw the Stretch-tember programme I thought that this would be a great opportunity for me to try a new gentle activity – something that I can add to my AS management tool kit! And if I can raise funds for NASS at the same time; why not! Although it took me a long time to accept my condition, the wonderful information from NASS has allowed me to accept it and move forward with my life. In fact, I’m such a big NASS fan that I now also volunteer as a committee member for my local branch. Fundraising and volunteering for NASS gives my life extra purpose; it allows me to meet a lot of wonderful people living with axial SpA and to learn from them.

If you can give a small donation to NASS, be safe in the knowledge that it will be well spent. Although NASS is a small self-funding charity, it amazes me just how much work they do, and how supportive they are of the local branches. If you fancy trying Stretch-tember yourself, I recommend giving it a go. I have found the pre-recorded sessions really helpful, as it allows me to fit yoga into my day at a time that suits me, and I can choose the level of difficultly and length of activity depending on how I feel. Remember, Stretch-tember is free to do – so nothing to lose!

NASS Cornwall are hosting their first health and well-being workshop in October 2024 – “an opportunity for you to learn more about managing your condition and get to know others in your axial SpA community”, so visit the NASS Cornwall page to find out more and book your place if you are in the area.

Sign up for Stretch-tember 2024 today!