“I was 20 and during my first pregnancy (which seems to have been a trigger factor for me) when I was diagnosed with rheumatoid arthritis, lupus and all different things. It wasn’t until I moved to Norfolk 15 years later that I had the blood test that revealed it was actually ankylosing spondylitis!
“I was told at my initial arthritis diagnosis that I would be in a wheelchair by the time I was 30.
“I thought ‘I’ll show you’, and trained to become an aerobics and step aerobics instructor which I successfully taught for about 10 years. Although I was taking anti inflammatories, pain killers and medication for the “arthritis” at the time, it was the exercise that was keeping me well and mobile.
“I am almost obsessed by exercising and keeping moving. It’s a difficult thing to juggle as I have recently been diagnosed with secondary fibromyalgia. I keep moving and exercising every day for the AS, but I’m constantly tired and feel like I want to rest for the fibromyalgia.
“I wanted to fund raise for NASS as everyone knows about fibromyalgia but if I ever do mention the AS no one seems to know about it. Until recently hardly any of my Zumba friends knew I had the condition, but after a recent flare up I had to tell them. They were all surprised and supportive but also very ignorant of the condition. It was then I decided to fundraise to also raise awareness.
“It was good to meet someone else with the condition at the fundraising event as she seemed to be cheered up by how long I’ve had the condition and how well I look and seem, so I was happy to encourage her.
“It’s nice to know NASS is there to help and support us, and to be sure that if I needed to, I could ring the helpline for advice and support.
“My particular way of dealing and coping with the condition is to take the medication, keep moving and pretend I haven’t got it! But who knows, in the future I may well be ringing and it’s nice to know NASS is there if needed.
“My AS does affect my day to day life as I get out of bed like a 90 year old and have to do a lot of exercises to get out of bed and get moving to start the day. But once I’m up – Hello world! And then I’m off! Sometimes I know I’ve overdone it and I have to give in and have a rest day, but luckily they are few and far between. The condition is annoying and sometimes debilitating, but something I’m determined won’t stop me doing the things I want to do!”
NASS would like to say a special thank you to Lizzy Cane and her Zumba ladies for hosting a fantastic clothes sale and craft fair to support our services. The event really got people talking and was a great success in raising awareness of axial SpA (AS). Lizzy and her Zumba ladies raised an impressive £301 and we are really grateful for everyone’s contributions.
Find out more about fundraising for NASS.