So, a little about me and why I'm raising funds for NASS. Sorry it's a bit long, but I think it's important to understand why I'm passionate about raising funds for NASS.
I started having hip and back pain when I was about 8 years old. Repeated trips to the GP always ended with the doctor assuring my Mum that I just had 'growing pains'. I was a very sporty person and as I got older, realised that when I was moving, the pain was far less, but when I stopped I would rapidly stiffen up and the pain would increase again. Every few weeks, the pain would really kick off, then slowly settle and during these times, I just kept moving and exercising as it distracted me from the pain. More trips to the GP always ended with the same message - being told I was too young to have joint problems. As I got older, a busy family life and work took over and although I still played sport occasionally but mostly I walked and worked in the garden to stay active - staying active really helped to manage the continual pain.
I still visited the doctor occasionally when things got really bad - tests for osteoarthritis and rheumatoid arthritis always came back negative. My back was never x-rayed except once when I was 14 (there was nothing to see of course). My hip was x-rayed in my mid-twenties when I'd had difficulty putting weight through it for over a year - again, nothing to see. On several occasions it was suggested that the pain was psychological and it was recommended that I see a psychiatrist. That's when I really started to lose faith in the medical profession! I knew the pain was very real but couldn't understand why various tests never showed anything. By my late thirties, it seemed like every few days, the pain would be in a different place and I really did begin to wonder if the ever-present low back pain and fatigue and frequent pain in my ribs, chest, shoulders, hips, knees, hands and feet were real. It makes you feel so bad being in that situation when you start to question yourself and there doesn't seem to be any hope of finding answers. The only good things were that exercise still helped to ease the pain, and I had a wonderful supportive family around me. Night times were my enemy and decent sleep became a thing of the past as it was frequently interrupted by the need to walk around to ease off the pain and stiffness.
Going through some paperwork after my beloved Dad died, I found a Coal Board medical report about his back (carried out after one of the many times he was badly injured as a coal miner). The report said that he had some fused vertebrae and said that 'Ankylosing Spondylitis' was the cause of his back pain. It had never been mentioned, so I looked it up. Oh my goodness - it was like I was reading about myself!!! Feeling hopeful, I took this information to my GP. He was terribly nice about it and even said he'd run a particular blood test but the chances were I didn't have it because it was so rare and pretty much unheard of altogether in women. The blood test came back positive and finally, aged 42, I was referred to a rheumatologist. More tests and finally I was told that I had 'mild Ankylosing Spondylitis'. The relief of finally knowing what all the pain was about was massive! Fortunately for me, it seems I'd been doing the right thing all my life by staying active. I was told about the local NASS group and joined within a week of diagnosis and have been going ever since, now being Chair of the Woking and Weybridge group.
Shockingly, even though AS is more common than MS (and everyone's heard of MS but few have still heard of AS), the average time from onset of symptoms to diagnosis still takes seven to ten years. Years of not knowing what the pain is and why you have it. NASS not only support all of us with AS, but actively educate and raise awareness in the medical profession about the disease in the hope of reducing diagnosis times. If I can help to save a single person from having to go through an experience like mine by raising funds and awareness, I'd be over the moon. That's why I'm walking for NASS.
Fourteen years on from diagnosis, I still walk a lot, I still stay very active and I still don't sleep much. Unfortunately for me, my body won't tolerate any anti-inflammatories, so pain relief and exercise get me through, although I'm hoping to try a new treatment soon :) I've had a lot of surgeries (all bar four between 2002 and 2013) - eighteen orthopaedic ops on knees, shoulders, elbows, spine and neck either because of injury or because I have hypermobility syndrome which has also caused problems of its own. So getting this body through those 50km will never be easy, but it will get done! Thank you for reading my story and I hope that you will be able to sponsor me, no matter how little - every single penny really does count and will help NASS to be able to help more people.
Kathy Miller - https://www.justgiving.com/Kathy-Miller1/