My name is Gilly, I am 36 years old, and a wife and mother to four lovely, lively children. I was diagnosed with Ankylosing Spondylitis four and a half years ago, just after my third son’s first birthday. I can trace back the symptoms of AS to my early teens. Sitting in my rheumatologist’s office on that very first appointment, my history of the intense debilitating pain that came and went suddenly, all finally made sense to me. My story has similarities to so many of you on here, but I feel lucky as I have never felt that I have been unsupported, or not believed. Part of the long delay in my diagnosis was because I had sort alternative help through osteopathy, yoga, Pilates, the Alexander technique and exercise to try and improve my bad back… I rarely saw a doctor or mentioned back pain to them. Intuitively I have always known that moving was good for me, despite the pain. I feel that my life prior to diagnosis has helped me ward off the dreaded spinal fusion. Having children young meant I gave up smoking and I learned to cook healthily. Mainly because I wanted to be a good mum, but both those things I have found out later, are extremely beneficial in dealing with AS. Also having babies to chase after and children to walk to school has meant I was forced to stay active, despite bouts of crippling pain.
I live in the UK and have had wonderful support from my local NASS group and our dedicated team of physiotherapists. I am prescribed a slow release NSAID which helps me sleep more comfortably at night, and allows me to feel less stiffness and pain in the mornings. Swimming, hydrotherapy, walking and daily yoga practice are all a very important part of my life now, in my battle to stay well.
I mostly feel ‘normal’ at the moment, but as soon as I get complacent or over do things my AS will come and bite me on the bum! Managing my energy levels is a constant and frustrating challenge. I am lucky to have an amazing husband who takes great care of me when I’m ill, and with his help and support I will continue fighting to stand tall and choose joy.
Thank you Cookie for your love and dedication in creating this amazing project, I am very proud to be a tiny part of it.
Love and peace to you, and all that read this.