Jonathan Moore “Ginge”
My name is Jonathan Moore, most of my friends and people who know me call me ‘Ginge’.
I’m a 39 year old Yorkshireman (Born and bred in Leeds), currently attempting to take over the South (now living on London). I work in the film industry as a prosthetic make-up artist which is the only job I’ve ever wanted. It’s brilliant, but the long hours (20 hour shoot days sometimes) don’t help with the fatigue that AS brings with it.
I have lived with Ankylosing Spondylitis (or as my girlfriend calls it, Spongebob Squarepants – easier to remember!) since I was a teenager, although it took until I was in my 30’s for my problems to be given a name. That turned out to be a blessing and nightmare. I had tried for years to find out what was the cause of the swelling, pain, stiffness etc. and had so many blood tests I felt like a pin cushion! I was told that I had a bad back (classic!), growing pains (another beauty) and reactive arthritis. I learnt to live with it and had to get up an hour before I needed to, to be able to get my joints moving enough so that I could walk to school. Sometimes I had to walk with a stick, which was the focus of lots of ridicule by other students. So much so that I refused to take it and struggled with stairs and frequently had to miss physical education.
I had to fight with my GP’s to get referred to specialists as they didn’t think it was anything serious. After finally getting my way, I went to see my first specialist and went home feeling deflated. He was very evasive with answers and wouldn’t tell me what he thought it was, only that it was arthritis and there wasn’t anything really to do except painkillers and anti-inflammatories. I wasn’t going to accept that and found another specialist in Oxford who was very well respected in the medical world. I told my specialist that I wanted to be referred as he wasn’t helping me at all. He was a little taken aback, but agreed and my first appointment with my new specialist saw me having an MRI and other tests. The results came back that I had the HLA-B27 genetic marker and AS. I felt relief and fear at the thought of what that might mean. The phrase ‘A little knowledge is a dangerous thing’ certainly applied here as I went home and googled ‘Ankylosing Spondylitis’ and cried. A lot. I didn’t want to become ‘one of those people’ on the sites that I was looking at and hit an all time low. Stress of course didn’t help and I was terrified about what was going to happen to me.
It took a long time to come to my senses and I looked again at the websites but read thoroughly and carefully until I had a good knowledge of my condition. I started exercising and took up yoga and noticed a massive improvement in my flexibility and also my mood.
I am lucky in that I have a milder form of AS and so far I haven’t had to give anything up because of it. I have flare ups of course and if I push myself I can find myself struggling to get out of bed or do anything for days. It’s a constant juggling and figuring out how much you can do day to day.
My family are very supportive (with AS and everything I do, so I am very fortunate) and my girlfriend too is great looking after me. I do think though, that people will never know how it feels and I’m sure some people still look at me as having back ache!
All in all, I’m a very lucky man. Although AS is a part of me, I kind of embrace it now. It is part of what made me who I am today.
Thanks for taking the time to read this.
We’re all in this together and knowing that I’m not alone helps me keep fighting.