My tale of woe began nearly forty years ago when I first started getting excruciating pains in my hips at the age of 24, so bad I was often unable to walk or even get out of a chair. The diagnosis was sciatica and to stop playing football, cricket etc. all the things that I loved doing. This pain and also lower back pain was diagnosed by various doctors as lumbago, sciatica etc and the treatment was to take painkillers. Consultations with orthopaedic surgeons were a waste of time, I was told you will need a new hip in 20 years. (40 years on I still have my own hips)
This went on for the next twenty years as I struggled to carry on at work as a police officer, taking very little time off and somehow managing to keep active but really suffering for most of the time. By this stage I accepted pain as part of my life, I didn’t know what others felt, was this really what life was all about?
In 1992 we were involved in an accident where three cars drove into the back of our car, the resulting pain in my neck was intense and did not go away. Again I struggled on, though thankfully in an office based role at Police Headquarters. In 1995 things got so bad that I was sent to the Police Convalescent Home where a physio started to pull and push on what was now my rigid spine. After a couple of days he stopped and said *You don’t have whiplash your spine is totally rigid you have AS. Much to my dismay it was this stage it was decided that I could no longer safely perform the role of police officer and I was medically discharged from the service.
That is where and when I stated to understand what was happening to my body. An appointment with a rheumatologist confirmed the diagnosis, even without the x-rays he took one look at my posture and confirmed I had AS. Thereafter followed numerous trips to hospital, which continue to this day as the doctors seek ways to help me. I have tried more drugs than I care to remember, goodness knows what harm they have done to my body, in later years the anti TNF drugs have been administered, sadly with no effect on me as the disease has done its worst and the whole of my spine and neck are now locked allowing little or no head or back movement.
Due to the illness I cannot do all the things that fathers and grandfathers do, sport is out of the question, gardening is restricted to 20 minute intervals and I cannot even go safely for walks etc without the love and support of my lovely wife, Sally. Even standing to watch the grandchildren playing football leaves me in agony. My other companion is my trusty walking stick as now my legs, knees and feet are also suffering and greatly restrict what I can do.
On the plus side I have become quite the expert on the disease and I am often called upon by my Rheumatologist to help with post graduate training and GP training so that together we can help publicise the disease and make more doctors aware of AS,in the hope that people do not suffer like me with mis-diagnosis and get the new drugs at an early age so they can keep active and hopefully avoid seizing up like me.
Maidstone Kent England