A friend of mine asked me to say a few things about my life with Ankylosing Spondylitis (AS), while at a bit of a loss of what to say about it, as it would probably be more apt to say, "Tell me about your life..." as I have lived with AS all my adult life it's been what has shaped me into the man I am.
When I was younger it started when I was having difficulty moving in the morning and had back pain, for no apparent reason, I'd see the doctor but by the time I'd see him I would be starting to feel more mobile and feel a bit silly about bothering them, this carried on for ages, as I would feel better as the day went on, I carried on. I knew something was wrong but the Doctors did not know what was wrong... powerless would be the word for how I felt, perhaps the Doctors felt the same, but for all they could tell I was fit and well, so I guess they didn't give it a second thought.
One of the days I felt absolutely awful so I made an appointment at the Doctors, it's hard to remember how old I was, but I think I was still at school, so was probably 15, the Receptionist told me that I would only be able to see a Locam Dr. so was unsure that they would have a handle on my problems... I am glad to say that I was way off the mark, he listened to what I said, and then I was completely surprised that he had an inkling of what I may be suffering with, when he said Ankylosing Spondylitis, it sounded a funny name so I was a bit confused...
When I was told it was a form of Arthritis I was shocked, but also grateful that I had a name for what I had so could get cured... oh wait, that was the next bombshell... cure, there is no cure, just management, and in those dark times the only form of management was anti inflammatory pills and exercise, ok so I have pushed ahead slightly, the next stage of course was getting properly diagnosed with a blood test and xray.
To be honest I carried on with my life after that plodding along getting through School and Collage, just taking anti-inflammatory pills when things were bad, I didn't bother doing my daily exercises, if I had perhaps I would be better now, but as a young lad I had better things to do, seeing my mates, playing on mega drive, smoking and drinking, getting up to the normal stuff that kids do... for that I do not regret.
As time went on, in the late '90s so I would in my early 20's I was concerned that I was getting worse, well I wouldn't be getting any better would I?? It was suggested that I should have some extensive physio treatment / hydrotherapy that would involve a week in Hospital at Cannock, the course helped me a great deal, at the time I was in a flourishing relationship with a wonderful woman who later on became my Wife.
Unfortunately the exercises that I learnt at Cannock must have fell on deaf ears as I continued to carry on as I was before, I did not see that anything could help, there was no cure, I had the message that they could not do anything to help, so I gave up on trying, and carried on living my life in pain, I didn't go the the doctors, I had a repeat prescription when I ran out of drugs I just got more. They could not tell me anything new, so I stopped listening. I think I went about seven years without seeing a doctor or anybody about my AS. I had accepted that I will be in pain, so it becomes normal.
The two main positive points in my life was my Marriage and the birth of my lovely Daughter, it's no stretch of the imagination to say that priorities change when you have kids, I was worried that AS would stop me from being a proper Dad that was the single most frightening thing in my life, I was at a stage that I thought if I stop how I am I could cope but if I start to get worse I may not be able to do the things that I want to, at about this time I started to use facebook, and wondered if many other people have AS, I was surprised to how many people who was in the groups, so I joined a couple of the groups, this was the first time I had heard of Anti-TNF, most was talking about what side effects they was having, like losing vision and other scary stuff.
However this got me thinking that there must be things must have moved on with treatment as I still thought there was nothing that could be done, after talking to some people on facebook, some who have become really good friends I decided to get the ball rolling, I printed of some info on Anti-TNF, and went to see my GP and just asked them to refer me back to my consultant as it had been so long, and I wanted to explore the possibility of going on Anti-TNF and/or some Physio as I can't get any worse otherwise I'll have problems with working and looking after my family.
I saw my consultant who was very hopeful that Anti-TNF would help me, and had very possitive things to say, unfortunately was not so positive about the funding as that may be more difficult, but said that we should do this in stages and get me to cannock for an assessment, after assessment it was decided that I would meet the criteria to get onto the drug; however funding was still in question, as the Primary Care Trusts would not fund it without NICE approval.
Eventually NICE approved the drug, and I should be aloud to go on it, but weeks passed and still phone call after phone call, and no joy, eventually I was recommended to get in touch with the PAL team, who chased things up and got me funding, it was not the PCT that was holding things up but a bean counter at the hospital trust, I was angry but re leaved.
This treatment has given me my life back, not only has it halted the progress of the curvature of my spine and had some improvement I am now pain free most of the time.
It is hard to explain but a fog has lifted.
I am not cured, but it helps.
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