A.S. Face 0534: Michael Mallinson
My AS Story
At the age of 33 I was living in our first house that we had bought the previous year. We had a 2 year old daughter, work was going well and the future looked bright. I had no inkling that the pains I started feeling running down the back of my legs would auger ill for that future. I thought I may have strained myself carrying bags of sand to make my daughter a sand box. However, the pains got worse and I noticed the muscles in my legs were getting knotted, meaning that I couldn’t walk properly at times. As an active person and a bit of a runner, I was dismayed. The pain was quite bad. After a few months or so there was one night when I took a taxi home after an evening work event. I managed to get out of the taxi but as it drove away I found that I was standing in the middle of the road unable to move. My legs just wouldn’t work.
Somehow I crawled to my front door and got to bed. I saw my family physician the following day. He prescribed bed rest. I didn’t get any better with bed rest and when, after two weeks, I dragged myself off to work again, I felt weak, exhausted and full of pain in my lower back and legs. And so it started, the sleepless nights, the pain of walking, especially on rough surfaces, even the inability to walk at times. I saw my doctor again and so started a long journey without answers. I went to physiotherapy and was subjected to traction. It did nothing but hurt me. Over-the-counter medications had little or only a short term effect. I talked to work colleagues and friends who had had back pain to discover that for them it was a short, severe episode that they soon got over.
My back began to hurt in such a way that I could hardly find relief. I spent nights trying to sleep on the floor because the bed was too uncomfortable. At times I couldn’t lift my daughter or carry a laundry basket. I noticed I was losing weight, particularly off my buttocks. Sitting became agony. My doctor persisted with physiotherapy without my finding any comfort in it. He never did prescribe medications for me.
This went on and on for years. I was tired and depressed. The depression worsened as the pain persisted and I began to think that I was losing my mind. Who else slept sitting upright for three years because of back pain? Who else found life so miserable in their mid-30s? It affected my family life because all my energy went into going to and coping with work. I’d collapse in the evening and on the weekends. Except for those odd, far between but very welcome days when I felt fine, I just felt ill both physically and mentally. And of course on the days I did feel fine I would overdo things and pay for it the following days.
In desperation I turned to a chiropractor. I went frequently, starting at two and three times a week, and at great cost because visits were only partially covered by the Ontario Health Insurance Plan. I found some relief in the treatments. I could feel muscles relaxing and I learnt how to use a tennis ball to massage and undo knots in my legs and back. I had hot baths at 3:00 am. A heating pad became my best friend. I needed several pillows to prop my legs and keep me in a tolerable position. I did stretching exercises on the floor at odd times.
My visits to the chiropractor extended over about two years but I noticed that after the first few months the relief didn’t last very long. In fact it got to the point that even before I got back to my car from leaving the chiropractor’s office I was in pain and movement was difficult.
One day I told the chiropractor that my legs hurt all the time. He looked at me and then walked to a back room coming back with a large book opened to a page where there were a few paragraphs about a disease called Ankylosing Spondylitis. “I think you have this.” he said. “I’ll write a note to your doctor”. He gave me the note and a photocopy of the page. I went home repeating “Ankylosing Spondylitis” to myself. I had never heard of it.
My doctor took the note and said “On, there was a suggestion of this eight years ago”. After I had blood tests and X-Rays and visited a rheumatologist to confirm AS, I fired my doctor. I was 43 and for ten years had suffered AS without diagnosis.
Shortly after my diagnosis I got in touch with The Arthritis Society and through it, the Ontario Spondylitis Association. I have been a volunteer with them ever since and also took on a volunteer role with the Canadian Spondylitis Association when it was founded. My reason for doing so? I could not believe how long it had taken to diagnose my condition and I did not want anyone else to suffer as I had for so long if we could help educate health care providers and the general public about this disease. I also felt it important to help people who were newly diagnosed if like me they had felt alone and desperate during their journey with AS.
In many ways I was fortunate. As someone who had been active in sports all through and after school and university I had kept up my running, which was preceded by stretching exercises. I feel that the stretching enabled me to keep posture and maintain flexibility. And another way I was fortunate is that soon after diagnosis my disease seemed to recede as my spine fused. It happened surprisingly quickly. I was out for a walk in the Spring and saw a runner stop to stretch. He was able to grab his ankles and keeping his legs straight, bend all the way forward so that his ears touched the inside of his legs. I thought to myself that I had to get more serious about stretching if I wanted to run again. But, by the Fall as my spine fused I was unable to do the everyday stretches I had been doing in the Spring.
I have been living with fusion and remission for the past 20 years, not a bad lot in life, but the memory of those ten terrible years of pain, sleeplessness, fatigue and depression stay with me. If I can help anyone with AS know that they are not alone and offer support and encouragement to them, my 20 years of volunteering in the AS community will be worthwhile.