Neil's Story

My story begins as a fit, 28 year old man in 1983, off to work on a normal day. As I cycled on a road sat between two fields, I noticed a low flying plane heading in my direction. Suddenly, it sprayed (obviously crop spraying) the fields and I couldn't avoid gulping the air of this 'chemical mixture' which I thought was a bit 'yuck' but carried on. I quickly noticed that my hands were swelling and in particular my left hand seemed very big.

I arrived at work some 10 minutes later and remember showing my work mates my hand and telling them the story. My hand soon returned to the normal size but by the end of the day my left shoulder was really sore. Over the next few days different parts of my body severely ached. By the end of the week I was on my hands and knees crawling painfully to the loo. My nurse wife (and me!) was worried. I saw the GP and he suggested I might have polymyalgia. For a short period he gave me steroids (which worked), and referred me to a rheumatologist. After a few months I was diagnosed with ankylosing spondylitis (AS).

Further reading suggested that this was a 99% genetic illness (HLA-B27+ve Antigen) yet there is no known family history before or after me. I have five brothers and a sister who are all ok, and two healthy children who had a 50% chance of inheriting the gene and a small chance of developing AS.

Anyway, I must have somehow inherited the gene (maybe it was the milkman) but I am 100% sure that it was triggered on that day by whatever that plane was spraying. I often wonder if my disease is something else (but similar) but I am told my symptoms are classic AS. The doctors were never interested in my story that it was triggered by crop spray.

My mobility is poor: I have fused cervical vertebrae so that my head is fixed 90 degrees to my torso. It fixed like cement over only two years. I can't look anywhere else except the floor. It was very painful but less so once it completely fused. I am now in my fifties with my chin pushing into my chest and in recent years my lumbar spine has started to protrude again and bend outwards - like a hunch back. It's very painful and the pain intensity goes up and down with the weather.

Initially, around the time of diagnosis, I remember that I couldn't stand sun light. I couldn't keep my eyes open in strong light - tears rolled down my cheeks. I had to wear sun glasses when driving or cycling. I started to realise (early on) that my spine was very achy on wet days and much better on sunny days. Over the years it was noticeable that tighter isobars on stormy days were extremely painful and my fatigue is far worse as the storm approaches, and starts to ease as it passes. At the end of 2015 there were so many low pressure storms (a ridiculous amount – about 20 – one after another). They nearly all seemed to come from across the Atlantic and I could feel them coming. Such is the severity of the pain and the rain that I can feel a rain cloud passing over. For a few years now, I have slept next to a dehumidifier (instead of the wife – it's not as exciting!). The dehumidifier is only on at night. I think it helps, collecting about 7 litres of water a night.

I noticed from weather forecasts that when the rain occasionally arrives from the south it quite often has a warm front. I do feel these but generally I seem to be able to cope with them better. I suspect the warm front is a big factor when it comes to measuring pain severity. When there is high pressure, clear skies and very cold in winter, it is a different sort of pain but more tolerable. However, if pressure is too high on a hot summer's day, then I don't like it. In summary – I like it dry warm but stable pressure. I need to live somewhere else. Britain must be one of the worst places for fast, unpredictable, changeable weather.