My first intimation that I had a problem was back in 1979 when, as I was hurrying along Baker Street (I then worked in Harrow) on a cold London foggy day, my feet in my smart business shoes felt quite numb. Reaching the warm meeting room, I was surprised to find that with my shoes off under the desk nothing improved. I sought no help with this although it happened whenever I was walking on cold pavements and at that time it did not affect my hands.
After retiring in 1984, I joined a bowling club. I was a very fit 60 year old and ready to take on the world. That autumn season when the first mists came down, my hands turned almost black and were excruciatingly painful. This condition persisted whenever I was outdoors and it was cold.
My doctor informed me that I had Raynaud’s and prescribed the usual actions to take. I lived with this for many years and in fact bowled until I was 81 years old.
In 1995 (age 71) I had an operation for bowel cancer which was successful. The next year I approached my doctor as I had little red spots appearing on my face and in particular on the lips and he said that six months prior he would have said that it pointed to bowel cancer but there had been strides in discovering other avenues and he thought I had CREST. He then explained what it was and arranged for me to see a Consultant Rheumatologist, when his diagnosis was confirmed.
I have problems with my oesophagus, lungs and calcinosis and have tests for these every year. In addition, I also developed Sjogren’s Syndrome (no tears and no saliva). So, my condition is one of irritations. I am short of breath, I can only eat very small amounts at a time and have to avoid bread and potatoes (they stick in the gullet), I am forever putting drops in my eyes and sucking saliva stimulating tablets and I have painful areas of my hands and feet where calcium breaks through the skin. I have to go to the hospital for my dentistry as private dentists cannot get into my mouth as it will no longer open wide enough.
As I have been taking steroids for years my muscles are weak and walking is difficult. However, I am determined not to let it get to me. At 86 years old, I still run the retirement fellowship (50 people), take an art club avery Friday (in my own studio), attend another art class on a Monday, put on the local Feast Week art show every year and am president of Probus and social secretary for the church. In addition, I still garden (with some help now) and besides painting, I embroider, knit, do parchment craft and live alone unaided except for a cleaner who comes for 2 hours a week.
My philosophy is that while I can walk, talk and stay upright, I shall not let Raynaud’s and scleroderma defeat me. When I read Hot News, I feel for those who are only just coming to terms with this aggravating disease. It may be a difficult time but smile and soldier on - there is little else to do!
June Law, Leics
