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Life was good, I was twenty four years of age, married to a lovely caring man: we were buying our first home & had a lively nine months old baby boy.
My early life had been healthy & fulfilling. At the age of seventeen 1 met my future husband, Alan: we were so happy together. Walking over the Surrey countryside (often at night by the light of the moon, then watching the sun rise), swimming, canoeing cycling, theatres, concerts, holidays with friends & dancing, dancing, always dancing - Modern, Old Time, Latin American. We were both tall & slim & partnered each other well. Oh, how we enjoyed it all!
It was a lovely day in August 1958, when, on turning to straighten my stocking seams, I cricked my neck really badly and remember having a feeling of anxiety, much greater than was warranted by a minor accident. How right I was!
Several weeks of pills & neck traction followed & pain started to spread to my arms. A blood test was taken & I was told I had rheumatoid arthritis.
Rheumatoid arthritis? What was it?
There were no support groups, no detailed explanations. Perhaps it was just as well. Pain spread to most joints in my body; my hands were particularly agonising. At the same time I felt generally ill & coping with an active baby was not easy. Something I will always remember was getting Paul out of his pram as the only way I could do this was by dragging him backwards with my hands under his arms. Perhaps that is why he is now 1.95M tall!
This state of affairs continued for about three years. As well as conventional medicine I tried every way-out idea that came my way. Imagine drinking the liquid of minced grapefruit & lemons mixed with Epsom salts: an Sozs glass per day; Ugh! Or eating raw liver & having freezing cold showers. I tried them all. My state of mind was one of despair at times mixed with hope that the disease would go away.
Somehow I struggled on. Our families, friends &, most of all, my husband, were so supportive. How awful for him to have a lively energetic wife reduced to someone ridden with pain & disability. We were still young & love-making was important, but difficult. Somehow we managed & even laughed about our antics.
Cortisone treatment was the next step & overnight I was cured. Miraculous, but not for long! Apparently the drug had very dangerous side-effects & I was in University College Hospital, London, for three months being weaned off this medication. Not pleasant, as all the pain came back. Our son was looked after by some good friends, but the only way 1 could see him from the third floor of the hospital was to crane out of the window. How inhuman the rules were in those days.
Disillusioned by conventional treatments I then attended a naturopath, who put me on eight days fast of boiled water, followed by a strict vegetarian diet. Gradually things improved & I even had some pain-free days.
I have always been a keen gardener & although 1 could not get down to the ground I worked with long-handled tools & conventional secateurs. Paul by now was about seven years of age & he would do the ground level tasks that I could not manage from a standing position. As he grew older he would climb the trees in our garden to prune them. Between us we would decide which branches needed to be removed. We both enjoyed this & later he became a tree surgeon & forester. Alan was continually supportive in all ways but did not smother me with too much attention. It was at this time I started saying "I can do it" & he had the good sense to let me try.
We had always enjoyed walking in the countryside & although Alan & Paul would have gone further without me they wanted me to come with them. We would start early & walk all day, slowly & with many stops. When there were hills to climb & difficult places to negotiate Alan was always there above me to take my hand in a firm grip & get me up safely. These occasions were a triumph of will- power & although I was in severe pain the next day it was worth it for us all & gave me a great feeling of achievement.
Time passed & Paul left home in 1975 & in 1977 Alan & I moved to AIfriston, a lovely village in East Sussex where we had spent our honeymoon twenty four years earlier. By this time my hips had become very painful & one was replaced in 1978. I was only aged forty five & by the standard of the day that was too young, but the pain was unbearable.
Unfortunately, due to severe anaemia & pain I became depressed & tried to end it all. Luckily I was not very efficient & my intention failed. My breakdown lasted for about two years which was a bad time for us all. I think part of the trouble was grieving over the loss of my old home & one particular local friend who had been there for me through thick & thin. Anyway, I eventually got over that bad spell & had my second hip successfully replaced.
In 1982, feeling ashamed of my breakdown & needing something positive to do, I joined the Lewes Branch of the Arthritis & Rheumatism Council for Research (now the Arthritis Research Campaign, usually known as ARC). We decided to undertake our own fund-raising in the village & our first venture was to have an "Open Day" in our cottage, which was originally one of the old alms houses. Here we sold Christmas goods, bric-a-brac & refreshments to a stream of eager visitors. We made a profit of £79 & I was thrilled, not just with the event itself but with the feeling of self-worth it gave me.
In 1987, the year of the great storm, we moved to a larger house in Alfriston. Life was active, but sadly, so was the arthritis. At this time I was referred to Mr. Michael Freeman, a leading orthopaedic surgeon at the Royal London Hospital. He was wonderful! In the January he reviewed the original prosthesis in my left hip & replaced this with a new one & on the 28th. November, our thirty fourth wedding anniversary, he replaced both my knees.
Over the next few years I had eight joints in all replaced at this hospital & I am now taken care of by Mr. Careth Scott.
Again I am fortunate as his speciality is difficult is doing his utmost to keep me mobile. During all this time we continued with our fund-raising. We had really got the bug & we became more & more ambitious. We ran coffee mornings (our first raised £ 1356), opened our attractive garden to the public, held bric-a-brac sales & organised painting demonstrations. We also operated the ARC Christmas catalogue successfully & in our peak year we made a profit of £ 800. Alan began to make & sell garden furniture, & led walks over, & talks about the South Downs, which he still continues to do. All profits, fees etc. go to ARC & over the years we must have raised many, many thousands of pounds from all our ventures.
Through my connection with ARC I have been interviewed on local radio & television & also counselled many patients contemplating joint replacements. People find it helpful to be reassured by someone who has benefited from similar operations.
Since moving to Sussex I have been in the care of Dr. Wojtulewski, the senior rheumatologist at Eastbourne District General Hospital. He, & all his staff, are so kind & caring & do their utmost to improve patients' quality of life.
Six years ago a number of rheumatoid arthritis patients were asked to set up a support group & I have enjoyed being a founder member, & Treasurer, since the beginning. We all find it provides great help as well as being fun.
Apart from the really bad times I have always been in charge of the domestic side of running our home. Alan & I work as a team & this enables us to have friends & family to stay for several days at a time. It is my belief that it is up to me to keep as slim & healthy as possible. Although I am no longer a vegetarian, we eat a good varied diet with many home-grown vegetables & herbs. I also make excellent wholemeal bread entirely by hand, which sometimes surprises many of those who find it so delicious to eat! Although obviously disabled I love clothes & aim to look as attractive as possible.
Well, I am now sixty seven years of age & have had a total of ten joint replacement operations. It has always been important to me to keep busy & interested in the things I enjoy. Over the years I have attended classes on many topics, tended our garden & helped to organise the Village Festival, as well as driving, holidays & visiting friends. My latest venture is to attempt watercolour painting & I am sure you can imagine the thrill 1 received when I exhibited, & sold, three of my pictures.
People mean so much to me. A lovely husband, our son, daughter-in- law & our three grandchildren, together with friends, old & new, & even helpful strangers, all help to make me feel very lucky. My acceptance of life with rheumatoid arthritis has come about due to my sense of achievement & pride in doing the things I CAN do to the best of my ability, & helping others whenever possible. Life is STILL good!
27th. January 2001
Copyright ©2001 Doreen
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