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It seems like a lifetime ago that I was a fit and healthy 41-year-old active married woman, running a home and working full time for my husbands business. Little did I realise that less than a year later simple tasks that I took for granted were to change so drastically.
I then found myself going through a divorce that was very stressful. In the middle of this unhappy time, I woke up one morning to find all my fingers were very stiff and painful. My right wrist and knuckles hurt to touch, I tried to shrug it off thinking I had strained them so I took painkillers. I thought this would get rid of the pain. After 3 weeks of getting no relief, I had booked an appointment to see a doctor, as by now they were swollen and if anything seemed to be getting worse not better.
That visit I remember very well to this day, this was to alter the course of my life. My doctor requested a blood test and added to me I really hope this is not Rheumatoid Arthritis. I really did not know why he was so concerned, I never knew anyone with this problem. In my innocence of the disease I thought he will give me some pills and it will go away, how wrong could I be?
I was diagnosed with Rheumatoid Arthritis and was subscribed pills to take. They sent me to the hospital to have a cortisone injection and was told that was all they could do for me. I really wish someone had sat me down and explained it all to me. I wish I had known what was about to happen to my body and the highs and lows of how it would affect me in the years to come.
I remember going through a time of being afraid and wondering how I was going to cope with things. I had to go out to work to survive as I had no one to pay the bills to keep a roof over my head. I also had started dropping all sorts of things. Pints of milk would just slip through my fingers and saucepans of boiling water that were in my hand one-minute and not the next. It was as though my hands had a mind of their own.
I then had horrendous pain, which I had never experienced, the tiredness and feeling under the weather all the time. I put this down to working hard in a demanding job as I was now a fashion accessory buyer for a department store with staff to supervise. I was responsible for all the buying for six departments, a job I hasten to add that I loved and enjoyed. It was my job, staff, customers and friends got me through some of those bad times in the early stages of being diagnosed.
Thoughts would go through my head, why me, what have I done to deserve this horrible disease. By now, my right hand was decidedly looking deformed. I tried to help myself by taking vitamins and having acupuncture but I still was feeling drained and would go home exhausted. I was too tired to cook, I would grab a sandwich and fall into bed to wake up feeling the same the following day. It must have been the love of the job that kept me going for another 7 years.
My hands were getting worse, then my back started playing up and pain carried all down my groin so that I could not put my foot on the floor. I was laid up in bed for 2/3 weeks at a time, deep down I knew I was getting worse but I would not accept it and would put it to the back of my mind. I still did not understand the full consequence of what I was going through.
I knew that the rheumatoid was getting worse and it was now in my hands, shoulders, back and knees. Being a strong and positive person, I knew I had to keep going to survive this. I have always made an effort to look smart have my hair, nails and make up done and by now this was taking me longer to do. I always remembered when I was younger I was told no matter how you feel inside or how much pain you are in, always go out and look the best you possibly can. My looks do not pity me and I would not want that.
I lived in Brighton, my Mother and Brother lived in Eastbourne some 30 miles away and I now felt I needed to be nearer to them so that I had family close for support.
My mother worried about me, so I found a flat and moved to Eastbourne, got a job in a small shop but it was heavy work. I dealt with luggage, it involved a lot of lifting, and by now, my shoulders and hands were giving me trouble. I was asked to go back and manage the millinery department in the store that I had left, but I was now over 30 miles away. Could I cope with commuting by train every day, as the hours would be longer than ever with an hour’s journey each way?
I managed this for just over three years. Everyday I was up at 5am and got back at 7pm at night. Two days after starting I was trying to lift something and my back and left leg went. I was in bed for 2 weeks I went to my doctor, he asked me how long I have had the rheumatoid arthritis, and I told him 9 years. He asked me if I would be willing to go and see a Specialist, I agreed. The appointment came through and I underwent X rays and explained to him how it affected all the different parts of my body.
We got the X-rays back with devastating results and the only options available were operations on my shoulders, knuckles and wrist. I was placed on the waiting list for 16 months, in the meantime the Occupational Therapy department made splints for my hands to help relieve pain. They were so good and helpful to me and they made me face the disease head on, no more pretending it would go away. I cannot tell you what that did to me. I was angry, upset and frightened, it was now causing me so many problems. By now the pain was getting worse I could not get my arms up in the air, had problems getting dressed, washing, getting up from sitting in a chair and walking, doing all the things we take for granted.
The occupational therapy team were brilliant they gave me books to read, they showed me diagrams and recommended all sorts of things to make my life easier for me.
When I got home it finally started to sink in there was no cure for this awful disease and I cried and cried. I was scared at the thought of being in a wheel chair or even worse bedridden.
As I said earlier I am a strong and positive person, I thought I am going to face this and get on with it. I could still work, nothing had changed except I could not function as well as other people, but I was still up on my feet, my limbs were still there. Therefore, I was going to fight this and not give in. I had so many good friends who were there for me.
The hardest thing was being out, people would stare at you or point. I would be trying to do something in my own way and people would be poised to jump in and do it for me, this was upsetting. I wanted to be independent and do it myself, in my own way not conventional perhaps but my way.
Then the day arrived for the first of my many operations, little did I know this was to be the end of my working career. I was petrified, but the occupational therapists and theatre team reassured me and helped me through this first stage.
I began to deteriorate quite rapidly and my walking became a real struggle, I was admitted to hospital for bed rest. At this point, the doctors decided to X-ray my hips and back only to find that the arthritis had developed, I was told I would never work again in retail, this was harder to face than accepting rheumatoid arthritis. You can just imagine how low I felt as I was determined to push myself and carry on but my body was starting to let me down.
Since that day some four years have past and I have been through 10 operations on my hands, hips, knees and feet. Depending on how the disease progresses I am sure I have plenty of operations to follow. I feel I am now in a better position to accept what is coming to me and dealing with this has made me stronger, although I do put on a brave face. I still feel scared and vulnerable at the thought of not being able to cope with life and wondering what all the drugs are doing to my body.
I have accepted this disease in the best way I can. I am virtually housebound now, I have been using crutches for four years due to my loss of balance. My mobility is limited to taxi’s and the help from friends. I am always on the go and like to keep as active as I can. I know physically there is little I can do to improve things, I attend hydrotherapy sessions as often as my operations allow and I am an active member of RASCALS, which is a support group for rheumatoid arthritis sufferers. We meet once a month and have various activities and trips and share our experiences with each other.
I have recently got a computer through the Cottage Homes, a charity for the fashion trade. I have been to a local college to acquire skills in Microsoft word and using the Internet, this has helped me gain information relating to arthritis and chatting to others all over the world with similar problems. I am very grateful for the help they have given to me. Without their assistance, none of this would have been possible. Perhaps now I will be able to help other people come to terms with this awful disease.
The Occupational Therapy Dept suggested that I do cross stitch to help keep my fingers moving. I have now taken this up as an active hobby and feel proud of what I have produced.
On reflection, writing this essay has helped me look back at what I have been through, emotionally as well as physically and what I have achieved over the years. I feel lucky to have had the life before rheumatoid arthritis as it has helped me on the long way to acceptance of my chronic disease.
Copyright ©2001 Jacqui Page
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