Tag Archives: rheumatoid arthritis

I’m Still Learning

For my wife to be given a ‘sentence’ of an aggressive and disabling form of rheumatoid arthritis certainly wasn’t on our agenda when we married. Neither did I expect to be diagnosed with chronic fatigue syndrome (M.E.) not long after taking early retirement. These chronic illnesses changed the direction of our lives for ever, but although they were the cause of much grief and struggle, we have so very much to be thankful for and strangely, I wouldn’t have it any other way. It has been a life-changing experience so far and this continues – we are still learning. What I personally have learnt and am still learning was on my mind today and these are just a few thoughts:

1. Fun. There are times when I have to remind myself not to take life too seriously and find time for fun. Yes FUN! It helps to have a sense of humour. Mine gets buried at times and I need to let it out and even take the risk of offending some. Continue reading

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Filed under biography, Christian, disability, illness, lifestyle, M.E., retirement, spiritual

The Thirty Nine Steps

My wife is the Guest Blogger this week and writes about living with an illness long term:

The Thirty Nine Steps

We really welcomed our move to Cornwall. There had been some delay. We headed an ever-growing chain of interested buyers, so made the decision to arrange a bridging loan. It was risky, but John had to start his new job. We were separated for a time, but eventually moved on 5th November 1972 in the rain.

Our children – six and three – thought our new house was great, with bedrooms downstairs built into the hillside and 39 steps up to the front door. They ran up and down and in and out excitably. The beach was just down the road – a new adventure to be lived. Continue reading

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Filed under biography, Christian, chronic fatigue, disability, family, healing, illness, personal

Carer or Sharer

This is a personal account of how I have lived with chronic illness for over thirty years and how it has been used to change my life. A husband’s viewpoint.

My wife was a real carer. It was part of her make-up. She would have made a good nurse, but gave herself sacrificially to being a mother, wife and home-maker.

After about nine years of marriage we moved to the Cornish coast because of my work. To live by the sea was like a dream come true. We saw it as a new start. Within the first year however, things began to go wrong.

My wife was already experiencing pain in her feet and not long after arrival, she was diagnosed with chronic rheumatoid arthritis, a progressive and disabling autoimmune disease. This ‘sentence’ came as a shock for her and she was quickly admitted to a hospital in Bath for three weeks specialist treatment. Within days of returning home however, she had news of her mother’s deteriorating health and travelled up country to see her. Her mother had painfully struggled for years with rheumatoid arthritis and it was our plan for her to come and live with us, once we had settled in and prepared a room for her.  Unfortunately this wasn’t to be, as she passed away ten days later. Continue reading

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Chronic Fatigue and Family

tn_family.jpgMy viewpoint as a husband and father – I’ve tried to keep it brief!

Chronic illness is a daunting challenge to a marriage relationship and family unit. Some say it can be make or break. In our case, we had a double whammy! Over thirty years ago my wife contracted a particularly aggressive form of rheumatoid arthritis and was told she could be in a wheelchair inside four years. Years later, long after our children had left home, I was diagnosed with chronic fatigue syndrome.

My response to my wife’s diagnosis wasn’t surprising, as my upbringing hadn’t fitted me out to deal with illness. In my childhood, any suffering or indeed any expression of emotion within the family, was kept mainly under wraps. My way of dealing with these things was to do something practical to try and hold things together. I put everything into my work, family and helping out where I could within the community. I did most of the shopping, including, for a time, buying my wife’s clothes and became an expert in the intricacies of M & S’s lingerie department. Our children attended the village school and we became involved with the some of the other parents and attended the church. I ferried our children and their friends to the various activities.

My wife made her role of wife and mother her topmost priority and gave her all, often sacrificially, she had high standards. She was a good listener and it was quite usual for me to arrive home to find the pile of ironing still untouched, because she had given several hours to someone in need. I found that difficult, as she was the one needing physical help. But apart from several notable exceptions, there was little of that.

As the rheumatoid activity increased, she became more physically limited and fatigued. It was easy for me to leave for work in the morning and bury myself in my work while she often spent the day lying down. This was the side most people didn’t see. She found the pain and physical limitations were hard to bear and there were frequent outbursts of expression. I found it increasingly painful to watch my wife, my loved one, in so much pain and distress and I felt so horribly helpless. One night when it got so bad I went down on to our beach in the dark and in desperation reached out to God from the depths of my being, imploring Him to help us.

I felt trapped by the illness and restricted, held back. Once, I was asked if I had thought of leaving and I can honestly say that was never ever on the agenda. We married because I loved her and was committed to our marriage. On the other hand I wanted to escape from the illness, I hated what it was doing.

In our search for understanding, we were led over the years along a path of Christian contacts. We learned new marriage communication skills and how to deal with the emotional pain that was bubbling away just below the surface. I also found healing and release from the grief and loss I was experiencing. Our attitudes changed and in particular people were noticing how well my wife was walking and the courageous way she was dealing with her illness.

Then I was diagnosed with chronic fatigue syndrome ME/CFS and I had a new battle to contend with. For the first time I was able to understand first hand what fatigue was like and I benefited from my wife’s experience. The effect this had was to draw us closer together than ever before.

So far as our children are concerned, yes, they did miss out on some things, they can hardly remember their mother well. But I believe the experience has enriched them and we are proud of the way they now handle themselves, their marriages and children.

The last two years have been the most difficult for us, our lives being battered by accidents and illnesses. But in it all we have continued to experience wonderful strengthening and enabling to do what seemed impossible. I don’t know what the future holds, but we know God is with us and the best is yet to come!

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