Life thrown into turmoil by MS

LIKE many couples Christine and Jim Dimelow were looking forward to a happy retirement on the golf course, walking their dogs and holidays abroad.

But they have had to make significant adjustments to their dreams to accommodate Christine's multiple sclerosis.

At times it has been an emotional roller-coaster for their marriage, with countless compromises needed to adjust to living life with such a devastating illness.

Christine, 59, and Jim, 60, have been married nearly 40 years with three grown-up daughters Sarah, 34, Rebecca, 32, and Sally, 25. Before the illness, their life was a hectic round of work, children and family life.

As active members of their local community and, with a full social calendar, Christine hardly had time to think about being ill.

So when a severe virus was diagnosed, Christine and Jim did not imagine that her medical problems would be more than just a blip.

With another move due to Jim's blossoming career, the couple were soon caught up with house- hunting, changing the girls' schools and settling into their new home.

While decorating their new home, Christine began to feel strange tingling sensations in her leg.

Over a period of months she began to feel tired, yet unable to sleep, and became convinced something was seriously wrong.

With her own job, supporting Jim's career and running the family home, she was finding it increasingly difficult to cope. Jim became so concerned he used his private health insurance and managed to get Christine referred to a neurologist.

Christine said: "I was becoming more and more frightened. I was having all these tests with no real outcome.

"Eventually the neurologist told me he thought it was a severe virus and, with intensive steroid treatment, my symptoms would gradually improve.

"But it didn't help at all apart from me getting puffy."

As she searched for a diagnosis to match her symptoms, Christine became severely depressed, lost weight, couldn't eat and clung to her husband for reassurance and support.

Jim said: "I was leaving at 6:30am and not getting home until 8:30pm. With a very demanding career, three children to support and Christine unable to work too many hours, I felt very responsible.

"We kept as much as we could from our daughters but it was a very emotional and frightening time.

"It became difficult to maintain a normal family life when Christine's health was so erratic and with no clear diagnosis."

It is testimony to their strong marriage that Christine and Jim's relationship remained intact, although there were times when their marriage was really tested.

Christine was finally given the diagnosis she dreaded after an employment medical for a new job highlighted the condition.

"My GP read the medical report and told me 'you have multiple sclerosis. I have had patients with it that die young and others that are still alive in old age'," she said.

Christine has been unable to work for ten years and, as her illness has progressed, there are indelible memories of the encroaching nature of her illness.

The first time she had to use walking sticks to aid her balance and co-ordination; the first time she could no longer walk short distances and had to be pushed in a wheelchair.

One of the most difficult times was when she gave away her high-heeled Jimmy Choo shoes.

She said: "I loved wearing designer high-heeled shoes - it was really part of my identity.

"Jim would take me on regular shopping trips to Bond Street and I would have a great time buying shoes - they were my passion.

"So when I had to finally admit that they were no longer safe, it was a very sad day when I sent them to the charity shop."

MS has given Christine and Jim a thoughtful insight into their relationship and a deepening compassion for each other.

They talk openly and honestly about their marriage and the difficulties they have overcome, while admitting it has been a testing time.

Christine said: "It was only recently talking to my daughters I found out that they have all been to counselling to talk about the effect my illness has had on them.

"Growing up they have had to take care of me more than they would have if I had be healthier.

"Their childhood was happy but, obviously, my ill health has had an impact on their lives."

Christine is insistent that even today not enough support or information is available to MS patients and their families.

"After being given medication and told there was nothing more they could do for me, apart from six-month check-ups at Southampton Hospital, Jim and I were left alone with our fears.

"I believed I would never live to see my daughters grow up and that I would probably die within a few months."

Jim has not escaped the impact of caring for a partner with MS and, when he was forced to take early retirement, he suffered deep depression which was only alleviated with anti-depressants.

He said: "It was easy to push Christine's illness to one side and almost forget she had MS.

"When I was working, in some ways my career became a refuge from her problems.

"I would not get home until late evening to find Christine beautifully dressed, made up and dinner waiting.

"It was only when I retired I saw first hand on a day-to-day basis how she struggles that it really hit me hard.

"It can be heartbreaking watching the woman you love in so much pain trying to do the simplest tasks."

Jim feels he put his feelings of shock and loss on hold until his retirement and there was a definite bereavement period when he not only mourned the loss of his career but also the loss of Christine's health and how life could have been.

Jim said: "I have tremendous admiration for Christine. However, I also feel very protective and it's about getting that balance between encouraging independence whilst making sure she doesn't overdo it and put herself at risk. Even after 19 years I don't always get it right."

Christine said: "Be open to everything and try anything you feel might help.

"I have tried everything from cannabis, chocolate to counselling. All have been experiences that I would never have had if I had not been diagnosed with MS.

"Life can still be good. We have holidays, dinner with friends and I still adore clothes shopping.

"I have a wonderful relationship with my daughters and, most importantly, Jim and I still have each other."

MULTIPLE SCLEROSIS FACTS:

What is MS?

Around every nerve fibre - the pathways along which messages are passed from the brain and the different parts of the body - is a wrapping of membrane called myelin. In MS the fatty substance of myelin is broken down in patches throughout the central nervous system. The cause is unknown. It is thought that about one in 600 people in the UK has one form of the illness. Three women are affected to every two men.

What are the different types of MS?

There are four types of the condition:

Benign: Occasional relapses, usually early on, with complete remission in between. With no significant disability and infrequent further relapses, sometimes years apart.

Relapsing/remitting: At diagnosis the majority of people have this form. Relapses on average once or twice a year, with good or complete remission in between. A tendency for symptoms to worsen gradually.

Secondary Progressive: The severity and frequency of relapses decrease but incomplete recovery leads to an increase in disability.

Primary Progressive: About ten per cent of people experience symptoms that become progressively worse over a period of years without remission.

What are the symptoms?

MS affects every individual differently but common symptoms are: Pain, fatigue, tingling sensations, problems with sight, mobility and co-ordination.