Positivity is key to dealing with MS
PUBLISHED: 14:00 25 November 2012
'YOU either adapt or you go under', says one multiple sclerosis (MS) sufferer who believes positivity is the key to living with the disease.
Two long-term sufferers have told the Mercury what MS is like in the wake of the death of Monica Cooke, who starved herself in September after the disease caused her to suffer a loss of dignity and a quality of life which would see a ‘dog put down’.
The condition is caused by parts of the nervous system in the brain and spinal cord becoming damaged, often resulting in loss of mobility and bladder control as well as muscle weakness and speech problems, although symptoms vary from person to person.
Mum-of-two Sandie Cheshire, aged 67, of Hanover Close, Weston, has been living with MS since 1984 and has been taking care of herself, having divorced from her husband several years earlier.
Although Sandie needs a scooter to get around in town and has to catheterise herself, she says being positive is the key and that she is ‘hell-bent’ on staying out of a wheelchair for as long as possible.
But the condition has had a big impact on her hobbies.
Sandie said: “I expected to be one of those grandmothers that played football with their grandchildren, but I can’t.
“But I think one of the most frustrating things about this is not being able to dance.
“I always used to be the first one on the dance floor and the last one off.
“I used to be very sporty. I used to do a lot of sport and now I can’t, it is very, very frustrating.
“But I count myself as lucky because I don’t need a chair and I can still speak.
“I am so hell-bent on not being in a chair that I push it out of my mind. I am on my own – a lot of my friends that have a chair have husbands that can help them.
“I don’t want to be a burden to my children.”
After being diagnosed, Sandie held down four jobs at one point, including waitressing, babysitting and working behind a bar.
She added: “I just thought ‘I have got to get on with it’. I think having a positive mental attitude helps.”
Asked about what happened to Mrs Cooke, she said: “The trouble with MS is that it affects different people in different ways. I am lucky I have had it so long and I can still walk.
“Other people can get it and they are quickly in a chair.
“I can understand not wanting to be a burden, because I don’t want to be a burden to my children, and yes, you do want to die with dignity.”
She added that the motability service, which provides blue badge holders with a car, has been a ‘huge boost’ to her quality of life and recommended it to others.
Married couple Richard and Brenda Shorrock, of Brean Down Avenue, have also been living with the condition since 70-year-old Brenda was diagnosed 24 years ago.
Brenda said: “It is a very frustrating disease because most people who get it are usually really active, and of course it puts a stop to that.
“My legs were the first thing to become uncomfortable.
“I had one or two nasty falls, I can’t walk outside at all. I find it difficult getting in and out of the car.
“It’s a challenge but as you progress you tend to adapt. You either adapt or you go under.
“Mental attitude is vital, to be positive at all times. There is no other word you can use.”
Brenda said she is thankful for the years she has had and feels sorry for young people struck by the condition early in their lives.
Brenda added: “I am very grateful for what I have got in a way, because at the exercise class there are so many young ones who have it badly. It’s sad because they are very poorly.
“There is a young man aged 23 who said he would get rid of it, he was determined to beat it, he forced himself to walk to down the corridors instead of use a chair.
“But now he’s very poorly, he can’t walk or get out of bed.
“I feel desperately sorry for him. He probably won’t live past 40.”
But even those who do manage to lead relatively normal lives often face challenges.
Sandie said: “What really gets me is when people park in disabled spaces when they are not disabled.
“When I am in my scooter, people walk towards me as if I can get out of the way. Why don’t people understand that I can’t go down the kerb on my scooter?
“You seem to be invisible and people don’t seem to see you.”
Brenda also explained that she would like to see employers being more understanding of MS.
She added: “I understand that some people have it and lead normal lives, but then they have a bad day.
“When that happens, it’s okay, but if it happens more often at their job they may eventually be asked to leave.
“I would like employers to be more aware of MS, to allow them to be more flexible with their time, go and have a nap for two or three hours and then come back and face challenges rested and restored.”
Those with MS or who have recently been diagnosed should contact The MS Society North Somerset branch, she said.
The society provides regular social activities for members as well as offering emotional and financial support and legal advice.
It is currently seeking volunteers to help it raise the £20,000 a year it needs to provide counselling training, exercise classes, support and social trips.
To find out more or to get involved, call 0800 1114780.