On a good day Janet Maclaren is accepting of the cards she has been dealt in life, or as she likes to put it, “a really rotten hand” which she has no choice but to face.
She enjoys sitting in the doorway of her listed cottage in Newtonhill, although it has been years since she walked down to the end of the road and drank in the clifftop views out to sea.
Now 60, Janet has been living with the devastating impact of multiple sclerosis (MS) for 16 years and she now relies on a wheelchair for mobility, alongside the help of her partner, Iain Burt, and a carer who comes every morning to help Janet get washed and dressed.
Her complete dependency on others is a far cry from her previous life when she worked doing marketing for the tourism industry, before going on to have her son, Tom, who is now 20 and travelling in Vietnam.
It was only after his birth that the condition struck, but Janet put her symptoms of extreme tiredness down to being a new mum.
She believes many people are unaware of MS and hopes more money can be poured into research to find a cure.
From uncontrollable tremors to extreme fatigue which can leave Janet in bed for days on end, she wants people to understand the condition.
“I always find it interesting when people say I suffer from MS; it’s not how I would describe my situation,” she said.
“I don’t suffer, I have a lot of time to think and I always say that if you got dealt a rotten hand in poker, you wouldn’t throw your cards back and refuse to play.
“Prior to my diagnosis I lived life in full colour like a photograph, and then it gradually faded to sepia, that’s what life feels like with MS.”
“When I first went to the doctor I was misdiagnosed which is very common with MS. I was tired all the time and was told to lose weight and exercise more.
“But the harder I tried the more exhausted I became. I knew deep down something wasn’t right and I honestly thought I might have cancer.
“I saw a different doctor and I think he knew straight away, although he didn’t say. He said I needed to go and see a neurologist for tests.
“Those were my ignorant days when I had no idea what a neurologist was.”
It was a year before Janet was diagnosed with MS, by which time she had researched her symptoms and believed she had the condition.
“It came as a relief in a way to know that this is what I had, at last all my symptoms made sense,” she said.
“I was diagnosed with Primary Progressive MS as opposed to relapse and remitting, meaning I don’t have periods where I feel better.
“It just gets worse but the scariest thing is the unknown, because nobody really knows what is going to happen to me.”
Janet has relied on a wheelchair for the past five years and believes one of the biggest challenges has been people’s reaction to her.
“The attitude of others is very difficult because they don’t know what to say,” she said.
“People know of conditions such as Parkinson’s but MS is silent, there’s no poster campaign for it and people just tend to ignore the whole thing altogether.
“In terms of MS itself, it’s the tiredness which is so debilitating.
“It constantly feels like I have the flu, and the only way I can describe the spasms is like being poked with a cattle rod.
“It’s like an entire body contraction and the sheer force of a spasm can throw me out of my wheelchair, I have no control over it.
“I suffer from tremors in my hands and I’ve lost sensation in my legs so I need a hoist and a sling just to get into bed, and a special chair for the shower because I can’t stand up.
“My speech can sometimes go and I find it difficult to concentrate, so sometimes I avoid talking at all.
“Everybody is different with MS. I could lose control of all my muscles or lose my speech but I try not to think about it.”
Janet can attend the MS centre in Aberdeen for support and alternative therapies, but she’s happiest when at home where she can control the environment.
Noisy social occasions such as coffee mornings are impossible because Janet struggles to focus on conversation, but she has found comfort in writing a diary.
“I don’t view it as therapy, it’s just getting my thoughts down on the page because this is an awful lot to deal with,” she said.
“It makes me angry that not enough money in my opinion is pumped into researching MS, it’s the forgotten illness and there’s no cure.
“I get on with things because what else can I do, but I don’t want people to be left in any doubt as to just how awful MS really is.
“If I didn’t have physiotherapy I’d be rigid and my partner now looks after me. This is the 21st century and yet no cure has been developed for MS.
“In my eyes that’s just completely bizarre. I don’t think there will be a cure in my lifetime but I hope for the sake of others that one can be found.
“People need to talk about MS, because once the conversation is started, changes can actually happen.”
What is MS?
Multiple sclerosis is an unpredictable and often disabling disease of the central nervous system and disrupts the flow of information between the brain and the body. The cause is unknown, and two to three times more women are being diagnosed with the disease than men. Fatigue, pain, muscle weakness and vision problems are all common symptoms but they vary with each case.
There is currently no cure, although symptoms such as inflammation can be reduced by taking “disease modifying” drugs.
