Tuesday 26 March 2019

Fighting back: How wonder drug and lifting weights makes this woman with MS feel like Superwoman

Susan Carey is crazy about sport. So, she tells our reporter, it came as an awful blow when she was diagnosed with a condition that is often debilitating. However, she fought back and now regularly pumps iron at the gym

Sports man: Susan Carey. Photo: David Conachy
Sports man: Susan Carey. Photo: David Conachy

Joy Orpen

Susan Carey was told she had a life-changing medical condition in 2004 - she was only 14 years old at the time. But looking at her now, there is no doubt that getting such a devastating diagnosis does not mean the end of the road; not by a long chalk.

Susan, who grew up with two sisters, in Spa, Co Kerry, says sport was always an important part of their lives. "The Careys are big into basketball," she says. "I've even got an All-Ireland medal for the sport." Golf is another abiding passion for the family, who frequent the Tralee Golf Club. As a young teenager, Susan was already an active junior member of that club, and that's where she began to suspect something was amiss.

"I couldn't understand why I couldn't hit my golf ball," she recalls. "I also had problems playing basketball. But eventually I realised I was seeing two balls, instead of one. So mum took me to the optician." Having examined her, he immediately referred Susan to Cork University Hospital (CUH). Some 48 hours later, she had already been admitted, and was undergoing a battery of tests, including a lumbar puncture.

And even though she was in hospital for more than two weeks, she didn't question what was going on. "At 14, I didn't have a clue," she says. "I just assumed the adults would sort it out." Two weeks after her discharge, Susan returned to the paediatric neurology department at CUH for a follow-up consultation.

"There were others in the room," Susan recalls. "They did various basic neurological tests, such as getting me to follow their hand movements with my eyes. Then I was asked by the consultant to leave the room, and that's when my parents were informed that I had multiple sclerosis (MS). I was then brought back in, and I was told. I had no idea what MS was, and I couldn't comprehend what a neurological condition was. But it became clear that this was not just about getting glasses - it was much more serious than that."

According to MS Ireland, MS causes myelin - which protects the pathways from the brain to the spinal cord - to become damaged. When these pathways are affected, they "distort or even block the flow of messages, resulting in the many symptoms of MS".

After that, Susan spent a week in Kerry General Hospital being treated with steroids. The treatment also caused her eyesight to improve significantly. Subsequently, a nurse from MS Ireland visited her at home to show her how to give herself a weekly, MS-specific intramuscular injection. "In the end my father did it, because I was too terrified," she explains.

As time went on, Susan became increasingly distressed. "I used to be on sports teams. I was outgoing, bubbly and at the centre of things. At that age, you care about what people think," she says. "I was ashamed and embarrassed to tell people I had MS. I thought I wouldn't get a boyfriend and that my friends would drop me."

Nonetheless, Susan soldiered on as best she could. However, when she was 16, her right leg began to buckle, while her levels of fatigue increased. "Within three years, I'd given up all sport," she volunteers. "It was heartbreaking. I'd been a team player; now all that was gone."

As the Leaving Certificate drew ever closer, Susan began to look at options for third-level education. "I'd been advised to aim for a desk job, so I ended up studying business in Tralee. But all I had ever wanted to do was sport."

Susan's social life was also affected. She couldn't wear high heels, and she couldn't dance, because her balance was affected by MS. She couldn't really drink, because that made her feel worse. Fortunately, she had understanding friends. "Even though I knew they wanted to dance, they'd stay and sit with me," she says.

The year of her Leaving Cert, Susan and her whole extended family was dealt a terrible blow when Fionan Carey, her much-loved 18-year-old cousin, was killed in a terrible accident. The pair used to spend all their free time together.

"He was like a brother to me," says Susan. "It was all so tragic, especially for his own mum. The shock caused my central nervous system to go even more haywire. I'd have to hang onto the furniture to get from my bedroom to the bathroom. I ended up in hospital."

Following their tragic loss, Susan went for grief counselling. "I cried so much it felt like my chest was caving in," she says. "It turned out I wasn't just grieving for Fionan, I was also grieving for myself."

Susan says the counselling helped her cope. "I found the process exhausting, but nonetheless, it helped me come to terms with losing Fionan, and my disability," she says.

In 2010, Susan began using a specific drug for MS. "My legs got stronger," she recalls. "I started going to gym and I joined a fitness group in Cork. Exercise causes endorphins to be released; these lessen pain and make you feel better. It helped me channel my negative energy into positive energy. Lifting weights also makes me feel powerful. Seeing that some young lad next to me can only do a fraction of what I can do, makes me feel like Superwoman!"

However, a few years later, that drug became less effective, so Susan's neurologist suggested she try another one, that was fairly new on the market.

Fortunately, that drug worked for her. Nonetheless, in 2012, and again in 2014, she had a relapse, which caused her to end up in hospital. But each time she fought back, until she was on her feet again.

Currently, Susan is doing really well. She has a part-time job as an administrator in a car dealership, and in her spare time goes to the gym and to a driving range. She has two ambitions in life: one is to get involved in the promotion of sport in relation to disability.

"I'm involved with the local MS society, and that's helping my confidence," she says. "I know what it's like to feel really low. So I'd like to help people with MS feel empowered again."

And her second dream? "I'd love to teach myself to play golf again," she says. "Then I could hit some balls around the stunning course at the Tralee Golf Club."

As to this often difficult and demanding personal journey, Susan says: "It's not all doom and gloom with MS. No matter how bad it got, I always had a smile on my face. I am blessed because I have amazing parents, a wonderful family and Mary Ellen Dineen, my best friend, is absolutely my rock.

May is Kiss Goodbye to MS month, when crucial funds for research and essential services are raised. To donate €4, text KISS to 50300, see kissgoodbyetoms.ie

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