Belfast Telegraph

Northern Ireland mum tells of how chronic sleep disorder ruined her life

Sharron McSherry from Co Armagh who suffers from narcolepsy
Sharron McSherry from Co Armagh who suffers from narcolepsy
Brett Campbell

By Brett Campbell

A Co Armagh mum whose life has been devastated by a chronic sleep disorder is bringing everyone in Northern Ireland living with the same condition together on the first ever World Narcolepsy Day.

Sharron McSherry (49) experienced uncontrollable urges to sleep during work, while driving, and on nights out for 15 years before becoming one of the first people here to be diagnosed with narcolepsy.

She said: "It's literally a case of if you don't take the nap, the nap will take you. My life spiralled out of control."

The mum-of-two also suffers from cataplexy which means strong emotions can trigger muscle paralyses and sudden collapse.

The life-shattering symptoms began when she was a child and often resulted in terrifying hallucinations where she would be confronted by her worst fears.

"Whatever I was most scared of is what I would see, things like rats running all over you.

"I spoke to people I could see in my room and even felt the mattress go down when they sat on my bed," she added.

The visions resulted in her distraught mother turning to a priest to bless the house and exorcise the teenager's bedroom of evil spirits.

But the illness continued to inflict its misery.

"I left school with no qualifications because I fell asleep during every O-level," she recalled.

"My head would just droop and I couldn't get up.

"On nights out I'd end up napping in toilet cubicles."

Excessive daytime sleepiness was dismissed by medics as laziness or wrongly attributed to effects of puberty or depression.

Despite the crippling challenges, Sharron pursued a career as a travel agent and worked her way up to a management position with a major UK company.

"As I climbed the ladder and was under more stress I became more frustrated - it's such a vicious cycle," she said.

"I used to have to leave my desk to nap on the travel brochures out the back. It didn't matter where I was, I just needed to sleep."

"It all got worse, and as time went on so did the cataplexy.

"My knees started to go and often I wouldn't be able to speak in the middle of presentations."

Sharron's muscles started to seize up at pivotal moments.

"My arms would go when I needed to turn the steering wheel," she added.

"One time I ran to catch a green man and I went straight down in the middle of the road."

The young professional was passed from one baffled neurologist to the next before she had a late night epiphany while watching a documentary about narcolepsy and cataplexy in dogs.

"I knew straight away and remember saying 'that's me'," she said.

Following a private consultation with a neurologist, she was diagnosed a year before she married and moved to California in 2001 which allowed her to finally begin treatment.

But after having children, her condition worsened with devastating consequences.

She said: "We came home in 2003 and eventually my marriage broke down. It got to the point where I just didn't want to be in this world anymore, my two children stopped me from taking myself out of it."

A lifeline came eight years ago when Sharron joined the online support group Narcolepsy Ireland.

Two years ago she co-founded the Narcolepsy Ireland charity and started an NI support group for the 19 people who experience the same debilitating symptoms - including the youngest Narcolepsy Northern Ireland member who is aged just 10.

"It's been a great way to make friends and share experiences," she said.

Sharron now hopes that members will meet in person as part of a global initiative championed by award winning US author and narcolepsy awareness activist Julie Flygare.

A range of events are taking place worldwide with participants encouraged to share snaps on social media.

"I hope it helps people realise that they aren't abnormal, they aren't freaks," Sharron said.

"You don't feel normal until you've met someone else who says 'that happens to me'."

The proud organiser said connecting with people is crucial for younger sufferers who are prevented from living typical lifestyles largely as a result of strict medication routines.

"Those at school or university age don't want others to know that they get prescribed amphetamines because they have a high street value which puts them at risk," she said. "This will help take away the shame and give them a bit of dignity back."

The coffee afternoon will take place in Cohannon Inn, Dungannon between 2pm and 4pm tomorrow with a separate kite flying event taking place on Enniscrone Beach in Co Sligo.

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