The Kerryman (South Kerry Edition)
BATTLING .... JUST TO DO THE BASICS
AISLING (18) WANTS MORE KNOWLEDGE OF DEBILITATING SLEEP CONDITION
IT’S a measure of 18-year-old Aisling McLoughlin’s cheeriness that she considers herself ‘lucky’, in spite of her struggle with Type Two Narcolepsy over the past decade. Seated next to her mom, Mary, at the kitchen table of their Caherane Close home, the young woman is far more interested in raising awareness of her illness than understandable grumbling.
The condition has ravaged something as key as her sleeping and having battered her energy levels, it’s taken plenty more of what you or I would take for granted; a first-year veterinary assistance student at KCFE, if she feels tired in class, she has to get up and go for a walk just to avoid falling asleep on her books.
“I won’t ever be able to drive in case I fall asleep at the wheel,” she says. “I’ll always have to have somebody with me. I won’t be able to cook in case I’d fall asleep. A couple of weeks ago I had to come home from town. I can’t go to the cinema. If I travel on a bus, I have to have someone with me in case I fall asleep. With the job situation, we don’t know yet...but I’m lucky enough, because at least I don’t have Type-One [a combination of narcolepsy and the debilitating cataplexy].”
In a letter written in 2014, the Mater Private Hospital in Dublin wrote: “Aisling is a 14-year-old girl with a history of excessive daytime sleepiness for the last four years that developed after H1N1 [Swine Flu] Pandemerix vaccination, with sleep study and MSLT results that confirm her diagnosis of Narcolepsy without Cataplexy.”
For Aisling and her family, it was a relief to finally have a diagnosis after years of uncertainty.
Aisling received the injection in 2009, and says her symptoms appeared some six months later when she began falling asleep straight after coming from school – and sometimes even in class. After much difficulty finding a diagnosis in the ensuing years, guidance from support group SOUND (Sufferers of Unique Narcolepsy Disorder) finally pointed Aisling in the right direction – but while this was something of a relief, it didn’t change the reality that she must live with an incurable condition.
“It’s all light sleep,” her Mom, Mary, says. “It usually takes a normal person around 10 minutes to hit the REM [Rapid Eye Movement], but she does it in a couple of seconds. She goes into deep sleep first for around an hour, then it’s all light sleep...it’s backwards, it’s not proper sleep.
“It’s not actually classed officially as a disability yet, but there are so many everyday things she can’t do. We have a little granddaughter here, and Aisling can’t babysit her. She can’t cook. These are all just normal things people her age should be able to do – and she can’t.
“When she gets tired, she has to sleep. That’s fine at this age because we’re around and she’s here, but if she’s in a job, who’s going to let her sleep?...Say when she finishes her course, we want her to be able to do something. By right, she shouldn’t be able to go on the ordinary dole, because she’s not available for work, she can’t.”
Aside from this uncertainty about her future, Aisling says she has not been able to avail of any outside assistance since her narcolepsy developed, and she also says she finds it very difficult to explain her rare illness to most people, many of whom have never even heard of Narcolepsy.
These, she feels, are all symptoms of a lack of understanding around Narcolepsy – something she dearly wants to change. It may be a rare condition, and it may not have the recognition she feels it deserves, but the effect it’s had on her life and the lives of her fellow sufferers has been real. She has already had to give up on her ambition to study childcare; it interfered with her Leaving Cert studies; she’ ll never be able to drive; and she’s still not sure if she will be able to work – and yet, for all these difficulties, she’s still keen to sound a positive note.
“Sometimes if people can’t see something, they don’t know what it is, whereas they would have heard of a lot of other disabilities. When it’s a ‘new’ thing, it’s different,” she says.
“More than anything, I want to be able to work, but we’re not sure what I’ll be able to do...There’s an awful lot you just can’t do, but you have to get on with what you can do.
“I just get through it, to be honest. There’s no point letting it get me down. But I would like more people to know about narcolepsy.”