Meet Taylah – Manse Medical’s Narcolepsy Educator. Taylah first started showing Narcolepsy symptoms 15 years ago which not only impacted her physical health but also her schooling and mental health. Today she has her dream career, is a caring wife and loving mother of an energetic and considerate 7-year old son. We applaud Taylah for her courageous journey and for sharing it with us. Please read her story below:
I was never an exceptional student in school, but I certainly wasn’t someone at risk of failing.
I suspected something wasn’t quite right when I couldn’t stay awake during class.
I was able to convince myself that I should choose different subjects next year, because I was clearly bored and not interested in what I was being taught.
What I lacked in academically, I made up for in my sporting ability.
I was used to spending half of my week on a netball court, the other half on a basketball court.
I knew something was wrong when I started missing netball training and basketball games because I would fall asleep after school and not wake up until the next morning.
My teachers, my coaches, my parents & eventually my GP were quick to dismiss my sleepiness.
I was just a typical teenager, they said.
I must have been spending all night on my phone when I should’ve been asleep., they said.
I was just lazy. Maybe even depressed, they said.
The next few years are much of a blur.
I remember the time I had off school, having to travel to bigger hospitals with better doctors.
I recall years of being poked and prodded, having scans and tests ran that always came back with a normal result. I always wondered how I’d have any blood left after seeing what had been taken.
I remember the nights I spent wondering if I was crazy, and if it was all in my head.
I wondered if everyone else fought every day; just to stay awake like I did?
And why did they seem to be able to cope & I couldn’t?
I remember the first time someone took me seriously.
I remember the first time someone told me they understood, and that there was an explanation; a reason, for why I couldn’t stay awake.
And it had nothing to do with what I ate, or how many hours I spent in bed. It had nothing to do with stress or lack thereof.
It was neurological.
I remember crying.
I remember being happy, which I couldn’t understand at the time.
I didn’t want to be sick. I didn’t want to have a chronic illness that was incurable.
I didn’t want to have to be medicated for the rest of my life, just to be able to function.
But I did want to be heard, I wanted people to listen when I said something was wrong with me.
I just wanted answers. I wanted to know why I was, the way I was.
It’s been 15 years since I first showed symptoms.
I’ve spent more years with narcolepsy than I did without it.
It’s been 10 years since I was diagnosed.
It’s hard to remember a life before narcolepsy.
It’s hard to remember who I was as a person, without narcolepsy.
As much as I wish it weren’t the case, I am narcolepsy.
It has defined who I am as a person.
It’s made me the wife I am & the mother I’ve become.
I have an amazing husband who picks up the slack at home while I spend the weekend in bed.
I have an energetic, chaotic & incredibly considerate 6-year-old son who knows the Mummy must take medication for her ‘Sleepy Sick’ and understands when Mummy has her ‘Sleepy Days’.
I also have a career that I couldn’t have even dreamed of 15 years ago.
I knew I would never go to University; I barely scraped through my VCE on attendance alone.
Manse Medical has given me the opportunity to offer the support & understanding I wish I had 10 years ago.
