I didn’t know why I kept falling asleep. Then I got a devastating diagnosis
As I sat in the passenger seat beside my mum, I felt my eyelids grow heavy.
‘Wake up, sweetie,’
Mum said.
At 16, I was always falling asleep, even drifting off in class at school.
My constant napping became such a problem
that when I turned 17 and wanted to start driving lessons Mum feared it would make me a danger on the road.
She took me to the GP for tests, but the doctor just said, ‘You’re a teenager,
you need a better sleep schedule, that’s all.’
However, things had got to a point where I was falling asleep without warning up to seven times a day.
Eventually, I was referred to a specialist.
I had wires connected to my head, and doctors monitored me as I napped. And after being tested at home for a few days, I was diagnosed with severe narcolepsy.
It was a relief to have an answer, but it was also scary. And when I googled the condition, I panicked.
Narcolepsy meant I was no longer in control of when I was awake and when I was asleep.
‘How will I live if I just fall asleep all the time?’ I cried to Mum.
Added to that, I discovered that at night, I never entered the deep and restorative period of sleep, so I felt groggy all the time and the tiredness meant I had hallucinations.
I began taking medication, including stimulants to keep me awake during the day, but my doctors advised me not to do too much to tire myself out.
For almost a year, I barely exercised. I felt I was only surviving not really living.
Then one day, I decided to sign up for a 10km run. I’d always loved running and I really missed it.
I completed the run. Afterwards, I was exhausted, but I’d never felt so alive.
So, I carried on exercising and posted online about how it was helping me.
I got a great response.
With exercise, I found that I was able to manage some of my symptoms and enjoy more of my life.
Now, it’s my mission to raise awareness about narcolepsy, and I recently gave a talk to young children with the condition.
Seeing their faces light up as I described the symptoms they lived with – that their parents didn’t understand – made my day.
I’m a mum now, with another baby on the way.
I still love exercise and the benefits it brings me.
There’s so much misinformation out there about narcolepsy. It is a scary condition, but it’s manageable. And if you have it, you can live a happy and fulfilled life.
From Belle Breukelman, 29