But I can assure you that whatever is wrong with me it’s not contagious. You can’t catch it off me, even if I breathe on you.
Narcolepsy is not an illness. It’s not a disease, I won’t die from it, unless I fall asleep while crossing the road; no it’s a condition that I have to live with for the rest of my life.
So life went on. I used to read to the girls at bedtime. Problem was that I would fall asleep midsentence. Michelle my eldest daughter would wake me up shouting, ‘What happened next mum?’When the children were in double figures I started work again. But because of my falling asleep on the job, I kept having to look for new jobs. My CV’s had to have a few porkies in them.
But eventually I had to leave my nurse training as my constant sleeping meant there was a possibility of me harming a patient; without meaning to of course.
Me And Further EducationAs I had left school at fifteen I had no educational qualifications. So being a sponge for knowledge, at aged thirty-one I went back to school. I would see my daughters off to school each morning, then I’d go to school ‘Mums’ School.
It Was Twenty Years Later That I Found Out What Ailed MeIn 1981 I read a letter in our local newspaper. Dorothy Hand wanted to start a support group for Narcoleptics. She described the symptoms. Now at long last I knew why I was always falling asleep, I wasn’t alone with the problem of always nodding off, and what I had, had a name. Narcolepsy.
Most of the people there had already been diagnosed as having Narcolepsy. I went away from that meeting knowing at long last there was definitely a reason why I kept falling asleep. I was encouraged by the group to go and see my doctor as soon as possible.
So a couple of days later, I went to see my doctor. Just by a stroke of luck, my doctor was on holiday, so I saw a locum. This time I didn’t tell him my symptoms and hope he’d work out what was wrong with me, but I asked him, ‘What do you know about Narcolepsy?’‘Sit down,’ he said. ‘Tell me all about it.’
When the Neurologist confirmed that I did have Narcolepsy, he also told me I had it mildly. So he gave me some medication that turned out to be Amphetamines. I remember taking one tablet and soon after, I started feeling sick, so I flushed the rest down the toilet. I have never taken any medication for it since then.
Thankfully, frustrating as it is to be sleeping my life away, I am no better or worse than I was when I started with Narcolepsy forty-five years ago.
Apart From Falling Asleep Frequently, What Else Happens?Others that have Narcolepsy, besides having the sleeping bouts, called EDS (Excessive Daytime Sleepiness throughout the day, also have Cataplexy. This is brought on by an emotion, could be laughing, crying, joy or sorrow. Their muscles give way, and they will fall to the floor in a helpless heap. Unfortunately, while in this helpless state on the floor, they are fully aware of what is going on, but for the few minutes it lasts for, they are unable to move or speak.
And the way I can fall asleep any time of the day, you would think I’d have no trouble falling asleep when I do officially get into bed. But that is not the case. Sometimes it can take me up to an hour to drop off to sleep. Then I sleep about two hours and wake up again. This sleep pattern can go on right through the night.
Can Narcolepsy Be Cured'No Narcolepsy can’t be cured. Once a Narcoleptic always a Narcoleptic. Medication can help the Narcoleptic to live a better quality of life, but I couldn’t say a normal life. Some days are better than others.
So with Narcolepsy being a way of life. I just have to get on with living as best I can.