My Narcolepsy Journey

In Early 2010, I got the swine flu injection. Three weeks later I noticed I was sleeping a lot more than I should and when I wasn’t sleeping I was still feeling tired. Then I started to have these very vivid dreams at night. My experience was – a man coming into my bedroom, dressed all in black and he would put his hand over my mouth. I could feel his hand over my mouth, I would then wake up but I wouldn’t be able to move for what seemed like ages, I could see and hear everything, but my mouth and body just wouldn’t move. After having this dream a few times, I didn’t want to sleep at night, which lead to sleeping most of the day and being very irritable when I was awake.

I was finding it increasingly hard to keep up with everything such as housework and doing my Mammy duties. My partner and my friend didn’t take me seriously when I told them that there was something wrong with me, they didn’t believe me. This was the beginning, for me, of what I call a mental breakdown. I knew there was something wrong with me but nobody believed me.

After about two months my father encouraged me to go to my GP. I felt embarrassed going to the doctor to tell her that I couldn’t stop sleeping during the day and I refused to sleep during the night because of these weird dreams and when I would wake up I couldn’t move.

Another strange thing was happening to me! Throughout the day, when I showed emotion, like laughing, my body would go limp. Despite my embarrassment, I went along to the GP, just to be told I probably had the flu and to come back in two weeks. I knew it wasn’t the flu. Two weeks later I went back again, I was told the same thing and to come back at a later date for a check-up.

Eventually, I went back to my GP and told her I still had the same symptoms. This time, I heard the words Narcolepsy and Cataplexy for the very first time. These terms didn’t mean much to me at the time but when I went home, I looked it up on the internet and read as much as I could find which wasn’t very detailed but was enough for me to realise there was no cure for this condition and it was an illness I would have for life.

So I tried my best to get on with life whilst waiting for an appointment with a Neurologist, but my Narcolepsy was holding me back, I was 20 years old. I couldn’t drive that much, fearing that I might get sleepy and crash into someone. I could not go to college because it was impossible for me to stay awake in a school setting. I couldn’t work either as the only thing I was qualified to do was waitressing and now I couldn’t even hold a cup of tea without it falling, let alone serve hot food to the public. I was also finding it very difficult to look after my son. I felt like I had no purpose in life. Most people would become very depressed, but I didn’t, instead I became very angry.

Finally I received an appointment with a Neurologist – good news! I felt that this appointment would fix everything and I would be given what I needed and get back to my normal life. I was wrong! I described my symptoms to the consultant and he agreed with my GP that I had Narcolepsy and Cataplexy. He started me on a course of anti-depressants for 3 months assuring me that this medication would help me with my sleep and he arranged for me to undergo a sleep test. I tried the tablets but they made no difference. A can of red bull, a cup of coffee or a nap worked better than the prescribed medication, so I stopped taking them. When I returned to my Neurologist he wasn’t happy that I had discontinued the tablets but I knew they just weren’t for me. Until I had my sleep test, the neurologist couldn’t prescribe any other medications.

Months went while I waited for an appointment for the sleep test. Eventually I rang the hospital and I was told that I had cancelled my sleep test appointment in Dublin which wasn’t true, I hadn’t even received a letter to say I had an appointment. “there must have been a mix up in your address” was the response from the secretary and she refused to listen to me.

In early 2011, one year later, I discovered I was pregnant. For the nine months previous I hadn’t seen anybody about my Narcolepsy and Cataplexy. My pregnancy was awful, I slept through most of it and when I wasn’t asleep I was very angry at everybody. September 2011, my baby boy was born. Two months later I tried to get another appointment with the neurologist but he refused to see me, the only neurologist in my area!

By late 2011, I was on no medication, had no sleep test appointment arranged for me, no neurologist, no life and no one that understood what I was going through. I had two children that I felt I could not look after. I could have had a million people around me then and still I felt so alone. I was already angry, but by now I was 100 times worse. My anger lead to the breakdown of some friendships I had at the time and the relationship I had with my partner. I pushed the only person that was helping me away (although I did not see it at the time). I became a person that nobody wanted to be with. It took me a while to see this and to listen to the advice of a friend, even though I didn’t want to hear it at the time.

Moving along to 2013 and I’ve decided that if I can’t get help with my illness, I would have to stop feeling sorry for myself and do something about it. My father was now around a lot more and helped me to look after my children. I wanted to stop feeling angry, and I needed to accept that I would have this illness for life and no amount of anger or turning people against me was going to change that.

I changed my diet as it really only consisted of red bull and sugary foods and instead of taken naps when I felt tired, I chose a time during the day for a 30 minute nap, whether I was tired or not. I went to bed 11pm every night and went to sleep no matter what dreams I had.

My cataplexy is mild. It only bothered me if I was out with friends and strangers would comment that I was drunk or stoned because when I laughed, I would get a bit wobbly, so instead of getting angry I just brushed it off and let them think what they wanted to think. Having a good sleep routine meant my angry outbursts were a thing of the past. It took a while for me to get used to this new routine but it worked. I was only napping once a day now, instead of 4-5 times a day.

By 2014 I still had no job and no qualifications and no neurologist but things could have been worse. By 2015 I could look after my children without needing help and I was even a carer for my ill mother. I decided that it was time to try again with a new neurologist and my GP referred me to one in Dublin. It meant I had to travel 3 hours to see him but I didn’t mind. I finally had my sleep test in April 2016 which confirmed that I had symptoms of Narcolepsy but because of my daily routine, I did not need any medication which I was happy about. I’m now allowed back driving after my licence was taken from me in 2013.

I recently applied for a part-time course in college starting in September 2016. I feel like after seven years I finally have got my life back. I still have Narcolepsy and Cataplexy but I control it, it doesn’t control me anymore.

Samantha, Waterford, 2016