My Narcolepsy Journey
I’m 26 years old and I grew up in a small town in Southern Ireland and have just moved home because of my condition. It was a hard decision to make but after a few months of being home and away from the stressful place I was staying and busy life of the City I have found it has made a huge improvement to my mental and physical health.
From my teenage years I started noticing that I was having lower than normal energy days. My first big attack happened when I was shopping with my mum in town when I was 16 years old and I got this strange, tired feeling and suddenly passed out. I was out for about 6 minutes in total. It was scary an extremely scary experience, but we went to my local Doctor who dismissed me . After that I started getting more sleep attacks and some cataplexy attacks. My biggest attack happened a year later when I was helping my father work in the yard, I was out for 30mins and when I awoke, I forgot the whole day and was very disorientated. We revisited the same Doctor again and this time he sent me to the Hospital for tests. The tests were inconclusive
And was no further tests so me and my family gave up.
After I finished school, I moved to the next County over where I worked in retail. I started to live off energy drinks, coffee and anything with sugar just for that quick burst of energy to get me through the day. I had a few attacks throughout this time but find it hard to recall them. After a year or so I moved to the Northern Ireland . After about a year of going in and out of different Doctors and Hospitals I was sent for a sleep study where I finally was my diagnosis for Narcolepsy and Cataplexy. Over time though the attacks got worse and worse and I was becoming a health and safety issue in my place of work and had to sadly leave. I am still unable to work at the moment but hopefully someday I will get back into it. Being up North helped a lot with my condition and I was actually getting somewhere, slowly mind but somewhere. In the end though I knew I really needed to move home and get away from my living situation and try get into a better mental state.
I didn’t know at the time what stress did to my body and how bad of a trigger it was for me until I moved home . My mood and energy levels can change dramatically from stress, I have become very bad at judging situations, people’s tones and what is right from wrong in what people should realistically expect from me. I always find that my brain tries to trick me into thinking someone is angry at me or blaming me for something. I go into panic mode which causes me to pass out and effects my mood for the whole day. I am still working on this and learning to not listen to people and try to stop blaming myself.
Another major trigger is social situations and when there are too many people/conversations happening at once. I go into panic mode and try hard to keep up and try to match their energy levels which I find extremely difficult.
Over the last few months I have been trying a low carb, low caffeine and no sugar diet. At first it was really difficult to stick with and without knowing how much this food was affecting my energy and health. I didn’t really believe that it was actually helping me so I barely kept too it and with such low energy levels and low cooking skills made it nearly impossible to cook so I only ate cheap take aways and premade meals. I had to completely change everything I was eating. I had to get a lot of help with food research because I didn’t realise how much sugar and carbs where in everything but it was only after sticking with the diet for a week or so then breaking it completely that I realised how critical for my condition it actually was that I stay with it. I have found though that straying from the diet even a small bit there are consequences to my energy levels. Moving home has made keeping to this diet harder and blander but the rewards are worth it.
About 3 weeks since moving home, after the waves of panic and regret had finally calmed down, I started to feel so much less pressure and found that the daily house routine helped me so much. Until free from it all I hadn’t realised how much energy that situation had put on me. I went from needing 4-5 naps a day and days of rest for one small outing to only 3 naps a day and able to go out at least twice a week and potter around the farm every day.
It’s still hard and takes a lot of pushing, some days more than others but in all I loved that I finally made the plunge to move away from Northern Ireland and back home and that I keep seeing immense improvements in myself both mentally and physically. These life changing conditions will not stop me from living a happy life and someday I will get back into the work force doing something I love.