For as long as I can remember I have been tired, unable to stay awake and yawning every two seconds. If I'm honest I don't remember what's its like to have energy, and even if I did get the energy levels back to that of someone without narcolepsy I think it would feel so overwhelming and possibly like I've taken speed.
Trying to get a medical professional to look outside the box of standard conditions that cause excessive sleepiness, and consider that you might have a rare neurological condition is next to somewhat IMPOSSIBLE! From the age of 14 I spent every 3-6 months going to the GP and explaining my narcolepsy symptoms, only for it to be dismissed. You can imagine my frustration when I started to hear the same responses over and over again.
I'm quite a stubborn person, like most Taurus's if you believe in horoscopes, so over time I started to do everything I could to prove it wasn't any of the following conditions they were trying to pass my sleepiness off as. I had regulated my sleep, drank 2-3L of water a day, ate healthy foods and exercised before bed. I didn't find any improvements to my symptoms.
I created a mind map to sum up the responses I have received over the year:
At its worst I would fall asleep up to 20 times a day, fall asleep eating, fall asleep standing up, talking, driving and even fall asleep showering. I just could not for the life of me stay awake. By 19 I had began to get severely depressed and dissociated with life, I didn't feel like I was functioning and after getting shot down repeatedly I started to think it was all in my head.
In 2020 I had a major car crash, I had fallen asleep at the wheel doing around 40mph, I drove into a parked trailer and woke up not remembering how I had got there or when exactly I had fallen asleep. At the time I was already being seen by my doctor for Vitamin deficiency, and after double dosing on Vitamin D for 3 months I hadn't seen any improvement. The day after my crash, I called the doctors up and asked for my most recent blood results, she told me everything was normal and no further investigation was needed.
I'd like you to just picture me, standing by my written off car and being told everything's normal, there's nothing wrong for the 100th time in 6 years. It looked a little something like this...
HULK SMASH would have been an understatement! I cried and screamed down the phone "how can I be normal, I've just crashed my car and don't remember how, that's not normal! I'm not normal what do I have to do to get someone to take me seriously?!"
Looking back at it now I was a little rude and the lovely NHS staff didn't deserve me screaming at them. However it did get them to listen to me, for the first time in 6 years I was considered for a hospital referral for possible narcolepsy.
It's been a long process, the average time for a narcolepsy diagnosis is between 4-10 years so I consider myself one of the lucky ones in terms of time. When I was at school I couldn't stay awake in class and I was always bullied for it, told by teachers I need to go to sleep earlier or just in general very misunderstood. Suffering with in invisible disability with or without a diagnosis can be lonely and extremely frustrating, I joined a Facebook group as soon as the doctors referred me to the hospital. Narcolepsy UK has given me so much support over the years and they continue to do so for those living with narcolepsy, diagnosed or not and for those caring for other with narcolepsy.
It's safe to say when my diagnosis came through in December 2021, it was as if a huge weight was lifted off my shoulder. People around me became more understanding, I was able to apply for additional help with exams and I have been trialing medication to hopefully start driving again.