Coming to terms with narcolepsy
I find it frustrating to always have to be so fucking responsible for my narcolepsy. Not only does it take time and is problematic to come to terms and fully understand one’s narcolepsy and health
Sometimes I just push myself beyond my limits just because I want to stay out late or/and have a good time. Of course I suffer the consequences of being totally over the top (more than normally) exhausted for a week or falling asleep whilst walking on my way home, i.e. I pay the price. It is my life and I have narcolepsy NOT other people. The people who care for me also understand this – I am lucky that they don’t nanny me. It would make me so furious if they did.
It has been three years since my delayed diagnosis and I understand my limits better. Even though I understand them – It doesn’t mean I can control them. I am still on medication that does not control my condition. I have tried many by now and as I have mentioned before I hope to get my sodium oxybate application approved this year.
Recently, I have started to become more and more angry with other people’s reaction to my narcolepsy. This is not a new thing, I have come across very many adult’s responses that are loaded with fear expressed through anger or apathy. I see it as their fear to deal with something they do not understand. Hell, scientists are still years behind discovering an effective medication because they have not had the resources to research to core cause of narcolepsy. From my point of view it is highly disturbed night-time sleep. Sort that out and many narcoleptics will cope much better.
Why on earth should I have to cope with other’s reactions to my narcolepsy? It is hard enough coping with my own coping mechanisms. If I am honest most people who I meet are interested and ask questions so I try my best to explain how it affects me but also always say that it is a highly individual condition. If you explain the science behind narcolepsy most people shut off and can’t identify with it. I have learnt to explain by using comparisons with normal sleep/wake cycle and my sleep/wake cycle, for example “you will feel like me if you did not sleep for a whole week”. “This is how I feel every day”.
There seems to be three main categories of responses apart from the genuinely interested ones:
When “aggressive” people shouts at me, for example when I get cataplexy, and say/shout that I should wear a narcolepsy badge (I have a card in my wallet), I get so frustrated and angry it triggers another cataplexy attack straight away. I call these people emotionally retarded because they act out of fear rather than compassion.
Then we have the “I can cure you” people. They are just completely clueless and think that my condition is psychosomatic. I have had a psychologist and a Reiki person tell me this. I appreciate alternative medicine but it can only help up to a point. How can they help me grow more orexin?
Then we have the ” I also fall asleep now and again” or “I also sleep really badly at night” people. They are the most annoying group because they try to emphatise with you but have no clue that they diminish the symptoms and difficulty of dealing with narcolepsy.
My professor/specialist in neurology told me in 2007, ” yes, you have narcolepsy and now you have to educate everyone else about it”. I did not quite realise at the time how little people in general (including GP’s) know about a neurological condition that is more common that Parkinson’s. Now, I just have to get over it and deal with it. Still, it is sooo annoying and frustrating.