Queen of Sleep

Living with narcolepsy: a personal journey

Coming to terms with narcolepsy

with 4 comments

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.

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4 Responses

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  1. hey there. i am the wife of a narcaleptic, living with insomnia. i want to thank you for posing this. it’s hard to find a supportive sleep disorder group online that isn’t swarming with hateful spouses and/or friends who are ignorant on the facts, and make the assumption that people who suffer from this disorder are actually lazy and/or just don’t take care of themselves by getting enough sleep at night.
    while insomnia admittedly has its own disadvantages and stigma, it’s hard to explain to people that PARLOR TRICKS are not what we do.we are not a punchline. it is embarrasing and disappointing to my husband when he falls asleep at family gatherings, or dinner with friends. i feel like a nag 93% of the time when i just want to be a loving wife. it is frightening when we both suffer from lack of energy from sleep deprivation and have to care for our 7 month old daughter in shifts. i am afraid of him falling asleep at the wheel when he takes her out when she can’t sleep. he is afraid of me not taking care of myself because i want to spend every waking moment with him while he is alert and coherent. even when he is just holding her in the kitchen i worry about him leaning against the sink and dropping her. this does not make me love him less, and it does not make him any less than an extraordinary father, he’s the best. it only makes me want to control my own disorder better so i can remain alert enough to recognize the signs of an attack. this creates its own downward spiral by putting me into “hyper-allert mode” and only prolonging my desire and ability to completely relax.

    ok, so. there are other who get it. sorry it got so wordy and once again, thanks.
    hope this finds you strong and well rested.

    tara

    June 14, 2010 at 9:39 am

    • Thanks for your reply and thank you for sharing. Do come by and comment whenever you feel like it! Get ever wordier! I read an MA research paper from Australia a couple of years ago, it concluded that the most important support above anything else (above medication etc) was the partner/family member. It was thanks to my partner who made me go to see my GP 3 years ago that I started to acknowledge and deal with my narcolepsy. I was at the time falling asleep whilst walking claiming that it wasn’t a big deal. I was in HUGE denial about my problem. I know that there are people out there who understand and care a great deal, and without them my life would be so much more frustrating and difficult.
      I owe a great deal to my family and friends for their support – ah, I love them so much!
      You seem to have a very loving, supportive and strong relationship, and a newly born daughter. I think we are both blessed. Thank you ❤

      Queen of Sleep

      June 19, 2010 at 2:44 am

  2. Hey there….

    i stumbled upon this blog entry while doing a search for a narcolepsy wallet card….as it turns out, i have been very very (within the last week) recently diagnosed with narcolepsy with cataplexy….of course this is actually a welcome diagnosis after having been misdiagnosed with panic-anxiety disorder and a host of other misdiagnoses.

    i read this entry and i cried.

    there has not been a single human being in my life that has been supportive of this diagnosis. i have met with skepticism and plenty of folks who want to tell me “what i should do to fix my sleeping problem.”

    then there are those who believe the cataplexy attacks are a way of being “dramatic”, read:trying to get attention.

    the worst….is the laughter. i’m so glad that when i told people that i thought loved and cared about me, that i finally had a diagnosis, they straight laughed at me. it’s a big fucking joke.

    they can’t possibly understand what it’s like to fear leaving the house by yourself because you don’t know if you’re going to completely collapse somewhere from a cataplectic attack….to never feel capable of completing a full day’s activities because you’re so fucking exhausted all the time….and then to have the frustration of never sleeping through the night.

    i haven’t started all of my meds yet, and i’m hoping…..hoping….that i get some relief and am able to lead a somewhat “normal” life, but it’s hard not having a support network now.

    while i am sorry that anyone has to learn to live with this disorder, i am at least glad to hear others’ stories and know that i’m not alone…that this IS a very real, and at times, very frightening thing we’re dealing with.

    thank you for sharing your story. thank you for your bravery.

    i think i will rest a little easier tonight. 😉

    Erica

    May 22, 2011 at 1:11 am

    • I hope you got a relatively good night’s rest. Thank you for your letter/comment. It reminds and inspires me to keep writing and to share my experiences. I hope that by now you have found some regional contacts..perhaps through Narcolepsy Network. I found it very useful especially in the beginning, right after being diagnosed, to meet up with and talk to other people with narcolepsy. Knowing that you are not crazy or alone is very reassuring. Sending you wonderful -high quality sleep and love, QoS

      Queen of Sleep

      June 7, 2011 at 9:27 am


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