Cataplexy… by Leon Lukassen

Cataplexy… by Leon Lukassen

I have posted two stories so far in the Dutch Narcolepsy Group. One about sleep paralysis and one about dreams / nightmares. And apparently people like it. So here’s my 3rd attempt.

A very important symptom of narcolepsy I have not exposed yet is cataplexy.
Cataplexy, according to the books “abrupt temporary loss of muscle control during strong emotions.”
From my point of view, that should change to “abrupt temporary loss of muscle control during unexpected emotions”
Because I can be very emotional without me getting cataplexy.
As long as the tension builds up slowly so that I can continue to control my emotions.
But for example, when I’m in the supermarket, and completely unexpectedly run into an old friend while I was just hesitating whether I should buy white or brown bread …
Then suddenly a lot of different feelings pile on in me and I feel my knees nodding or my speech will blur. Like I speak with double tongue and my face has idiotic tendencies.

My mother once said: “Don’t get so nervous!”
She obviously saw my face not fully participating while having a discussion of no meaning whatsoever.
So my experience with cataplexy is certainly not that I will fall if someone screams “BOO” behind my back.

I think I’ve suffered from this since the age of 18.
And so I taught myself to especially not to be too emotional.
But that has resulted in the view of my surroundings that I am “indifferent”.
Emotions are everywhere and if you do not show much difference because you suppress the things from within then you are seen as much different and so literally indifferent.

Fortunately, there are people who know me. I cherish them dearly!

Blog – by Annechien

Blog – by Annechien

Marriage

Confession: I have never written a blog before, this is all quite new to me. But my sleepy sister asked me, and hey, I don’t back down from a challenge.
Whilst on the subject of confessing: I am married! Great right? Wrong, I am a child bride, the day I was born was the day I got married. I got married to Mr. DSPS and I can’t ever divorce him. We’ve spoken our vows to each other almost 36 years ago, and “till death do us part” is serious business in this twisted relationship of ours. Mr. DSPS tells me what to do; he tells me when I can go to bed, when I can get out, when I can eat my dinner/ breakfast/ lunch, when I can go to a party. He also keeps me from being active with my children, from having a career, from studying and learning. Mr. DSPS is an abusive husband, and I can never break free of him. I’ve tried to delude him with pills, with alcohol, with exercise, with food restrictions, and you know what, he is a sly bastard. Within days he knows what is going on and (like the Empire) he strikes back. He controls me, makes me tell lies to the world, makes me feel like I am a second rate type of person, makes me feel like I can achieve nothing.

Now, I am somewhat of a successful person that lives with Mr DSPS; I am married married to a wonderful man, that supports me (and is also somewhat of a nightowl), I have a job; not the job I wanted, nor the job I have the brains for, but a job nonetheless. I am raising two children; sure it takes a village and the whole village (a.k.a. My mom and a nanny) are constantly in my house, but I am raising them. Raising them both into extraordinary persons, with a huge imagination, believing that faeries still exist and miracles do happen. I am somewhat alive during the day, though the world sees my version of an active person. But I am so tired. So deeply tired. It is encased in my bones. It is, despite what I want, what defines me. I am Annechien, 36 years old, and if I yawn, it is not because I think your story is boring. It is because I am the embodiment of tired. Normal sleepers nag to me about being tired and I want to smash their heads into a wall. They want me to understand what they are going through without willing to understand what I am going through. Let me tell you what: unless you have also stood in front of a window, debating whether to jump or not, you do not know what it is to be tired, normal sleeping person!

Now, this sounds all so very depressing but there is an upside to my abusive marriage: I have met so many wonderful people! People who are also married to Mr. DSPS, people that married his evil twin Mr. Non24, people with Narcolepsy; nightowls! And I love my nightowl community, I love that we howl at the moon every night, I love (comparing) our combat stories, we lick our wounds together. We salve our souls being around each other. We laugh till we cry or go into a cataplexy attack, one look and we know what ails us and what binds us. Amongst ourselves, we are free of our marriages. Amongst you, I am me!
So, Mr DSPS kicks me down a lot. I have you! I have you all, I am you all, you are all me! And while I may go down kicking and screaming, I know it has been one hell of a ride and, in a weird way, a great one. Cause I have had the privilege to know you!

asdaef