I’m going to tell you a bit about what it feels like to live with Narcolepsy. I was diagnosed with Type 1 Narcolepsy in 1992 when I was 12 years old. I first developed my symptoms when I was 7. I have been on fairly hardcore prescription drugs for over 25 years. There is no cure. Every case is different but this is mine. 

The thing about needing to take hardcore drugs every single day of ones life in order to vaguely function is that although they make life much more bearable they don’t always work. It is a misconception that popping a pill magically makes ones symptoms disappear.

I am damn good at faking normal and I tend to try to hide my symptoms when possible because zombies made out of jelly aren’t much fun to be around. Most people only see me when I am well medicated and able to put on the facade of being fairly normal when in fact, in order to be there in the first place I have probably taken enough drugs to make a ‘normal’ person spontaneously combust. You might say that choosing to medicate my illness is a decision but if you had the opportunity to spend a week in my company with all my symptoms on display, by the end of it you would be plying me with every stimulant in the known universe and then some.

Allow me to explain.

Imagine that you have not slept for over 72 hours. Your evil brain is giving you the middle finger and allowing only the most basic functions. This makes you quite sad and grumpy. You decide to take a bath because baths are nice and relaxing but only a couple of moments in and suddenly you begin to feel very weak and before you manage to attempt to vacate the bath tub, your head and extremities go into paralysis and you turn into a human jelly. Your body is like a dead weight. It’s like you downed a whole litre of vodka but without the intoxication. This is called Cataplexy.

You eyelids are heavy, vision is blurred at best and the light hurts your eyes. Your head is heavy and although you try to keep it above the water, you can’t control your neck muscles and your head keeps bobbing up and down in to the water as you desperately try not to drown.

Now you are basically waterboarding yourself. Unable to form words with your mouth, you wouldn’t be able to scream for help even if you wanted to. Waterboarding yourself in the bath tub is not a fun time but to add to that, your brain decides to mess with you even more. Because your body is doing what it supposed to do only during stages of R.E.M sleep and your brain takes that as a cue to switch to dream mode. Only this is no normal dream.

You are essentially still fully conscious and what you are experiencing is as real as the earth is a sphere. You are absolutely sure that a very bad person has broken into the house, you hear them ascending the stairs and shuffling around outside the bathroom door. They definitely have a knife and they are definitely going to gut your naked ass like a pig.

These are auditory hallucinations but because it is dreamlike you also have some visual stuff going on as well. Giant spiders are crawling all over you and as your ears sink below the water, you can hear strange sounds. You are terrified and unable to move.

Eventually you are able to wiggle your fingers and toes so you manage to wrap your toe around the bath plug and pull it out.

You put every ounce of your being into trying to move your limbs and after a while you somehow manage to sit up but you immediately become weak again and you sway forward like a rag doll and your head splashes face down in the water. Unfortunately, you like your baths nice and deep and as you wait for the water to go down the plug hole, it occurs to you that you don’t know how long it takes to drown.

You never had the chance to take a breath and you begin to count the seconds. Bizarrely all you can think about is how horrifying it would be to be found naked, dead and bloated in the bath tub and you are determined that this will not be the case.

You survive … again.

What I just told you is a true story from my early twenties and is only one of hundreds of occasions when cataplexy became life threatening. The thing is I can’t spend my life bubble wrapped and I won’t always be safe when this happens. This is just the reality of it. It’s just the way it is.

Now remember that 72 hours sleep deprivation I told you about? Imagine that you feel like that every single day for your entire life. You are given a load of drugs to help combat all of the above but the drugs don’t always work.

Most of the time life is bearable and your symptoms are controlled fairly well although they are always very much still there. They don’t go away completely.

Severe tiredness is a daily thing and occasionally, particularly when you attempt ‘normal’ your brain cruelly reminds you that normal is not going to happen for you and you are struck down with sudden and extreme episodes of tiredness or cataplexy.

Even though you are always tired, you still don’t manage to sleep well at night.
You tend to wake up several times throughout the night and when you do go to sleep, within a few minutes you are having epic lucid dreams so you wake up exhausted anyway. Your brain is often foggy and you forget things constantly, struggle to be as organised as you would like and you have a reputation for being slightly late.

You often feel helpless and alone and with all of this comes depression. All you can do is pop some more pills and hope for the best. You try to remain strong and positive but find yourself facing obstacle after obstacle and people seem to think that you should be rich and successful, as if you hadn’t been slightly preoccupied merely attempting to get through each day.

I began writing this yesterday.

Just this morning I had 3 cataplectic attacks. During one of them I was attempting to boil some eggs and nearly ended up burning them. Luckily I came out of the attack in time to turn off the stove.

Today I feel very weak and I will almost definitely have more cataplexy throughout the day. I probably shouldn’t attempt to go out in case I collapse in the road and I am not exactly fantastic company in this state.

I can’t drive a car, kids are definitely off the cards for me, although some narcoleptics do both of those things. It depends on the severity.

I spent the first 15 years of my life with Narcolepsy being utterly ashamed of who I am and feeling like I shouldn’t be here.  I sometimes feel like a burden to others. I have to constantly tell myself that I am worthy of life. But yes, I make it look easy so that you won’t be confronted by all the dark stuff, so that I don’t have to explain what to do when I have cataplexy and so that I am not a problem for other people.

Anyway, that’s my case of Narcolepsy in a nutshell. Only a nutshell though.

So next time you meet a Narcoleptic, don’t ask them why attempting normal is a little bit tricky for them because now you know the answer.

 

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About Beatrice Flowers

I teach and perform Tribal style Belly dance, dabble with music, complain about humanity and blog badly, but I have a good excuse ... I am narcoleptic.

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