Marcianna

The Great Part About Narcolepsy.

39 posts in this topic

I can avoid frying in the middle of the day with a nap. I scare doctors half to death by just sitting in a waiting room and get to see their true nature: afraid little people trying to rake in as much cash as they can because they were told they were supposed to.

Share this post


Link to post
Share on other sites

The best thing of having N is that I can't complain of ever not getting enough beauty sleep.

I will go first.</i>

The great thing about having narcolepsy for me is that since I am a night owl, I never got my bra frozen at sleep overs in the junior high for being the first one to fall asleep. (thank God no one did that during the day!)

Share this post


Link to post
Share on other sites

I can have some of my best creative ideas when hovering in that in-between-sleep-wake state when you're not sure if you're awake or dreaming. Sometimes I can even remember to write them down... :blink:

Share this post


Link to post
Share on other sites

Is all the wonderful friends I've made.

The Dreamer.

Share this post


Link to post
Share on other sites

I can fall asleep in places others couldn't. On a long flight to Hawaii from Atlanta, waiting for anything, on a crowded beach, on the train at rush hour (this was awesome! It was like getting an extra hour of sleep every night!), on a bus with 30 loud teenagers (this took me a very long way as a youth minister!).

Seeing the looks on my sisters' faces when they realized that all these years (32) I wasn't actually lazy!

I had another, but I forgot before I could type it. :)

Share this post


Link to post
Share on other sites

I can tell people that we're prescribed the Overachieving-Students drugs, Viagra for the Brain and the Date Rape drug. ^_^

No offense meant to anyone by my post. I just figured if you can't join 'em, shock 'em!

Share this post


Link to post
Share on other sites

All right. I really had to think about this, to try to find even one good thing about this terrible neurological impairment. I think I've found one, too, but it's not one that I would have immediately stumbled on. I couldn't find any of those.

Here's what I dredged up. The thing about this illness is that it puts me directly in touch with a level of experience that most people cannot fathom. There's an extra dimension to my brain, one that only exists in part and in minute, hard-to-reach moments, for most people. I live there, whether I will or no. My dreams are not companions; they're part of the way I live, breathe, eat and drink. Even when that dreamstate is held in chack by medications, my experiences still have that hyperconnectedness. It's a sort of synaesthesia: when I drink something cold and fizzy, I feel it in an intense, deep way, connected to all the other strangely fizzy memories and ideas. It's easy to come up with creative things. I enjoy music because it's rich and textured. There's an exoticness to everyday life that I've had to give up and learn to enjoy, because there's no other way to deal with it. I can't get back to the sunlit world entirely. I can be there, most of the way, most of the time, but at the back of my head there's one foot still planted firmly over the river.

And that's enough. I can be here most of the way and have a mostly normal life. I can enjoy it more because the depths are there, adding their wild flavour to everything I taste. I taste more thoroughly because my senses are so overtuned in.

I paint. I had to take up painting to try to give place to these things. And while I'm not good yet at shade or linework, I'm great with colour, because I understand colour. The texture of paint is almost intoxicating, because it taps right in to that underworld that I carry. Dreams are the messengers of sensation, I think. That we are never far from them means that we're seething cauldrons of creativity. Tapping into that, harnessing it somehow, can be a wonderful thing. My fabulously broken brain has never been without ideas.

Most people don't get that gift. They talk about having to hunt for ideas, but we live with them swimming in our bones. We live with them wrapped around our brains like holiday scarves. We work not to drown in them while everyone else is parched.

It's hard, not drowning. It's an everyday task. But if I can live here, and also get by in the big bright out there- that's a double kingdom, where most people only get one. I see us as the residents of that inner world, the one most people can only touch. We are careful with it, we live in the outside because that's where we live. But we know things most people don't about dreams, about sleep paralysis, about the terrible demons that breathe by your ear in the night. That's a powerful strength, to have survived that and conquered it, learnt what it is so we don't panic. This is an illness that leaves us feeling isolated, but we don't have to stay that way. We share a powerful knowledge and a deep overlap of experience, and a great strength that comes from having to exercise greater than usual control over body systems that should be automatic. We measure our waking world visits in milligrams, and we all know about what that's like.

This illness has made me crazy, but it's also made me brave. It's made me take ownership of my life, something I hear echoed over and over again. Fine, we say. If I am the only one who knows what this is, then yes, I'll take the reins and do the finding out. I'll figure out how to have my life.

That we all have that in common is amazing. And powerful. And we can use that to have more voice in the world, because we aren't alone any longer.

It has taught me, this terrible illness, that I have a responsibility to make sure that some things get heard. It's my job to make sure that *I* get heard, in the places where this becomes relevant. It's taught me that I might as well be myself, because if I'm going to have to work so hard for my own presence here in the world, I'd better make my life a place worth showing up for. No more pretending: be myself, choose what I really want, work for what I really believe in.

It's also taught me that sometimes the most compassionate people in the world are the total strangers on a message board, which is kind of good for my faith in humanity.

Thanks, for that.

Share this post


Link to post
Share on other sites

My Narcolepsy is Mild to moderate. I can go to sleep in five minutes with little effort at just about any time. Some days i'm a little sluggish and some days i'm really sleepy pretty much all day which sucks. But I guess the bright side that comes to mind for me is because people that don't have narcolepsy are usually ignorant about the range of extremes I can pretend to have a sudden sleep attack and conk out at moments that might be...favorable to me :)

 

So if ever I am suddenly questioned at work again and they say my employment status hinges on the next words that come out of my mouth I can "have a Twix moment" But instead of stopping time to eat a candy bar (which would likely give me heart burn anyway) I can just suddenly start snoring under the excuse that stressful questioning gives me sudden flare ups and take some time to come up with an ingenious game plan. (or wait to see if they try to do something to me while i'm supposedly unconscious :o and sue them later!) of course this all hinges on the question of whether its a good enough day and the act of sitting quietly with my eyes closed does not in fact trigger my narcolepsy for real causing me to just take a nap. but either way I guess id be winning.

Share this post


Link to post
Share on other sites

I truly believe narcolepsy is a double edged sword.. other then the obvious negatives, one of the main pros is creativity if you are not too groggy. Another is I could never be a greedy or corrupt if I were to be in a position of power bc very few things can bring me happiness & $ is not one of them...Id rather sleep (seems much more attractive then money) Also, this is what mostly effects me. narcolepsy has made me a highly emotional man(not crying for every thing type) I can understand others emotions, I have this "ability" to where at will I can get this sense of euphoria. I literally can feel a hormone rush from my head down other parts of my body. when I do, the areas I felt the "rush" on, my hairs stand right up (goosebumps). it is what actually drives me to get off my a** & being somebody in life. idk if this is related to my narcolepsy for sure or just me being weird but it is amazing & if a cure for N ever came out, I'll probably not get it bc of all the benefits of N.. sorry for making the rant just wanted to share

Share this post


Link to post
Share on other sites

oh I'd like to add that I'd probably never cheat on a girl(too early to say for certain bcim 17 & haven't really had a girlfriend ) bc in reality the relationship & the intimacy is far more valuable to me than cheating. it wouldn't matter how fine another girl was I wouldn't ever cheat bc my values are more on emotional things in life

Share this post


Link to post
Share on other sites

nike0518, I'm pretty much fully with you there, on numerous things.  Being honest and upfront not only keeps me grounded, along with stable, it makes me feel strong.  I also, can feel the waves of hormones rush into my head, or through my body, when emotions are running strong, be it my own or another close to me, or even some stranger getting some positivity.  Now, one thing I must state though, is that Cataplexy is tied into this, and for me it has been the most impacting aspect of having Narcolepsy; it is the double edge sword in my book.  It has been quite sharp for me, in that I've had so much difficulty in finding/acquainting/meeting a partner, at 33 I've only had a couple of brief partners in my life.  I've had many close friends, but moving beyond, for instance making a move to kiss or laying out feelings and receiving compliments or feelings back, triggers my Cataplexy.  The Cataplexy can be like a 'loss of mental tone' as well as a 'loss of physical muscle tone' and this is quite painful.  I hope what I'm saying there isn't scary to you, I have other health matters and I've always been quite a loner.  What I do is try to keep thing balanced, and perhaps thankfully, I am extremely patient yet at times I do get frustrated.  Stay positive, stay strong, don't let people walk all over you, try to be aware yet not so much that it scares others (I think such may be one of my downfalls)...

That turned into a bit of venting, my bad.  Just trying to respond though as I found what you said quite relate-able, the best of luck to you.

Share this post


Link to post
Share on other sites

Having trouble finding a great part.  It has been nice to read these though.  

 

Maybe that my four dogs like to sleep so we cuddle on the couch a lot.  I love them.  If I didn't have them, I don't think I would have made it this far.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now