The Great Part About Narcolepsy.
Posted 27 February 2009 - 02:42 PM
So what is cool about having Narcolepsy?
Posted 27 February 2009 - 09:20 PM
That is if, a person is a recreational drug user - something I am not.
But at least I know I will never become an alcoholic say ..
Also my Hypnagogic Hallucinations tend to be almost always very interesting.
Never frightening. And even the frightening ones are interesting to watch.
Like watching a horror film but not being scared (but entertained instead)
Again the horror ones are very very very rare.
HH tend to be always PG rated.
The only downside is that my HH often happen when I am too sleepy for me to care about them!
Seldom they happen when I am wide awake and very alert.
But when that happens.
It's better than going to the movies.
Otherwise it's like going to the movies but feeling too sleepy to pay attention and watch the film
Posted 27 February 2009 - 10:18 PM
I get to impress people who take recreational drugs when my brain does naturally what they have to break the law to do. Heh.
Plus my N gave me purpose in life when I had none and opened up all sorts of new career opportunities to do serious and exciting things. I have to say, because of my N I have a pretty damned cool job!
AND because of my N, through a long series of random events, I met my current partner. If it weren't for my N, and indirectly because of doctors treating me like dirt, I never would have met him and I wouldn't have our awesome son. Boy, would I be lonely! (yes this is actually very indirectly related to the whole PTSD and 'go see a shrink' thing. if that hadn't happened, I wouldn't have the happy family I have today. amazing, huh?)
So...thanks N! I wouldn't go back and give it up for anything, even though it makes life hard. Everyone has something and it could be a lot worse! Since I've learned how to live with it, I have to give my N props for the good stuff too.
Posted 28 February 2009 - 11:26 AM
It is so awesome to know people who GET it.
Posted 10 June 2011 - 06:57 PM
Posted 19 March 2012 - 11:45 PM
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!)
Posted 19 May 2012 - 02:00 PM
Posted 30 May 2012 - 08:31 PM
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.
Posted 03 August 2012 - 02:53 PM
No offense meant to anyone by my post. I just figured if you can't join 'em, shock 'em!
Posted 22 August 2012 - 11:19 AM
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.
Posted 01 April 2013 - 05:25 AM
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 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.
Posted 03 May 2013 - 11:58 AM
Im the same as outcast. With mild narcolepsy, I can go to sleep at anytime. Which is awesome.
Posted 03 November 2013 - 04:35 PM
Posted 03 November 2013 - 04:42 PM
Posted 05 November 2013 - 08:03 PM
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.
Posted 17 November 2013 - 03:20 PM
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.