Narcolepsy.

[foreversleep]

I have severe type 1 narcolepsy which might explain my user name.  I spend a lot of time asleep which turns my life inside out since I spend more time dreaming than inhabiting the Real World (TM).  Coming back from dreaming and waking up is always horribly disorientating, - my body clock is right out of kilter and I'm confused as to what day it is and what time it is.  The dream seems to cling to me so I feel like I'm half in and half out of what I'm told is reality.  My usual reaction on waking up is feeling disappointed.  That does not mean I'm suicidal by the way.

In the Real World (TM) there are so few things I can do that I used to be able to do, but in the Dream I'm free to do what I want.  Back in my hippie phase days when I was young I learned active dreaming so I rarely get nightmares.  I'm the  Dreamer so I'm in charge.  Five hours might pass in the Real World (TM), but in the dream it might be three days so that will give you a hint as to why always wake up completely disoriented.

 

Narcolepsy is caused by a fault in the sleep centre in the brain (Keeping it simple here) and there isn't any cure.  All the meds that are used to treat narcolepsy only attempt to moderate symptoms and most of them have nasty side effects.  Before anyone starts making suggestions I'll tell you that I'm apparently one of those rare people who can't tolerate any of these meds and they make me feel worse than having the illness.  I've also had two 24 hour sleep studies and the sleep specialist I saw said he didn't know how I managed to have any quality of life.  I wonder about that too sometimes.

Narcolepsy isn't that you fall asleep all the time, it's that your body doesn't know how to stay awake.

 

When people ask what having narcolepsy feels like I tell them to not sleep for three days and three nights and then they might have some idea.  What is most annoying for me is that my brain is fogged up and my thought processes are slowed.  I used to write, but I can't do that anymore because it's too difficult keeping track of things as the story develops and my ability to use a keyboard to write anything coherent goes out the window.  And before you say, 'But you're doing it now,' this post will be searched over  and corrected several times before I finally press the 'Submit Topic' button.

I used to love reading too, but that doesn't work anymore unless I put a lot of effort into it and Effort = Stress which makes me fall asleep.

 

This is not a moan post by the way.  With the help of the brilliant staff at our local mental health service I got over the 'oh woe is me stage' a while ago.  I seem to be able to play RPG type games though with Oblivion being my favourite.  I do need to have a tailored custom character though which is why I have devised and play risen UnDead characters for myself.  Risen UnDead are not zombies by the way.  They possess an intelligence that is much like my own is now and their coordination and agility isn't good either which again reflects my own situation.  And as for rising from the dead, - well I guess I've got a fairly good handle on how that feels.

I used to do a lot of modding before this illness I have started to bite harder and I'd like to do it again.  It's going to be a steep learning curve though and anything I do is going to take ages to get finished, but I still want to try.

 

I do inhabit narcolepsy forums from time to time, but I find them a bit of downer with people wanting their old life back and stuffing their faces with some seriously risky meds in a desperate effort to turn back the clock.  One medication for narcolepsy carries the warning 'May cause sudden death' and another is known to sometimes stop you breathing.  Me telling people on those forums to forget it your old life is over forever is not exactly popular.  Fortunately I live in a country that  has a humane social welfare system.  Most folk  on those forums having big problems with their illness live in a certain supposedly first world country that leaves people to die in a ditch if they don't have medical insurance.  But I shall say no more on that subject since I don't want to start any flame wars.

 

Narcolepsy is one of those hidden illnesses that many people don't understand.  I try not to get irritated when people say, 'but you look so well'.  When people who have known me a while say it I have to sit on any urge to go and get an axe.  Mind you with my bad coordination they'd be pretty safe if I did.  And as for people giving me well meaning but completely useless advice..............

 

Well I've most probably bored you all enough by now.  A putty medal to anyone who managed to read my post all the way to the end.

 

 

[2dk2c.2]

I never learned how to talk to strangers, so apologies in advance, but you listed about three or four awesome things.

 

Well you learned to deal with dreams, mine get worse all the time. I throttled some furniture in my sleep the other day, yelled at people who weren't there...I don't have anything close to what you've got but when my body wants to sleep it is in full command and directs me to sleep NOW. 

  I stopped playing skyrim because of that. I've got a much livelier game now (at least for a couple weeks), so I'm glad about that.

Anyway great story, Thanks.

[Reginald_001]

Not a lot I can say to support. I'm not a kindred spirit and I actually slept too little, most of my life.

I do have something called 'sleep episodes' though and those aren't that fun either.. ?

 

Had a sleep over with a (girl) friend (real friend, not sex friend) one night, this is 30 years ago I was say 16.. I slept at her apartment often, sometimes we'd share the bed, but never sex. Always a respectful distance.. not that I didn't want to.. but she had a boyfriend and we knew eachother since childhood and she literally saw me as brother.. anyway..

 

I apparently got up in the middle of the night.. and pushed myself on top of her as I was trying to kiss her. She pushed me away, then I must have turned around and continue sleeping. I did this full and 100% in my sleep and she confirmed it afterwards, saying I was speaking about 'mathematics' of all fucking things, while I was trying to kiss her and make love to her.

 

Weird thing is, from that moment on.. sex suddenly WAS on the table (I think I rubbed her a bit with my erection and I think it made her see me in a different light.. once she knew).

 

Very weird experience and I made sure to never spend the night alone with a woman in the same bed, that I don't have sex with, just to make sure I don't 'do anything weird' in my sleep. Even during my marriage I slept in a different bed most of the time due to my nightly 'challenges'.

 

When it does happen that I have to sleep alone with a girl, I speak about it openly and explain to them that if have one of my nightly episodes, they need call my phone (I always wake up on the ringtone of my phone).

[foreversleep]

23 minutes ago, 2dk2c.2 said:

I never learned how to talk to strangers, so apologies in advance, but you listed about three or four awesome things.

 

Well you learned to deal with dreams, mine get worse all the time. I throttled some furniture in my sleep the other day, yelled at people who weren't there...I don't have anything close to what you've got but when my body wants to sleep it is in full command and directs me to sleep NOW. 

  I stopped playing skyrim because of that. I've got a much livelier game now (at least for a couple weeks), so I'm glad about that.

Anyway great story, Thanks.

I was into meditation and all kinds of thing back then so active dreaming just got stirred into the pot.  It is a good skill to learn if you're having problems with bad dreams.  And I hear what you're saying about throttling furniture since I can remember punching out some dream entities I didn't want in my dreams anymore and when I woke up everything around my bed was knocked over and I had bleeding broken skin on my knuckles.  They didn't come back anymore after that so I guess it was worth it.

I find if I'm actively role playing my characters and get myself immersed into the game and my character's state of mind and personality it's less likely for me to fall asleep.  It's not a magic bullet though and sometimes my brain just dumps me without warning into full REM sleep which makes it really hard to tell if I'm actually awake or not.

[foreversleep]

23 minutes ago, Reginald_001 said:

Had a sleep over with a (girl) friend (real friend, not sex friend) one night, this is 30 years ago I was say 16.. I slept at her apartment often, sometimes we'd share the bed, but never sex. Always a respectful distance.. not that I didn't want to.. but she had a boyfriend and we knew each other since childhood and she literally saw me as brother.. anyway..

 

I apparently got up in the middle of the night.. and pushed myself on top of her as I was trying to kiss her. She pushed me away, then I must have turned around and continue sleeping. I did this full and 100% in my sleep and she confirmed it afterwards, saying I was speaking about 'mathematics' of all fucking things, while I was trying to kiss her and make love to her.

 

Weird thing is, from that moment on.. sex suddenly WAS on the table (I think I rubbed her a bit with my erection and I think it made her see me in a different light.. once she knew).

 

Very weird experience and I made sure to never spend the night alone with a woman in the same bed, that I don't have sex with, just to make sure I don't 'do anything weird' in my sleep. Even during my marriage I slept in a different bed most of the time due to my nightly 'challenges'.

 

When it does happen that I have to sleep alone with a girl, I speak about it openly and explain to them that if have one of my nightly episodes, they need call my phone (I always wake up on the ringtone of my phone).

Fortunately I don't seem to do anything when I'm asleep except disappear into the Dream's country, - or at least not lately, - but I have heard of people who have narcolepsy who can get out of bed and do all manner of complicated things while they're asleep and be totally unaware of it when they wake up.

But yes I can see how what happened with your friend could be really embarrassing and why it's a good idea for you to warn your women friends about it should you ever share a bed.

[27X]

1 hour ago, foreversleep said:

breathing.

Learning deep breathing techniques will do wonders.

[foreversleep]

Studying Tai Chi when I was younger was good for learning now to breathe properly.  I still use Tai Chi techniques to prevent myself from falling when I'm disorientated.  

 

My mention of breathing was related to a particular 'wonder drug' that's being used for narcolepsy and it has a load of nasty side effects including stopping you from breathing sometimes.

[MrEsturk]

As someone with the opposite problem, you have my condolences. I inherited insomnia from both of my parents. Kind of like how your mind doesn't fully understand when its time to stay awake mine doesn't understand when its time to power down unless I've pushed myself to a state of intense exhaustion. Shame we can't combine our powers and cancel each other out, haha.

 

14 hours ago, foreversleep said:

When people ask what having narcolepsy feels like I tell them to not sleep for three days and three nights and then they might have some idea.

While I've technically never gone three full days without any form of sleep I know the brain fog quite well. When you get several days in a row where you don't get any legitimate sleep so much as you spend your nights rolling around in bed, kind of sleeping for maybe an hour or two here and there only to wake up and have start over again, the fog can start to pile on your daily routine.

[foreversleep]

I've sometimes said to friends who have problems with sleeping that it's a pity that can't parcel up some of my sleepiness and send it to them.  Either way insomnia or narcolepsy, - they are a shit of illnesses to have.