My friends just don't understand! (Just venting)

[OliviaMB717]

Hello! SO i am basically just going to vent.. I am 16 (almost 17) and anyway.. I have been diagnosed with N for a year now, but i have had symptoms my whole life. But just recently it has gotten really bad.. Anyway.. So i tell my friend who we will call Goose, all about it.. And she is like "yeah yeah" and understands and everything.. Well I, and my friends start getting used to it.. And i stop bringing it up and everything.. Well.. There are a lot of things that happen when you have N, i for one have HH, and i had severe EDS.. Well on many occasionals Goose my best friend.. Has woken me up in class, after i insist she not do that for fear i may act out my dream (which i have done before) But she does it anyway.. She can never wait 2 minutes.. And that sort of makes me upset.. Because time and time again, i tell her not to.. Secondly.. She knows (or at least i thought she knew) that i cannot help it when i fall asleep, i just do, it's a part of me. Well anyway, i feel asleep in Child Psych and we have a really nice teacher. And we sort of hinted i had N one time but i didn't really tell her.. I think she thought i was kidding anyway Goose was the one to say it.. But that doesn't matter, anyway.. So i was having really bad sleep attacks the whole day. And in child psych we were just taking notes, and i have trained myself to sleep in between the lectures. So that is what i was doing. Anyway, that plan fell through and i ended up falling asleep as the teacher was saying something important, and she saw me and yelled at me yadadada.. SO i try my hardest to fight my brain and wake myself up.. Well as some of you may know that can be a fairly difficult task. And i failed. So i laid my head back down on my arms and sort of dozed off again.. Well Goose got upset and trying to be the big stuff said "Olive, wake up" and gave this snotty sigh like "Geez don't fall back asleep you idiot" So right then i basically yelled at her telling her i couldn't help it. And anyway, that just bothered me.. It has been bothering me. She is supposed to be the friend who understands most, but is the one who seems to understand least. And another thing.. Okay, like.. I get cranky sometimes if i fight off a sleep attack, if you have done it, you know that if you win at the fight, you will pay for it.. You are no longer just sleepy, you become physically tired, and mentally, and emotionally, because you just fought your brain.. Anyway well, i do that a lot since my teachers do not know i have N, and so when i finally get to yearbook, i like to sort of rest because i can. And well Goose, who just CAN'T seem to understand.. Does things and all that, like a normal person who doesn't have N, and she always just says things, and it normally, wouldn't get me upset, but when i am that just.. Drained.. I can be sort of mean, and say mean things i don't really understand.. Well it is not right on my part. But Goose asks for it sometimes. And i have told her that, that can be a reason why i am so cranky. I note that what i may say is not the nicest thing and i do say sorry (they aren't the meanest things either) Mostly it is "Shut up" and "Go away" or "i'll stab you" (With a pencil) Jokingly i said that one. Anyway.. And she thinks, and i know it is hard to grasp, that i cannot every week-end, have a sleepover and sleep in tents.. I love my week-ends, i love sleeping and i love being able to sleep on weekends and get up whenever i want.. Unlike my usual 6:30 AM school day wake-ups.. But a certain someone cannot for the life of her.. Understand.. My weekends are like my sleep catch up days.. And i need them greatly. She also cannot understand that after school she cannot always come over.. I enjoy my naps a lot.. I have told her that i want to take a nap but miss control freak doesn't care and comes over anyway because "it's hash night" or some other odd reason.. And it gets me cranky then she gets angry and all that junk.. And i know N can be a difficult thing to understand.. But i don't know how else to get her to understand.. She just.. Won't.. She understands sometimes, but when it doesn't benifit her in anyway she just can't seem to understand it. And sometimes i let my N have me, instead of me having my N lol (if you can understand that) But anyway.. I just needed to vent! AND ANOTHER THING (This just bothered me) and this is a different person, we will just call her Mo, so i was at a small party with my friends (Goose was there and understanding this time) And anyway it got brought up that i had N and anyway Mo, was like "Oh don't worry, i USED to have it too" Yeah.. No she didn't lol! You can't get rid of it.. Anyway i think she doesn't quit understand what it is.. It is more then just being sleepy.. She was probably suffering from minor EDS, but definitely not N.. Trust me.. I am liek a pro on who has it and who doesn't (mom has it, i have it) And anyway, that bothered me.. I wanted to tell her that she didn't.. But i was in too good of a mood, and i am not a fighter by any means. Anyway.. I think that is just about it.. I just wish like people could understand. Like i don't like telling people i have it because then i think they'll think that i am feeling sorry for myself or something like that. But I am not.. And i mean, it's a part of my life, something i have to live with.. But i am still really hesitant on telling people. Especially teachers, other students, etc. I am a private person, but i don't want people to think i am feeling sorry for myself, or just not understand the severity of it. And i have it sort of bad one time i had a sleep attack falling UP the stairs.. THat was scary lol.. I just sort of stumbled though and composed myself. Anyway though.. I think there should be more awareness for N, so people can understand it better. Anyway, that is enough jabbering on for one day huh? Thank you for reading (if you did.. And kudos if you got this far) And please vent your problems in this post too! We ca all share our frustrations!

[Notsosleepy]

i totally understand, and here is the funny part, you are having all these problems with you bf who is 16...i am having the same problems with my parents, coworkers, and other family...all who think they are so mature...lol

if you want to have your friend understand better, maybe you could see if your dr. has a pamphlet about Narcolepsy that you could get...have her read it and let her ask questions...


also, This link might help you explain what it is like to have narcolepsy and how tired you really are.

http://www.netscape.com/viewstory/2006/06/19/what-happens-when-you-stay-
awake-for-11-days/?url=http%3A%2F%2Fwww.damninteresting.com%2F%3Fp
%3D133&frame=true

(you need all of this ^ to get to the right page so copy all 3 lines from above and paste in the address line)

Just pick out your symptoms and see how many days without any sleep you have to have before you start suffering.

* After missing one night of sleep, expect fatigue, reduced attention span and problems with short-term memory.
* After missing 2 to 3 nights, one will also suffer poor coordination, muscle twitches, marked loss of concentration, impaired judgment, blurred vision, nausea, and slurring of speech. Often one will experience episodes of microsleep (briefly sleeping for a few seconds at a time, without being aware of it).
* At about 4 to 5 days without sleep, expect extreme irritability, hallucinations, and delusional episodes.
* After about 6 to 8 missed nights, add slowed speech, tremors in limb extremities, memory lapse, confusion concerning one's own identity, unusual behavior, and
paranoia to the list.
* After 9 to 11 nights without sleep, fragmented thinking occurs (beginning sentences without completing them), and prolonged episodes of unresponsive "conscious stupor."

"The longest recorded stint of deliberate sleeplessness was a science experiment by seventeen-year-old Randy Gardner in 1965. He managed to stay awake for 11 days (264 hours) without the use of stimulant drugs, though he did keep assistants on hand to prevent him from sleeping. By the end, he had experienced the full gamut of symptoms, including hallucinations and stupor, but he was able to suppress these symptoms while presiding over a press conference on the final day. Researchers then attached EEG monitors to his head as he went to sleep, which took less than four seconds. He awoke after sleeping for about 14 hours, and said that he felt fine."



you can read the whole article on that link, but the quotes above are from it...the key here is that you are having severe symptoms of sleep deprivation, but it doesn't help when you sleep for 14 hours....a normal person can recover in that time...so if people can understand that you are totally sleep deprived and your body can NOT fix it by sleeping, maybe they can wrap their heads around what you are experiencing.... hopefully...


(maybe you could have your friend try an experiment...see if she will stay awake all night, and not take a nap or go to bed early the next day...then have her try to stay awake the 2nd night...then she might start to understand a tiny bit of what you are experiencing every day... sometimes the only way to truly understand is to experience it...)


About your friend: i have put together all the things you said about her in one spot, under what i am writing now...

"Goose is my best friend.. Has woken me up in class, after i insist she not do that. But she does it anyway.. She can never wait 2 minutes.. And that sort of makes me upset.. Because time and time again, i tell her not to... Secondly.. She knows (or at least i thought she knew) that i cannot help it when i fall asleep, i just do, it's a part of me... And we sort of hinted (to the teacher) i had N one time but i didn't really tell her.. I think she thought i was kidding. anyway, Goose was the one to say it.. But that doesn't matter... "

"Well Goose got upset and trying to be the big stuff said "Olive, wake up" and gave this snotty sigh like "Geez don't fall back asleep you idiot" ... that just bothered me.. It has been bothering me. She is supposed to be the friend who understands most, but is the one who seems to understand least..."

" Goose, who just CAN'T seem to understand. she always just says things...But a certain someone cannot for the life of her.. Understand.. She also cannot understand that after school she cannot always come over.. I enjoy my naps a lot.. I have told her that i want to take a nap but miss control freak doesn't care and comes over anyway because "it's hash night" or some other odd reason.. And it gets me cranky then she gets angry and all that junk.. And i know N can be a difficult thing to understand.. But i don't know how else to get her to understand.. She just.. Won't.. She understands sometimes, but when it doesn't benefit her in anyway she just can't seem to understand it"


some of the things you have written are exactly the same things i have thought and said so much about people in my life and their inability to understand...

Friendships are a tough thing, especially in highschool. let me say 2 things: first, i understand your frustrations 100%. Second, i had a friend in high school who seemed to be a lot like your bf. it always had to be her way...she made the decisions...she was picky and bossy and snotty at times and it bothered me a lot of the time and sometimes we'd fight about things, BUT, she changed over time and now she is my closest and dearest friend, who listens when i need to vent and helps me know that i am not alone. she is the only person from high school that i have kept in touch with. we have been able to help and support each other through so many bad days and hard times. i don't know what i would do without her.

i hope that you and your friend can work this out and have a great friendship.


at the end of your post you said,

" I just wish like people could understand. Like i don't like telling people i have it (N) because then i think they'll think that i am feeling sorry for myself or something like that. But I am not.. And i mean, it's a part of my life, something i have to live with.. But i am still really hesitant on telling people. Especially teachers, other students, etc. I am a private person, but i don't want people to think i am feeling sorry for myself, or just not understand the severity of it. . I think there should be more awareness for N, so people can understand it better. "

i am like this too, and i hope you don't blow off what i have been saying because i am not in highschool anymore. i look back at myself then and i can see how much i have learned since, it blows me away, (i cringe after writing this because i remember how much i hated hearing stuff like that from people who were older than me.) sorry...

i think you should let your teachers know... maybe take them a Narcolepsy pamphlet and let them read it too, and ask you questions about it and how it affects you. if they know, then you won't have to get yelled at in class , and they have to, by law, make reasonable accommodations for you...like, let you sleep if you can't avoid it.

maybe i have said too much...reply and let me know what you think, i would really like to talk more...

[OliviaMB717]

Awww You are so sweet and nice! Thank you so much for your understanding (And actually reading the whole thing) It really meant a lot to me. And that you took your time and tried to help me! (which you did! ) Anyway... I think next yeat (since it is almost summer) i will let my teachers know.. Since N doesn't seem to get any better, just worse hehe! And i think i am going to e-mail my friend like that thing about hte 11 days or something so she can get a better idea of what i am going through, and why sometimes i can be a crabapple! Anyway toodle do for now! Bye bye.

[sleepy girl 7]

OliviaMB717

I wanted to tell you that reading your "venting" has helped me out. I am a mom of a 12 year old and as much as I am the one that "understands her the most" - I do have times where I just hope for her to be "normal" and I forget how hard it is for her. My mom also had N but my daughters N/C and she is so much worse than what my mom. I noticed sleeping problems in my daughter since 15 months old. She has the HH all the time and she is really scarry if you try to wake her. She has attached me at least 25 times in the past 3 years. It is hard for me because I remember the events and she just knows she had a very scarry dream. But she never remembers how mean and hurtful she is when these HH happen.

Good luck to you and please let your teachers know about your situation. You have rights (like being able to nap during the day - or have extentions on your home work). Teachers are more understanding when they are informed than when they are in the dark.

Sleepy Girl 7.....

[LauraSakura]

I understand it alot. I'm in college and you would think it would be better... but its not. People I know sometimes think its fun to come up behind me and startle me, so my knees buckle and i end up on the floor. They bug me when I can't go out all the time because after going to class for the day, I'm too drained to do anything else. This will be my first time going back to college knowing that what is wrong with me is N. should I tell my professors? I want them to understand why I can't stay awake in class, but I don't want them to look down on me or treat me any differently.

[ste]

You should definately tell your prof./teachers maybe not in public but pull them aside and have a quiet word or send them an e-mail. And your friends people you care about, and if they care about you they will make the effort for you. It may effect how you interact socially.

I spent 4 years at music college and the people there can be horrible and bitchy enough, they dont need an incentive. Falling asleep in lectures or coffee bar and waking to see 3 or 4 people staring at you, then give each other a look and start laughing as well as the Prof. who has a wry smile on his/her face. Fellow students AND prof. may just assume that your out partying all the time and not taking studies seriously. That may affect how they grade your work, and if people want to interact with you. And if people have already judged you when they dont even know or understand you, why should you make the effort to know them?

It can make you paranoid, or does it?

Now i am training to be a teacher and my prof. and staff have been very supportive, i informed them of my N asap.
Everyone is unique no two people are the same. Dont worry about being treated different, other people in your class dont experiance what u do. Everyone should be treated as Equally, which means people are treated differently to meet there individual needs.