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#1 emilatte

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Posted 08 June 2012 - 06:48 PM

So, my name is Emily, I'm 21 and I was diagnosed about a year and a half ago while I was in Culinary School. It was VERY difficult... but I did graduate with an associates degree in Patisserie and Baking. :D I don't have much of a social life, and it's extremely hard for people to understand... Right now I have 3 jobs. I just got hired at the third place and I'll start in 2 weeks. Up until now I've only worked evenings... so like 1 or 2-9:30 or 10 shifts. Like many of you, I wake up an hour before I have to go to work. This gives me enough time to get all ready and eat before rushing to get to work on time. SOOO many people ask me why I don't go hang out with people before I go to work (or even after, cuz let's face it... 9:30 isn't that late for most people) they just don't understand. If I do make plans before work half the time I cancel them because I'm too tired and wanna save up my energy for when I work. AND THEN when I try to explain things to my co-workers or friends they either blow it off, think I'm exaggerating, or think I'm coming up with excuses to not hang out. I don't have a ton of friends... and it's kinda depressing at times.

THE POINT OF THIS POST is to find friends who know what I'm going through. People I can just talk to whether it be about N or some movie that came out. I guess what I'm trying to say is I want to meet and develop relationships with people who understand. I'm super new to this website and I'm not exactly sure how this works... but shoot me a message or comment or whatever and hopefully we can all find each other :D

#2 Eyelid Watcher

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Posted 08 June 2012 - 09:42 PM

I stayed awake through "The Avengers".. Liked it.. You seen it? Haha.. I am New to this site as well.. And I understand everything the you are going through.. Personally! My friends, who are becoming "old" friends, just don't understand.. They think that I am being unsocial..

#3 emilatte

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Posted 08 June 2012 - 11:42 PM

I actually did see it!! And I absolutely loved it! I'm such a nerd and Robert Downey jr is a stud!!! My friends think im being anti social too... It sucks

#4 LauraL

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Posted 09 June 2012 - 11:23 PM

I feel a little bit too old (33) to be posting in generation Z, but I just wanted to share a suggestion. I think a lot of my friends got frustrated with me when I was sleeping through parties I said I'd go to, and otherwise just feeling too tired to hang out. Now that I'm diagnosed and being treated and feeling better, I find I want to be more social, but a lot of stuff people invite me to (late night movies, dancing, long weekends) just doesn't work for me. So I've become more proactive--when they invite me to some event that doesn't work for me, I let them know that I can't make that, but I'd love to [fill in the blank]. Getting together for lunch and/or going for a walk seem to be my social world for the moment, but it works. I think my friends feel better about the situation because they know I'm rejecting the activity, not THEM, and I get to enjoy an activity with them that doesn't exhaust me or keep me out too late.

Just another bit--at 25 I developed a serious case of clinical depression. A roommate of mine, who had OCD, warned me that I shouldn't tell anyone, and should just fake being happy for the sake of maintaining friendships. I didn't like that idea. Over time, I opened up about my condition to my friends. Some of them did get freaked out and kind of disappeared, like my roommate warned me. But some of them stuck around, showed tremendous caring, and were super supportive. It wasn't fun, but it was a way to weed out the "fair weather friends." I'm still really close with a lot of those friends, and I've had the chance to give back some of the support they gave me.

Good luck navigating this!

#5 Asleeper

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Posted 09 June 2012 - 11:27 PM

It's hard to find others with narcolepsy because there are so few of us and we all look pretty normal except when we've fallen asleep in some odd public place. I live not too far from Chaska. There is a support group here in the Twin Cities called MOONS MN you can find us through google and there is also a Facebook group page. We meet once a month or so. The meetings are posted on the Facebook page. There is also a Narcolepsy Support Group in Facebook that has members from all over and some even international.
I do really enjoy this Narcolepsy Network because of its privacy and broad range of topics.
Outside of these groups, I think I have only met one other person with narcolepsy and that was about 20 years ago. It was after talking to him that I decided to get tested.
I find I do not get much understanding from friends and coworkers. They just can't understand it. It's hard to do things after work because I need to go home and get a nap before I can think about doing anything in the evening. And then I don't want to drive into town again.
If you have any questions email me, Tom

Oh, and the last good movie I saw was that animated Pirate movie

#6 emilatte

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Posted 11 June 2012 - 11:25 PM

It's hard to find others with narcolepsy because there are so few of us and we all look pretty normal except when we've fallen asleep in some odd public place. I live not too far from Chaska. There is a support group here in the Twin Cities called MOONS MN you can find us through google and there is also a Facebook group page. We meet once a month or so. The meetings are posted on the Facebook page. There is also a Narcolepsy Support Group in Facebook that has members from all over and some even international.
I do really enjoy this Narcolepsy Network because of its privacy and broad range of topics.
Outside of these groups, I think I have only met one other person with narcolepsy and that was about 20 years ago. It was after talking to him that I decided to get tested.
I find I do not get much understanding from friends and coworkers. They just can't understand it. It's hard to do things after work because I need to go home and get a nap before I can think about doing anything in the evening. And then I don't want to drive into town again.
If you have any questions email me, Tom

Oh, and the last good movie I saw was that animated Pirate movie


Thank you SOO much!! I was trying to find Moons on facebook but I kept getting a bunch of other pages... BUT I did find it after reading your post!!!

#7 T.farah11

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Posted 18 July 2013 - 08:46 PM

I hear that one. I can't tell you the number of times I've had to ignore friends or going out to rest up for class or work. It's like you can stay up till 4, wake up at 7, AND be productive the next day?! I hate you lol Congrats on pushing through to graduate. I had to take last semester off after 3 and 1/2 years of work and college...Ughhh narcolepsy sucks