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#1 gladtoknow

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Posted 27 April 2008 - 10:02 AM

For those of you that are single, how do you meet other single people? Or if you are currently dating someone, how did you meet him/her? I am a single parent. My N is not super severe and I don't have C. BUT, my N does affect my ability/desire to socialize. It takes alot of "work" to think about what to say to someone that you don't really know; it takes energy to be "up" enough to get ready and go out and to stay "up" while you are out. The thought of getting ready to go out in the evening and to be "fun" while out, exhausts me and makes me want to cry. Plus I have to arrange a sitter, etc. So I just don't do it. So how does everyone else do it?????

#2 kogeliz

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Posted 27 April 2008 - 10:09 PM

Well...
...at the beginning of dating someone, I don't really get tired. I'm guessing this is because of the 'excitement' or nerves.

The men I have dated knew about my narcolepsy and found it interesting. This includes my current boyfriend.

So, I think when I am too tired to do anything... or if I am napping during small parties, he doesn't mind. He also likes explaining N to people.
I don't mind people knowing about my N because it makes me look les rude and it also gives people a chance to be educated about N.

My probalem is keeping friends. I am horrible about following through with plans, being on time, etc.
I have lost a lot of friends because of this.




#3 Henry G

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Posted 01 May 2008 - 11:10 AM

QUOTE (gladtoknow @ Apr 27 2008, 04:02 PM) <{POST_SNAPBACK}>
So how does everyone else do it?????


I dont know bout others.

But with a lot of difficulty.

Relationships? Forget it.

And real friends? (Talking about people I met in real life)
I have none apart from 1 chap in Brazil. And That is all.

I haven't had a girlfriend for over 5 years. Nor do I want one. I fear very very few ppl are capable of being that understanding, tolerant, and specially loving.

Back to "friends"

These days people who say are my friends - are people that still need me somewhat, specially business-wise.

People I made very rich or very successful but are still tied to me somewhat - still need tech support.

See, people I did make rich/successful/happy/whatever and do not need me any more simply disappeared for good. Which is fine.

Not that I am bitter.
Cos Narco gives me apathy. I dont hurt over lost friendships - I feel nothing.

And I could be judged as not the nicest of person either.
Due to the same apathy, I tend to shield people out from my life if I feel am just another casual acquaintance to them.
So I am selective, too selective.

Acquaintances, friendly acquaintances, sure, those I hear from time to time (on a yearly basis)

I dont long for a friend, but wished I could have a string of affairs. The excitment also keeps me alive, awake. Lovely smile.gif

Of course, a lot of what I am typing or saying is negative silly childish (may feel that way). That is because Narco drags me down there to a greyer realm.

I long to be alive, happy, full of energy.

I long to have the power to be awake and make others awake.

And make a positive difference to people and this world.

Because of the varied shades of Narcos, I have many 'me's ... all the above is the manifestation of just one of them.

No wonder relationships can be hard. Zilch.

hugs to you all

#4 Lovemyhusband

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Posted 01 May 2008 - 01:57 PM

QUOTE (Henry G @ May 1 2008, 11:10 AM) <{POST_SNAPBACK}>
I dont know bout others.

But with a lot of difficulty.

Relationships? Forget it.

And real friends? (Talking about people I met in real life)
I have none apart from 1 chap in Brazil. And That is all.

I haven't had a girlfriend for over 5 years. Nor do I want one. I fear very very few ppl are capable of being that understanding, tolerant, and specially loving.

Back to "friends"

These days people who say are my friends - are people that still need me somewhat, specially business-wise.

People I made very rich or very successful but are still tied to me somewhat - still need tech support.

See, people I did make rich/successful/happy/whatever and do not need me any more simply disappeared for good. Which is fine.

Not that I am bitter.
Cos Narco gives me apathy. I dont hurt over lost friendships - I feel nothing.

And I could be judged as not the nicest of person either.
Due to the same apathy, I tend to shield people out from my life if I feel am just another casual acquaintance to them.
So I am selective, too selective.

Acquaintances, friendly acquaintances, sure, those I hear from time to time (on a yearly basis)

I dont long for a friend, but wished I could have a string of affairs. The excitment also keeps me alive, awake. Lovely smile.gif

Of course, a lot of what I am typing or saying is negative silly childish (may feel that way). That is because Narco drags me down there to a greyer realm.

I long to be alive, happy, full of energy.

I long to have the power to be awake and make others awake.

And make a positive difference to people and this world.

Because of the varied shades of Narcos, I have many 'me's ... all the above is the manifestation of just one of them.

No wonder relationships can be hard. Zilch.

hugs to you all


I really thought for a second that my husband wrote that post (except for the getting people rich part laugh.gif ).

Acquaintance. ...that is his favorite word. He always tells me I am his only friend everyone else falls under the acquaintance lable.

He has a really bad outlook on poeple and is often told that he seems to be a real harsh person. Of course if he let people in once in a while they would realize what a great man he really is. I guess I will thank my lucky stars I was able to get to know him so many years ago.

It's to bad you don't live in our area you two could be best aquaintances. wink.gif

#5 Aconm

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Posted 17 June 2008 - 10:40 PM

This is my first time to this forum. Thank you for having me.

I do not have narcolepsy. However, I do know an extraordinary girl who does, and I think I am in love with her.

This woman has some much grace, it's incredible. Absolutely humble to the core. Without doing anything (other than be herself) she inspires me to be a better person...more honest, more goal oriented, more real, more humble, more big picture, less gossipy, less interested in being involved with stupid, material stuff, etc. She really is an amazing person.

Initially, I came here to learn and educate myself on what is involved in dating someone with Narcolepsy. And (more importantly to me) try to understand what goes on inside the head of someone with Nacrolepsy, when someone is clearly interested in them.

Again, I came here to read, not write. However, after reading some of the comments here, I felt the need to offer some encouraging words.

We all know that falling in love requires ripping open the rib cage, so the heart can be exposed. Yes, that friggin hurts!!! But the pay off is huge!! There is no greater feeling in this world than being in love. And that my friends, is the glory of being in love.

My advice is...never give up, and please, please open up!! You are very special and there are people out there who want to love you. I am one of them. Trust me, I don't mean to sound like a cheesy romance novel. I know I am speaking as an outsider. However, the more I understand Narcolepsy, the more respect I have for people with it. I do not feel sorry for you...on the contrary, I admire you.

Unfortunately, my story seems to be ending sadly and unfinished. The person I speak of has recently moved away. She is following her dreams to do great things in the natural medicine field. I would never derail anyone from fulfilling their goals. I do, however, feel that we both missed an important opportunity because of my lack of understanding of Narcolepsy.

I truly wish I had known her better.


#6 nyemvula

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Posted 18 July 2008 - 10:12 PM

QUOTE (Aconm @ Jun 17 2008, 11:40 PM) <{POST_SNAPBACK}>
This is my first time to this forum. Thank you for having me.

I do not have narcolepsy. However, I do know an extraordinary girl who does, and I think I am in love with her.

This woman has some much grace, it's incredible. Absolutely humble to the core. Without doing anything (other than be herself) she inspires me to be a better person...more honest, more goal oriented, more real, more humble, more big picture, less gossipy, less interested in being involved with stupid, material stuff, etc. She really is an amazing person.

Initially, I came here to learn and educate myself on what is involved in dating someone with Narcolepsy. And (more importantly to me) try to understand what goes on inside the head of someone with Nacrolepsy, when someone is clearly interested in them.

Again, I came here to read, not write. However, after reading some of the comments here, I felt the need to offer some encouraging words.

We all know that falling in love requires ripping open the rib cage, so the heart can be exposed. Yes, that friggin hurts!!! But the pay off is huge!! There is no greater feeling in this world than being in love. And that my friends, is the glory of being in love.

My advice is...never give up, and please, please open up!! You are very special and there are people out there who want to love you. I am one of them. Trust me, I don't mean to sound like a cheesy romance novel. I know I am speaking as an outsider. However, the more I understand Narcolepsy, the more respect I have for people with it. I do not feel sorry for you...on the contrary, I admire you.

Unfortunately, my story seems to be ending sadly and unfinished. The person I speak of has recently moved away. She is following her dreams to do great things in the natural medicine field. I would never derail anyone from fulfilling their goals. I do, however, feel that we both missed an important opportunity because of my lack of understanding of Narcolepsy.

I truly wish I had known her better.




Hey I just wanted to say that your story made me smile, and to encourage any people out there struggling with N not to give up! There are people out there who are willing to do their best to understand you and love you no matter what. I may be only 18, but I have been blessed with the most amazing boyfriend a girl could ever want. we've been together for just over 14 months now, and I don't know what I would do without him!! Yes, I often find myself feeling guilty for sleeping in and missing school or church (and therefor not seeing him that day) but he doesn't seem to care. hopefully he won't mind me copying a bit of one of his emails onto here:
"i dont want u to be any different ur fine just the way u are. one of the many things ive learned during Hurricane Katrina is to be happy with who u are the sooner u do that the happier u will be."

I guess all I'm saying is Don't Give Up Hope! There are people out there who are willing to love you for you!! All you have to do is let them wink.gif

#7 Ms.Vanna

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Posted 22 July 2008 - 01:26 AM

Wow, that is awesome that she touched your life in such a powerful way. You should definitely attempt to keep in touch with you. Realizing it or not, people like you are very hard to come y when struggling with such a disabling ,uncontrolling disease. Keep on with your research. The more people that become educated about this disorder the more help it will be for those of us who have it.


QUOTE (Aconm @ Jun 18 2008, 04:40 AM) <{POST_SNAPBACK}>
This is my first time to this forum. Thank you for having me.

I do not have narcolepsy. However, I do know an extraordinary girl who does, and I think I am in love with her.

This woman has some much grace, it's incredible. Absolutely humble to the core. Without doing anything (other than be herself) she inspires me to be a better person...more honest, more goal oriented, more real, more humble, more big picture, less gossipy, less interested in being involved with stupid, material stuff, etc. She really is an amazing person.

Initially, I came here to learn and educate myself on what is involved in dating someone with Narcolepsy. And (more importantly to me) try to understand what goes on inside the head of someone with Nacrolepsy, when someone is clearly interested in them.

Again, I came here to read, not write. However, after reading some of the comments here, I felt the need to offer some encouraging words.

We all know that falling in love requires ripping open the rib cage, so the heart can be exposed. Yes, that friggin hurts!!! But the pay off is huge!! There is no greater feeling in this world than being in love. And that my friends, is the glory of being in love.

My advice is...never give up, and please, please open up!! You are very special and there are people out there who want to love you. I am one of them. Trust me, I don't mean to sound like a cheesy romance novel. I know I am speaking as an outsider. However, the more I understand Narcolepsy, the more respect I have for people with it. I do not feel sorry for you...on the contrary, I admire you.

Unfortunately, my story seems to be ending sadly and unfinished. The person I speak of has recently moved away. She is following her dreams to do great things in the natural medicine field. I would never derail anyone from fulfilling their goals. I do, however, feel that we both missed an important opportunity because of my lack of understanding of Narcolepsy.

I truly wish I had known her better.


#8 mtc

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Posted 15 September 2008 - 09:43 PM

I have had Narcolepsy since 1980. I HAVE to fall asleep evey two hours no matter what. I, too, find it difficult to have friends because it takes a lot of effort to not only understand the need to fall asleep, but adjust to all the limitations. I find it is much easier to isolate myself. It just takes too much energy. So of course, dating is out of the question!! I find that initally people think they will understand, but when the reality of having to stop an activity every two hours so that I can fall asleep becomes evident it is just not worth it.

#9 NannyMissB

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Posted 18 October 2008 - 05:45 PM

Wow. Interesting to hear others' tales of woe and also victories.

My N is luckily managed by meds and planned (and sometimes NOT so planned!) naps.

My relationship issue is that by boyfriend of one year can not handle my forgetfulness (at times nor can my employer).

He is understanding and also amused at my napping issue and understood when I fell asleep at a party where I was meeting his family.

They were actually facinated as none of them had ever witnessed such a thing.

But, alas, when I am tired and fighting a sleep attack and go on "auto pilot I don't retain much and this really gets him.

Anyone out there with suggestions, empathy or a story to make me not feel so frustrated???

B

#10 Mike M

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Posted 18 October 2008 - 08:00 PM

NannyMissB,

You definitely have empathy from me. I too start to struggle later in the evening. Some of the worst nights are ones when I have taken my Xyrem, but still think I should try to get something else done. I have never been one to drink alcohol, so you can imagine my wife's frustration when she has to deal with narcolepsy Mike who is also looped out on Xyrem. We have only had two or three really bad nights, but she does get horribly frustrated with me.

I am wondering if it would work for you and your boyfriend could pre-plan the night. That way, you can both know when the evening will "end." It removes some of the spontaneous fun that a couple can have, but it also could help the two of you avoid situations when you know that you won't retain anything else. I find that things go much better for my wife and me when we have a plan for the evening.

I do hope that you can find a way to resolve the situation. I am also hoping that he understands that your exhaustion and lack of memory are not your fault. It is simply the reality of narcolepsy. Good luck!

#11 dogdreams

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Posted 19 October 2008 - 12:38 AM

I met my current SO while attending a friend's wedding. He was the roommate of another friend I was staying with for the week. My N was kind of a litmus test for him. I had had it with men walking all over me, abusing me, or ignoring my needs because of my N/C. I decided he could take me as I am and if he didn't like it he could take a hike. I told him as much. Today we have been together for almost 4 years and have a beautiful child together. He is the most patient, caring, attentive SO I could have ever hoped for. He's very understanding and supportive.

I couldn't even begin to tell you how to meet people to start dating, but be picky as hell when you do meet them. There's no point wasting your time with people that can't handle living with N.

#12 hathor

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Posted 29 October 2008 - 09:47 AM

i never bothered going out and meeting people when i was younger so it got harder as i got older. so i have never had a relationship. which is really sad i know bt i find it difficult enough to get by with daily stuff with out the complications of dealing with another person. Sometimes tho i wish i had been more normal as a kid so i didnt find it so difficult to meet people now.im a shy person anyway without having to explain that i could drop off at any time or having a cataplexy attack (which affects my face muscles really bad!!!) men i meet dont normally stop around long enough to get to that conversation but i think that is my fault mainly because i dont know how to explain and i like people to know instead of just thinking im weird and running away!!!

#13 Lais02

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Posted 29 October 2008 - 10:52 AM

QUOTE (hathor @ Oct 29 2008, 07:47 AM) <{POST_SNAPBACK}>
i never bothered going out and meeting people when i was younger so it got harder as i got older. so i have never had a relationship. which is really sad i know bt i find it difficult enough to get by with daily stuff with out the complications of dealing with another person. Sometimes tho i wish i had been more normal as a kid so i didnt find it so difficult to meet people now.im a shy person anyway without having to explain that i could drop off at any time or having a cataplexy attack (which affects my face muscles really bad!!!) men i meet dont normally stop around long enough to get to that conversation but i think that is my fault mainly because i dont know how to explain and i like people to know instead of just thinking im weird and running away!!!


I agree! I am shy too, and yes I like people to know rather than just think I'm weird. Although then if I start explaining N too soon, I still end up looking really weird.

#14 hathor

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Posted 29 October 2008 - 11:42 AM

QUOTE (Lais02 @ Oct 29 2008, 03:52 PM) <{POST_SNAPBACK}>
I agree! I am shy too, and yes I like people to know rather than just think I'm weird. Although then if I start explaining N too soon, I still end up looking really weird.



i find the cataplexy harder to explain. especially if im tired at the time. its easy to tell someone that you might fall alseep at any time but the cataplexy i find complicated. my friends know when im tired because i look stoned or so they tell me but a stranger can so easily get the wrong idea. Where i live the town is well known for the drug problem it has. i hate it when people ask me what i have taken or been smoking to look like that. walking down the street or talking when im tired and my words are slurring people instantly think the worst.having these conditions has made me learn to be less judgemental about people i just wish everyone could learn not to judge people it would make life so much easier.