Jump to content


Photo

How To Have Friends At All????


  • Please log in to reply
21 replies to this topic

#1 Sunshine

Sunshine

    Member

  • Members
  • 8 posts
  • Gender:Female
  • Location:Mile High

Posted 21 July 2009 - 12:55 PM

How do any of you narcoleptics have friends at all? I have just one right now...just one. She is the only one that can accept my limitations and not condemn me to loneliness for them. Bless her. However, recently I was told that I should "be more pleasant" and "smile," and that because I am not a "shiny, happy, people" I am not worthy of the friendship of people. It doesn't seem enough to explain to them that I am grumpy because I have been in a constant state of discomfort for the last 12 years. They can't imagine that with a loss of sleep comes intensity to the pain associated with arthritis and lack of muscular rest. It isn't enough to tell them that the postural muscles in my face sag, thus I "look" upset (even when I am not), but regardless, it takes a great deal more effort/energy to smile than it does for them.....and energy is something I lack. Geesh, just saying "hello" can be a chore sometimes.

Now, let's leave aside that physical pain and get to the real reason I am grumpy MOST of the time. I don't have the luxury of being disabled (not that this is a luxury of course). What I am saying is that I do not have friends or family to fall back on AT ALL. I do not have their support emotionally or financially. The only person I have to get me through the good times AND the bad is me. Unless I want to sleep in the streets or become a ward of the state (not sure they would take me), I have to get up, go to school/work and pay my bills. With that work, comes the requirement to think efficiently....something we all know that an unrested brain does NOT want to do. Yet, I must, and I must within an environment of highly intelligent people who expect me to be the same. I must because blue-collar jobs, or at least the ones that do not require much thought, are either too physically demanding on my unrested body OR, they don't pay the bills. I save up every ounce of what I have in me just for my job. When the work-day is over, nothing is left and I am GRUMPY.

Don't think that I am mean...no, I am not mean to people. I am just grumpy. I hurt, I am tired and I often feel like even the little things are difficult to do. Forgive me if I don't walk around with a smile on my face or the belief that most moments of my life are wonderful. Frankly, they aren't.

It doesn't seem to matter that I have faced not just this disorder, but a life of battles with a poor, abusive family....yet I still managed to eke out 3 bachelors degrees and now a masters. What I am made of, and the perseverance, and my strong will to survive are not important to people in their "friends." My loyalty, my love and my acceptance of all of their quirks and faults is not enough. My absolute desire to actually KNOW them is neither here nor there. The only thing that seems to matter is that I am a shiny, happy people. WTF? Then, they expect me to not be angry about this?

I see on here people questioning finding the time and energy to "maintain" friendships, such as making time and inviting them to do stuff. I can't even get that far. I am in pain; I am tired; and my brain isn't firing enough to make idle chit-chat (of which I really don't care about anyway). I can barely function, yet I am supposed to be smiling and happy in life. I might have something to smile about if people would be more understanding.

Okay, now some of you are going to jump to the conclusion...oh, she is depressed. No, I have been cleared by more than one doc. I am not depressed. I am frustrated. I am a good persona and I like me very much. I am just tired of having to be "perfect" or be alone.

So, I ask again....how do you have friends at all?

#2 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 21 July 2009 - 01:37 PM

i so very thoroughly understand the difficulty with always maintaining more pleasant personality! omg. and the smiles? i LOVE life, but after so many years of this disease, i find myself wanting to live my life so much and having a heck of a time doing it. my arms have been shaking all day. i can type, that's not a problem (it is - but it doesn't make shaking worse), but i can't pick up my youngest child and i can't play ball and i can't... see? i can so easily focus on what i cannot do. so i try to focus on what i can do,and u know what? the list is not long. that includes maintaining friends. a few years ago i had a lot of friends, and believe it or not, i ACTUALLY HAD PEOPLE WANT to be my friend. That takes a lot of energy. Maintaining friendships is so very hard. I have ONE friend that ALWAYS understands my n. I am so very sad right now because she's in Norway with her family looking for a new house because they just sold their's. omg, she's moving. :angry: moderators, we still need a crying icon. (and a boot icon. and a thumbs up. and a heart) not only is she moving but it's over seas. i have another incredibly awesome friend, but she doesn't live here either. i miss the walks, the visits to a cafe, excursions to get a dessert, playing scrabble, hikes, shopping excursions, etc. but the reality is, i can't do these things anymore. i've caught myself being in a bad mood or discussing my health a bit more than normal, and it is a big turn off. i avoid doing this in the "real world" like it's the plague. I don't mind sharing that i have n, but anything more than that seems to be overload for most people.

my parents were accepting of my n, but i've lost every single other family member because of it. actually, it's because of their assinine bs insensivitive discriminating ahole lovelacking aholeness. jealousy. every friggin' one of 'em. it's lonely as he77. and also, same as you, there is no one else to fall on, except i do have my husband that works double duty because of this disease. i am so blessed to have him in my life, and i know that i would be nonexistent if it weren't for him. we have finally worked thru many months of his having a difficult time coping with this.

"I don't have the luxury of being disabled (not that this is a luxury of course)." I used to say this EXACT thing! great minds do think alike! n has attacked me to the point that i am finally admiting that i'm truly disabled. i'm no longer p.o.'d about it. i have pretty much gotten past the apathy stage, and that was hard! it is still a battle everyday to not be like that. i don't always win the battle, but it's okay. it takes so much strength to just be mentally healthy about this whole situation that honestly, sometimes i just am physically not capable of doing it. i've finally accepted (tho not always happy about it) that i'm a *BEEP*ty friend. i cancel times, or have to push back times, etc. i am actually a very good friend if all u want to do is talk and not have to rely on me, but that is a bit antithetical to the term friend, isn't it? "I can't even get that far. I am in pain; I am tired; and my brain isn't firing enough to make idle chit-chat (of which I really don't care about anyway). I can barely function, yet I am supposed to be smiling and happy in life. I might have something to smile about if people would be more understanding." i have same issues. the idle chit chat? well, i've become so embarrassed of myself for not having my brain firing on all one cylinders (that's what is now left!). it's embarrassing to be around other people AND exhausting.

keeping, making friends is a difficult thing to do, and that is a double whammy because n is such an isolating disease.

BUT - THERE IS GOOD NEWS! you have new friends here. you can talk to us in your p.j.s even and we won't even care. you can be late for chats, whatever. no biggie. we understand. no chit chat is idle chit chat. most of us seem to be intelligent people (in my case used to be) that are willing and happy to discuss a plethora of topics- including just listening to you saying that you are in pain. or that u are tired. or that you're feeling absolutely lousy. heck, i may even kick a wall for you. hmm, well, maybe tomorrow. i'm sure i'll have more energy then. BUT I WOULD! at least i'd want to, anyway.

and one last thing: "Okay, now some of you are going to jump to the conclusion...oh, she is depressed. No, I have been cleared by more than one doc. I am not depressed. I am frustrated. I am a good persona and I like me very much. I am just tired of having to be "perfect" or be alone. " yeah, i can sooooooooooooooooooooooooo relate to this, and sister (i think!) u found a soul mate in me. a soul friend. twin. u know what i mean. LOL i am the FRUSTRATION QUEEN. maybe we can help each other not be so damn frustrated with just trying to make it in life. Actually, i think that u will find many others on here that are willing to do that. much love.

#3 Sunshine

Sunshine

    Member

  • Members
  • 8 posts
  • Gender:Female
  • Location:Mile High

Posted 21 July 2009 - 01:49 PM

Wait....let me clarify that I DO NOT focus on what I cannot do. I only did that for the purpose of explaining what everyone else seems to be focused on. I don't focus on how difficult it is to stimulate my smile muscles (of which it actually does take more to do than frown). The people around me focus on this. Most people around me focus on what I don't do that they want me to do to rather than what my strengths are. I bring no attention to it - they do. I simply try to explain why I am different when they raise the question and then they don't care!

#4 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 21 July 2009 - 02:58 PM

Wait....let me clarify that I DO NOT focus on what I cannot do. I only did that for the purpose of explaining what everyone else seems to be focused on. I don't focus on how difficult it is to stimulate my smile muscles (of which it actually does take more to do than frown). The people around me focus on this. Most people around me focus on what I don't do that they want me to do to rather than what my strengths are. I bring no attention to it - they do. I simply try to explain why I am different when they raise the question and then they don't care!


me either usually. i fail miserably at trying to explain what i'm trying to say. i was trying to point out that it would be too easy to do that.

even here i cannot get people to give me benefit of doubt. i'm so sick of this. i thought it was a positive post. showing what my thought processes are is the way that i have come to explain things to people. its messed up, but its what i've been reduced to.

i'm tired of people choosing to see the bad in what i post on here.

CHOOSE TO SEE THE POSITIVE


#5 Sunshine

Sunshine

    Member

  • Members
  • 8 posts
  • Gender:Female
  • Location:Mile High

Posted 21 July 2009 - 03:22 PM

OMG I DO THIS TOO!!! And people hate it. They think I am arguing when I am just trying to state what I am thinking and they may correct me where I am wrong!!!! AWESOME!!!!

I wasn't looking at anything you posted as being bad. I just thought I hadn't been clear... I don't look for the bad in what people say and do. Actually, I tend to look for explanation if someone does something I don't necessarily see as good at first. I try to think that people generally are good at heart and mean well, but I tell you what....this is getting to be difficult in a world that seems to be unable to extend me the same courtesy.

#6 sunrisemoon

sunrisemoon

    Member

  • Members
  • 105 posts
  • Gender:Female
  • Location:Melbourne, AU

Posted 21 July 2009 - 06:02 PM

Just dropping by to say hi, Sunshine. I think we can relate to a lot of what you said.

Sleepless said: i am actually a very good friend if all u want to do is talk and not have to rely on me
Damn, that's so true. It also depends on the time of day. I had to tell my sister to stop calling me late in the evenings, because I'm so tired from trying to be somewhat productive during the day, I don't have the energy to listen or talk back, let alone really care what she has to say.

I do have some good friends, but I tend not to see them very often. They do a lot of social stuff at night and I can't (unless I take my day drugs at night and can sleep the next day). Two understand. The rest say they do, but nothing much of what they do backs that up. I don't mind so much though. I know they can't possibly relate, but it would be nice to not feel like they think I bail or cancel on things just because I can't be bothered going.

I've started telling new people I meet, straight off the bat that this is how I am and why. It weeds out some of the people who will always judge pretty quickly.

#7 Sunshine

Sunshine

    Member

  • Members
  • 8 posts
  • Gender:Female
  • Location:Mile High

Posted 21 July 2009 - 07:19 PM

The rest say they do, but nothing much of what they do backs that up. I don't mind so much though.

I've started telling new people I meet, straight off the bat that this is how I am and why. It weeds out some of the people who will always judge pretty quickly.


I have tried the tell them up front approach most of the time and what I get is a complete interest in hearing about my disorder, a complete certainty that they can see why I have the quirks that I do.....and then a complete lack compassion when a small amount of time goes by and the novel isn't novel anymore. It is at this point they think I should just 'grow up,' 'stop making excuses,' 'deal with it' or figure out a way to be normal.

An aquaintance just posted this on FB, "Always be prepared, always be yourself, and always be honest. That is a good recipe for self respect, self love and self worth."
So, I have this down.....how do I get others to treat me the same?????? I am sooooooo tired of being lonely, and I am becoming too angry with the insensitivity and lack of compassion that most healthy people afford.

#8 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 21 July 2009 - 09:21 PM

OMG I DO THIS TOO!!! And people hate it. They think I am arguing when I am just trying to state what I am thinking and they may correct me where I am wrong!!!! AWESOME!!!!

I wasn't looking at anything you posted as being bad. I just thought I hadn't been clear... I don't look for the bad in what people say and do. Actually, I tend to look for explanation if someone does something I don't necessarily see as good at first. I try to think that people generally are good at heart and mean well, but I tell you what....this is getting to be difficult in a world that seems to be unable to extend me the same courtesy.


You sound so much like me, it's crazy. [twilight zone music] ;)

#9 Mike M

Mike M

    Member

  • Members
  • 379 posts
  • Gender:Male
  • Location:Saint Paul, MN
  • Interests:Ultimate Frisbee, Literature, Film, Music, Narcolepsy, Education

Posted 21 July 2009 - 09:53 PM

So, I have this down.....how do I get others to treat me the same?????? I am sooooooo tired of being lonely, and I am becoming too angry with the insensitivity and lack of compassion that most healthy people afford.


I so wish that I had some brilliant insight for you. Clearly, you are an amazing person. I dearly wish that people were not such jerks. I truly feel blessed, going back to the question in your initial post. I feel like I have many friends (within the PWN community and within the non-PWN world). At the same time, a vast majority of my non-PWN friends truly do not understand my narcolepsy, but they do try. I am also lucky in that I am an extreme extrovert - my desire to be with others often allows me to be more functional in social situations that my narcolepsy should allow. I sincerely hope that if you do move on from Colorado, you will be able to find a supportive community. There are people out there who will treat you decently. They will accept your condition, but not diminsh who you are because of it. Please know that many of us are here for you. Since I have said that to others (particularly another brilliant individual in Colorado about a year ago), I know that cyberinteraction does NOT take the place of direct human contact, but I do hope that it counts for something.

#10 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 21 July 2009 - 10:22 PM

, I know that cyberinteraction does NOT take the place of direct human contact, but I do hope that it counts for something.


it so truly counts for me

i basically have no interaction with others, so this is EVERYTHING for me

#11 Bafflegab

Bafflegab

    Member

  • Members
  • 66 posts
  • Gender:Male
  • Location:Frederick, Maryland

Posted 22 July 2009 - 10:40 AM

I get it. Completely. The question, for me anyway, is not do I have friends, but do I want friends. The answer has always been an emphatic, no. The only person I have ever met who gives me energy is my wife. Virtually every other person I've ever met takes every bit of energy I have. My kids just suck the energy out of me, and I love them. Left to my own devices, I'm completely happy being by myself. It helps that I'm an introvert who likes to read, listen to music (really listen to it, opposed to having it on in the background) and watch films, but I'd much rather be around my dogs than other people (my wife excluded).

Luckily, my wife understands what I go through and lets me be when I need to be alone, and picks me up and carries me when I need to be and when she has the energy (and I reciprocate when I can). I honestly don't know if I'd still be alive without my wife. And, no I'm not depressed, either. I just know how exhausting life is and how much people intensify the fatigue. I like people, too (some, anyway; I have my prejudices).

Another way I'm lucky is that I have a boss who is accommodating (to a certain degree, he won't put up with whining and *BEEP*iness; but he and I share a common professional "been there, done that" background), but amongst my colleagues in the office are some of the three most touchy and easily insulted women (I'd same people, but they all happen to be women) I've ever worked with. I'd actually fear for my job if I wasn't so good at it (and getting better). I also regularly put in much over-time, which my boss appreciates (especially since two of the other three women actually plan the completion of their projects around the end of their work day, which wouldn't be so bad necessarily if we did something other than write proposals for medical and scientific research).

Christopher Todd

#12 Sunshine

Sunshine

    Member

  • Members
  • 8 posts
  • Gender:Female
  • Location:Mile High

Posted 22 July 2009 - 04:18 PM

Another way I'm lucky is that I have a boss who is accommodating (to a certain degree, he won't put up with whining and *BEEP*iness; but he and I share a common professional "been there, done that" background), but amongst my colleagues in the office are some of the three most touchy and easily insulted women (I'd same people, but they all happen to be women) I've ever worked with. I'd actually fear for my job if I wasn't so good at it (and getting better). I also regularly put in much over-time, which my boss appreciates (especially since two of the other three women actually plan the completion of their projects around the end of their work day, which wouldn't be so bad necessarily if we did something other than write proposals for medical and scientific research).

Christopher Todd


Chris - it sounds like you and I have similar jobs. I am a research assistant (just finished my masters and hope to continue on in a couple of years). Fortunately, my experience in the scientific community has been more positive than negative, and the negative ones have been isolated to crappy PIs. CO is replete with people who look for a reason to be offended (PC is a strong topic) so I get that too. I couldn't say "good morning" without worrying I was offending someone. The lab I have now is AWESOME and am very happy with my working situation so far.

However, on that note - I AM an introvert and would be happy with a VERY small crowd of friends. When you aren't married or dating them, one really isn't enough. Your spouse lives with you, so she is there nearly every time you need her, and the situation makes her more accutely aware (I should hope) and flexible. Friends want me to bend to when they have time (if only I could find a "they") and operate on "their" terms.

To all out there....I am an avid user of FB and the social networking places. They do not replace friendship for me. I seek people to do stuff with, have a real conversation with or all the other stuff that requires me to interact with someone who has 46 chromosomes and a pulse.

#13 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 23 July 2009 - 12:34 PM

I used to have a professional career, and I swear, I am convinced that we all must have worked with the same people. It's amazing how many of us pwn's are intelligent enough to excel at what we do, but we seem to be condemned to work with ____________________ type people. You can fill in the blank.

#14 Bafflegab

Bafflegab

    Member

  • Members
  • 66 posts
  • Gender:Male
  • Location:Frederick, Maryland

Posted 25 July 2009 - 10:39 AM

Currently, the team I'm a part of consists of five people, beside myself. The team leader, my boss, is a vice president of the foundation. Two of the other four people won't speak to me. I don't know why, and they won't tell me because they won't speak to me. They won't tell my boss, either. They have told his secretary, but she won't tell me why because she's "... not involved and [I] need to ask them." My boss isn't going to push it, because he doesn't care as long as it doesn't affect the quality of the product. I agree. And, if anything, I'd rather they not talk to me. It frees me up from having to be sociable and decreases the chances that I'll make some sort of egregious social faux pas.

The other night, my wife told me as gently and honestly as she could that I often miss those signals, and as a result am often misunderstood. Of course, I think that people are overly sensitive and dislike introspection and hate having a truth pointed out if it makes them look bad. People often are more than happy to take credit for work they haven't done or have played only a minor part, but they refuse to take the blame for anything. I have the opposite problem (not because I'm PWN, but because I was raised by a liberal academic and an honorable cowboy living in the wrong century). I tend to be self-deprecating and give credit where it may not be fully due and squarely take the blame when I've done something wrong, and because I do I don't like to be thrown under the bus and will vigorously defend myself when I have to.

It's gotten me in trouble before, and it's gotten me in trouble here. This time though, I'm not willing to let my pride lead my fork. For probably the first time, I'm swallowing my pride and am willing to do whatever it takes to make everyone like me. I'm dressing the part, I'm kissing the asses of the people who want their ass kissed, I'm letting sub-standard work through (this is the hardest), and I'm engaging in small-talk, which sucks energy out of me at an incredibly fast rate.

But, as my wife says, it's the war I want to win not the battle.

#15 sleepless sleeper

sleepless sleeper

    Member

  • Members
  • 873 posts
  • Gender:Not Telling

Posted 25 July 2009 - 03:42 PM

I swear that I thought that I was looking into an emotional mirror when I read your post.

I've had extremely similar experiences. At one point in my life I was an amazing mental machine. Granted, I did suffer the effects of n, and they were great, BUT somehow I worked around them. Things weren't really this bad until my pregnancies, which were late in life. I had a professional career that I was respected in. In the world of tax and law, that says a lot. As my n progressed, I had to decrease the stress and especially decrease the work hours. My work environments sound similar to yours, but I took the same attitude that you have taken. As long as I performed well and my salary providers were happy, then screw the rest of the lot. Well, for the most part. Sometimes it got to me, but not so bad, and it was only sometimes. I usually would go home late at night after work and fall on my bed with suit and heels still on.

Be careful about bending over too much, though. If it is not affecting your work environment, then use personality alteration with caution. I did not do this at work, but I did it with my family. You know, I'll msg you this. It's a bit personal. But the gist for everyone else is: when you try to be what you are not, you will become confused. That is good for no one - especially you.

#16 Marcianna

Marcianna

    Member

  • Members
  • 817 posts
  • Gender:Female
  • Location:Sleep State
  • Interests:Compassion

Posted 26 July 2009 - 05:55 AM

I also can understand the not having any friends at all statement. And while I love message boards and chat's I've found a much better more personal way to have "friends".

I've started a Sleep Disorder Support Group in Second Life which is a Virtual World. You get to create an avatar that can actually reflect who you are or who you'd like to be in a "perfect world". With a $15.00 headset you can actually talk to people and hear their voice which to me often takes the misunderstanding away from the typed words. We hear in our heads what we are typing and how we want it to sound, but when it reaches the other end it depends on who's reading it and how their day has gone, blah, blah, blah how they hear the words they are reading. I found chat rooms to be very helpful when I was first diagnosed and I still do, but I absolutely LOVE Second Life and I look at the things that are accomplished their by other big organizations and I'm thrilled to be part of it.

My group is called Slumber Society. It is free to join and Second Life is free to download and if you've never done anything like this before we have an awesome Orientation Area that will help you learn. And I have boxes of Free Stuff I can give you, clothes, hair, etc. You won't really get what I'm talking about until you come check it out, but if you'd like to see, give me a shout.

You can contact me here, or on Skype at sleepy_cowgrl, or by e-mail at sleepycowgrl@comcast.com, or by cell at 360-901-0571. I'm happy to be your friends, and you don't have to travel to see me, or buy lunch out or anything. That's what's so awesome, I now have friends in the UK, Ireland, Salt Lake City, Calgary, Alberta Canada. You name it. When I log on I can always find someone to talk to. I've been a big part of Relay for Life in Second Life this year, which is a Fund Raiser for the American Cancer Society. This was a post from Faydriana Foley who is the person behind Relay for Life in real life as well as in Second Life. "The GRAND TOTAL as of 9:00 AM SLT is: $270,388.00 USD
NOW THAT IS SOUL SHATTERING!

Talk about the power of the internet! I look forward to seeing some of my NN friends on Second Life soon. Now that Relay for Life is behind me for this year, I'd like to get a schedule for meetings and they can be anytime that works for anyone. We just need to get a schedule. Dogdreams from Narcolepsy Network Forums is also one of my Officers, and has offered to help facilitate meetings and we have an awesome place to hold them. So come on and make new friends, but you can still keep the old. :-)



All though Cowgrls group is VERY real and there are many many many other Organizations that are real in Second life I feel it important to caution you, Second life is a "virtual reality" where anyone can go to do anything they please. Some people live entirely fictional lives there or go to participate in role play communities. Second Life just like anywhere on the internet can seem very personal, but please use caution. There is no one there that you ACTUALLY KNOW. (unless of course you do but you know what I mean...) Cowgrl has done very well there and we are all proud of her.

#17 Mee

Mee

    Member

  • Administrators
  • 44 posts
  • Gender:Female
  • Location:NYC
  • Interests:Playing pool, Flying Trapeze and Aerial Silks, and Dogs.

Posted 21 December 2009 - 12:19 AM

Sunshine,

I feel your frustrations. I've been through times of my life where I had to retreat from my friends because I just didn't have the energy. And people equate shiny, happy faces = good friendships. Its hard to put on a smile when you can barely get out of bed. I get that. However, I also get that I have to be there for my friends as they have for me. I have taken half-days from work just so that I can get some real sleep (not just a nap) so that I can go out late for a friend's party. There are times where I would take naps in a bathroom stall (forehead on the door/wall) so that I wouldn't ruin my bridesmaid hair & make-up. I love my friends. I was blessed with a really good group of friends who were there for me when I was diagnosed and stayed with me since. I kept social by hosting a lot of our social activities (ie movies at my place) so that I can roll into bed if I fall asleep and my friends can show themselves out on their own. But those that they know me will know that I won't be cheery and that its best to just leave me alone. If you didn't actively talk/hang-out with your friends for months, do they react negatively to you when you reach-out or do they act like time never passed? Sometimes you have to shop for the right friends. There are people out there who will understand, get-it, enjoy your company (sans 24/7 smiles) and love you all the same.

You obviously a person with a lot to give and a very big heart. If people can't see pass the surface then I feel sorry for them. They will never see the true depths of a person's soul.

Best wishes,
Mee

P.S. Tell us how you're doing!




#18 GaryReimer

GaryReimer

    Member

  • Members
  • 6 posts
  • Gender:Male
  • Location:Potsdam NY
  • Interests:Drawing, Mechanical anything, Electricity and Electronics, Aerospace, Computers, Psycho-Neuro-Immunology, Pizza (I am forever an addict), Architecture, Engineering, and listening to other people talk about their interests.

Posted 07 January 2010 - 02:25 PM

My theory on this (yes theory), keep getting better at defining what a friend actually means to you, what you need, and what you can share in return.

In regards to pain... I finally figured out what the pain actually is, we are feeling gravity. Exercise, sit at the edge of the bed or chair (try not to fall) hold your head with your nose facing directly towards the ground, then slowly rotate your head clockwise and counter clockwise, you will feel the pull of gravity. Its caused by lack of adequate muscle recruitment, and is partial sleep paralysis.

Smiling... smiling is only for laughing at someone or something, not internal happiness. I am guessing here (my situation), just as you were relaxed and accepting with who you were at that moment, someone came in with the "you ought to smile more" comment. (They said it so they could steal your happiness... notice how they were smiling when they said it but you weren't).

"Inviting people to do stuff" yes if you like being talked down to or being less then, its pretty easy to do that. My mother uses comments like "you're supposed to make me happy" when ever she talks to me. (if ya'll have friends and family that are not like this... I am deeply gratified you have them in your life).

Future reference... make a list of the challenges you have faced, the things you have accomplished in spite of those challenges. Then ask the "you need to smile more" putz, to be your accountability partner, (a task that requires self discipline, integrity, empathy, and listening abilities) and watch them squirm. Its not about being perfect, its about finding people who can accept you for who you are and where you are, and having gone through something bad in their own life is no guarantee they can be there for another.

"Those who matter don't mind, those who mind don't matter." Keep frowning... you're more alive and awake then them anyway.

Take the feeling of hope that you feel when talking to someone that they will accept you, and feel that for yourself, love who you are, be who you are, and who ever doesn't have the ability to love you when you are in need, does not deserve the same kindness.

But much of the difficulties is lack of adequate medication to allow for mental functioning while you are alone in order to sort out your emotions BEFORE you start talking to someone. Something my doctors don't quite get, the "make me feel better or I won't treat you" mentality. Which is in one sense a mirror of your own internal state, but something you will not have control over UNTIL you get proper treatment. MORE METH!!! :D

Here is a phrase for you (thanks to a nurse that works with stroke patients) "Expressive Dysphasia". Good luck getting the doctor to actually accept it though if they didn't think of it first.

-Gary

#19 GaryReimer

GaryReimer

    Member

  • Members
  • 6 posts
  • Gender:Male
  • Location:Potsdam NY
  • Interests:Drawing, Mechanical anything, Electricity and Electronics, Aerospace, Computers, Psycho-Neuro-Immunology, Pizza (I am forever an addict), Architecture, Engineering, and listening to other people talk about their interests.

Posted 07 January 2010 - 03:22 PM

OMG I DO THIS TOO!!! And people hate it. They think I am arguing when I am just trying to state what I am thinking and they may correct me where I am wrong!!!! AWESOME!!!!

I wasn't looking at anything you posted as being bad. I just thought I hadn't been clear... I don't look for the bad in what people say and do. Actually, I tend to look for explanation if someone does something I don't necessarily see as good at first. I try to think that people generally are good at heart and mean well, but I tell you what....this is getting to be difficult in a world that seems to be unable to extend me the same courtesy.


Yup same here!

"They think I am arguing when I am just trying to state what I am thinking and they may correct me where I am wrong!!!! AWESOME!!!!"

This one is a pain in the behind. I think it comes from being conscious of of who we are, and how we interact, and how we think, and our emotions; then all in relation to each other internally. Getting a handle on projection, both not doing it without certainty of being right, or being offended by it when it happens without intent of malice... especially when sleep deprived SUCKS!

And the people to try to correct or fix, (have it called somatotizing etc) are trying to group you into something they can understand and feel better then, and since they don't understand themselves, their mind gets uncomfortable at not understanding, groups you, applies the uncomfortable feeling to you, then "walks away". Controlling the mind is when you state your perspective, or thinking so as to learn or exchange ways of thinking.

I got kicked out of two Narcolepsy forums on Yahoo for "getting too personal" and "too intense" especially in regards to cataplexy triggers, and endeavoring to both understand and be understood.

I think the problem comes down to confusing "diagnosis, empathy, support, person, problem, mind, emotions, being and doing, giving, and pride". And doctors thinking their opinion is more objective and right then the test which contradict them, especially blood tests and MRIs... thats always interesting to watch the denial engines start turning to protect self rather then treat the patient. I am currently on my 7th doctor right now due to this.

"Seeing the good in people" I stopped looking for that, I am just looking for people who can do their jobs without having a panic attack when you ask them a difficult question... I am having more luck with this idea actually, protecting their job and status within it seems to be the best motivator. (with the addition of the word "sue" at certain key moments rather then resorting to the phrase "You are a F__ing Moron").

Thoughts on disability... :-) Not being able to get the tests done properly to verify either way, or treat the condition... its great, I got my first disability denial within 4 months of applying, when I told the case worker, "that test won't tell you anything either way" (a psychological evaluation). Not to mention I had one done before, told the guy I fell asleep during the test, and he said "likely a question of motivation" is written in after it (8 years ago with no sleep study) and I asked the case worker... "Did my doctor send you the sleep study?" .*uneasy pause and stammer*... "uh yes its here"... I said "great, can you ensure I get the testing done that is needed to ensure proper treatment based on my symptoms?"... "uh, let me get back to you on that one." I had the denial letter 3 days later. :-P

I also cornered two lawyers in less then 5 minutes which was fun... reactive intelligence + fear of abandonment + cold turkey coffee withdrawl + lazy doctor + increased dosage of Provigil = bad day for the lawyers... and I was pleasant (as a pitbull) ;-D.

-Gary

#20 Day Dream Believer

Day Dream Believer

    Member

  • Members
  • 34 posts
  • Gender:Female
  • Interests:Music (C Guitar, Flute, choral)
    Poetry
    Staying alert
    Dreaming
    Movies

Posted 10 January 2010 - 12:02 AM

How do any of you narcoleptics have friends at all? I have just one right now...just one. She is the only one that can accept my limitations and not condemn me to loneliness for them. Bless her. However, recently I was told that I should "be more pleasant" and "smile," and that because I am not a "shiny, happy, people" I am not worthy of the friendship of people. It doesn't seem enough to explain to them that I am grumpy because I have been in a constant state of discomfort for the last 12 years. They can't imagine that with a loss of sleep comes intensity to the pain associated with arthritis and lack of muscular rest. It isn't enough to tell them that the postural muscles in my face sag, thus I "look" upset (even when I am not), but regardless, it takes a great deal more effort/energy to smile than it does for them.....and energy is something I lack. Geesh, just saying "hello" can be a chore sometimes.

Now, let's leave aside that physical pain and get to the real reason I am grumpy MOST of the time. I don't have the luxury of being disabled (not that this is a luxury of course). What I am saying is that I do not have friends or family to fall back on AT ALL. I do not have their support emotionally or financially. The only person I have to get me through the good times AND the bad is me. Unless I want to sleep in the streets or become a ward of the state (not sure they would take me), I have to get up, go to school/work and pay my bills. With that work, comes the requirement to think efficiently....something we all know that an unrested brain does NOT want to do. Yet, I must, and I must within an environment of highly intelligent people who expect me to be the same. I must because blue-collar jobs, or at least the ones that do not require much thought, are either too physically demanding on my unrested body OR, they don't pay the bills. I save up every ounce of what I have in me just for my job. When the work-day is over, nothing is left and I am GRUMPY.

Don't think that I am mean...no, I am not mean to people. I am just grumpy. I hurt, I am tired and I often feel like even the little things are difficult to do. Forgive me if I don't walk around with a smile on my face or the belief that most moments of my life are wonderful. Frankly, they aren't.

It doesn't seem to matter that I have faced not just this disorder, but a life of battles with a poor, abusive family....yet I still managed to eke out 3 bachelors degrees and now a masters. What I am made of, and the perseverance, and my strong will to survive are not important to people in their "friends." My loyalty, my love and my acceptance of all of their quirks and faults is not enough. My absolute desire to actually KNOW them is neither here nor there. The only thing that seems to matter is that I am a shiny, happy people. WTF? Then, they expect me to not be angry about this?

I see on here people questioning finding the time and energy to "maintain" friendships, such as making time and inviting them to do stuff. I can't even get that far. I am in pain; I am tired; and my brain isn't firing enough to make idle chit-chat (of which I really don't care about anyway). I can barely function, yet I am supposed to be smiling and happy in life. I might have something to smile about if people would be more understanding.

Okay, now some of you are going to jump to the conclusion...oh, she is depressed. No, I have been cleared by more than one doc. I am not depressed. I am frustrated. I am a good persona and I like me very much. I am just tired of having to be "perfect" or be alone.

So, I ask again....how do you have friends at all?

It is really hard some days to do what i need to do to make an effort to build friendships. I had a good friend but she moved. I have some good class mates and I just recently told them about my N. They are very kind. But who wants to wait for someone to have the energy to do stuff. It takes all i have to work and go to school and there is nothing left. I don't know how i managed to have a son and take of him. He is married now and a grown man but as i look back i know i did a lot of sleeping at that time i did not know i had N. I have kind of gone into a shell cause it is hard to be the shinny smiley bubbly person when i am fighting to stay alert. I am glad i found this forum and all you good people out there like me who just really want to be able to feel accepted.