I can very much relate to being just plain tired all the time. Even with these great meds I have started I still wonder if they are really working. I havn't been on them long though. I often wonder for what reasons it is that I don't have friends outside of work that is. I am a very outgoing person. I just don't have the energy to persue an outing with others. I have a family and it is hard to find people who are "like us" and like things that we like. I get a bit paraniod when other moms don't engage in conversation at ball games for my son. I wonder if it's me who is appearing stand-off-ish or are they? Maybe I AM avoiding social things because I am always tired. Oh well, I keep working on creating situations for socializing to happen. I do feel for your situation, but don't stop trying!
HappyHappy

I have a few friends that have stuck by me, and they are awesome. They are the ones who suggest we rent a movie, and then don't yell at me if I miss the whole thing. I havne't been on a date for 8 YEARS!! Honestly, I am just so tired, that I can't have one more person in my life that needs a single thing from me!! I know how you feel, I have been lonely too. That is part of the reason that I signed on here!! Good luck.

Before I was DX I would spend a better part of the day with slurred speech and the inability to move properly. My best friend was there for me and would take me grocery shopping and just hang out and watch movies with me. As much as it sucked being that bad it was so great to realize how close we really are. I will always be there for her no matter when, where or how:)

I can totally relate to your situation. I lost any good friends I had years ago when my N got much worse. Which made me wonder just how good a friends they actually were in the first place.

The tiredness and fatigue do absolutely get in the way of friendship. It's very difficult to find people that truly understand N and how difficult it can be to live with. It is very lonely, it sucks.

Are there any local groups you can join or classes you can take? Hang in there, don't give up. Andrew

I've been thinking about this. Lonliness is a common thread with narcoleptics. The perfect solution is for an enterprising person to set up some kind of community for people with N. It would be ideal, everyone would understand each others problems, you could help each other out, watch each other backs, you get the idea. Even down to employment and childcare, I'm sure there would be ways that individual skills could be put to use in commercially viable ways.

OK back to reality, no harm in dreaming though. I'm very good at that :-)

Andrew

I used to have friends who wanted to go to the mall all the time, or run somewhere everyday. I just don't have the energy for that, so it was hard to move in a different direction. But you can do it. You don't have to let your old friends go completely, but always be on the lookout for someone else. There is no such thing as too many friends.

I used to feel very isolated, but now that the kids are doing school functions I have occasions to meet other moms with kids. They don't always become fast friends but sometimes things click.

The school has a cubscout group and they have a couple of annual camp-outs. I met most of my good friends through that.

The school has a mom's getaway weekend once a year without the hubbies or kids. All the moms in the school are invited but we usually only have about 12-15. We play games and sit up all night talking. It is like a slumber party I pay for the next day. We have done it for years and have many repeat moms. They all know I have to have a nap and if I don't get it... I will be sleeping through supper. They are great about it and plan their activities so I don't miss alot while they are waiting for me. They usually go on a hike or something. We also have a getaway dinner at a local restaurant once a month, also open to all the moms and not always the same people. It helps me keep in touch without feeling like we have to get on the phone every day when we don't really have time, or that we don't have to try and do everything together.

Having said all that, I don't feel the need to be social as much now as I did when I was 30, so that may have something to do with it to.

Alot of people are intimidated in crowds or busy yelling for various reasons at ballgames so if you have an occasion to go to something a little more intimate, try to go.

oh i'm kind of relieved, but at same time sad for all of us, that this is down to N, i don't have close friends for same reason, i'm too tired to maintain friend/relationships, and some friends in past have told me i'm unpredictable, sometimes way upbeat, other times way down, but never steady mood in the middle, so they don't know how they're going to find me from one day to the next, thinking about it, i would probably find that tiring if it were a friend of mine, but over the years it has led to loneliness, paranoia, wondering whats wrong with me, as i do consider myself a good friend to others, willing to help or listen as much as i can, but i've found those same friends are not as supportive to me when i've needed it (read - that goes for family too!). i've always been friendly, reliable, as sociable as possible, but have never had what i would consider a strong supportive friendship.
Andrew, what you suggest about a community - this group is the nearest we can get to it, and all-in-all i think it's a pretty good one, we're there for each other for moral support and at times most convenient, we don't have to synchronise meeting times (i'm still up at 4am cos timeclock shot to bits at moment, who else can i chat to at this time of morning), ok maybe there's no physical help because we're such a rare breed we're spread out too far, but think about it, with N even if we only lived up the road how often would we have the energy to be popping round for coffee, helping each other with shopping, gardening and stuff? i think this site is a fantastic way of supporting each other, and reach out to a lot more people than we would in a local community.
take care, each and every one of you, remember we're only a keyboard away from each other xxx

I consider this my support group. We can all post when we are awake, if someone falls asleep while you are talking, they haven't missed anything you said. Smile... The best part is that no one has to clean their house in order to have friends over. The hard part is when someone needs a hug for 'real'.

When it comes to our exhaustion and being around our friends,does everyone feel paranoid and eventually the friendship ends?

I can also relate to people telling me they don't know which one of me their going to get. The energetic one, the somber one. I really considered myself to the a paranoid scitzo and was fine with if i just knew what was wrong with me.

Yes for sure, I relate to that, there was a time there before my dx where i wondered if i had manic depression (bipolar)

I know it's hard to have friends that 'get it'. I have one, and that's about it. Look at it this way though: I'm a 34 y.o. man, not diagnosed until I was 29, unable to afford treatment until I was 32. My symptoms started at age 23, so when everyone else was going on dates, getting married, having kids, I could do none of it, I couldn't even hold down a job. So, at 34, and college educated, I can barely get a minimum wage job because of my work history, can't afford an apartment of my own, live with my parents, and basically have zero life. So yeah, loneliness is part of the narc package, but then, you're here right? So you do know how to make friends.

Remember that a friend has to understand your condition first, and few non narcs can. Try and explain to your friends what it means to have narc. If they're your friend, they'll try and accommodate more of the sedate activities we're sometimes limited to. You might want to try some of those types of pastimes as well...book clubs, renting movies, take away and t.v., stuff you can do without putting yourself or them in danger...hope this helps.

Remember this: you aren't alone, and lots of us know exactly what it feels like.