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Shambo

Friends.....

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How does everyone else keep good relationships with their friends?

It's a struggle for me to stay on top of all of those things needed for a good relationship. The effort of making plans, following through etc. I seem to only be able to make the time and find the energy for my boyfriend but beyond that it seems impossible.

It seems like we all somehow find a way for our partners , children, and then family, but beyond that how do you do it?

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Shambo,

I am new to my diagnosis of N, but not new to disabling illnesses (Ankylosing Spondylitis, same family of illnesses as Lupus and RA) or the symptoms of N. =) The land of disabling illnesses has been mine for at least 7 years at a consistent level, prior to that my symptoms were more sporadic, so the need to manage them didn't really exist, they were just weird things that happened.

I am a married mom of 2 boys. My hubby and I have been together for 15+ years, so he has been here for it all. One of my sons also has Ankylosing Spondylitis, so we have had to approach relationships at the adult and childhood level.

I have found that most people are just ignorant, but have good intentions. From this I mean that they still love you, want to be with you, but just cannot truly understand and are not sure how to be a part of your life. For this group of people, which for my family is close friends and family, keeping them in the loop on what is going on and when/how to interact with you is the key. If they do not feel pressure to "say something" or are worried when they can and cannot call/stop by, etc, let them know what works for you and what doesn't and that you really DO need them, including what you need (ie, just someone to be listener, someone to be your drill sargeant keeping you active, whatever fits your life). When things change, let them know that as well. Also, make sure they know how much they mean to you and that if you seem to drop off of the face of the earth at times, it is okay for them to remind you (if it is that is) to keep living and/or that you will be back in touch, you just have to have down time. For me, specifically, a lot of how to communicate w/others came from my husband and I trying to figure out how to communcate with each other and to understand that we BOTH play a role in the illness, they are just different, and to me, that is the same for all true friends and close family.

Those not in my "most people" category seem to fall into the category of "having a disability will really let you know who your TRUE friends are". This was a tough pill for me personally. I had a friend for many years that was great fun to hang out with and such, but over time, it was more and more obvious that we were not true friends. It wasn't a matter of this person just not understanding or me wanting too much, it was just that they really couldn't have a friendship with someone that had any underlying complications. Accepting that some friendships just run their course and are over was tough, but it is true and once you are battling your one health, you truly have to let go of any other relationships that are unhealthy...in the end they are unhealthy for both of you.

What I have listed is how we encourage our 9 year old son to approach his friendships, teachers, etc. We are upfront about the illness, limitations, etc, but we also make sure we focus on positive things as well. He has a core group of friends that really "get it" and he has many school friends that are fun to hang out with, but he knows who is really his buddy and who is not. At his age, we also try to make sure he stays on top of his end of being a friend, not just relying on them.

I also make lists of things like "call Jane" and try to plan things in advance, including reminders of my plans, to push myself to keep up with people. Sometimes things have to get cancelled or get off track, but with a schedule, I am able to at least remember what to do in advance.

All in all, it isn't easy, but it is possible I believe. I do speak from someone who is already married and such, so I am sure you will get feedback from others who are single and such for other ideas.

PS--I am also a pretty social person, so it was important to me to figure out how to still be alive and w/those I love and take care my health. Most days the delicate balance works, on others well, those days are gone before you know it and everyday is a new one! ;)

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Thank you sleepylama.

I am definitely lucky. I have about 6 close friends (not from the same circles) who are always there. They always invite me, even though I almost always say no. I can go months and months without speaking to them but when we do it's like no time has passed. They never have an issue with it. They never give me a hard time if I (often) have to cancel last minute. But, we don't spend enough time together. I probably see each of them only a few times a year.

I have found out about the 'others' and how true of friends they are.

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I have about 6 close friends (not from the same circles) who are always there. They always invite me, even though I almost always say no. I can go months and months without speaking to them but when we do it's like no time has passed. They never have an issue with it. They never give me a hard time if I (often) have to cancel last minute. But, we don't spend enough time together. I probably see each of them only a few times a year.

I can totally relate! Maybe we have the same 6 friends ?!!!! Memorial Day is coming soon and we're working on getting our yard ready for a picnic we have every year. It seems that it's the only weekend all year that all of our friends can gather at the same time. Rain or shine they never disappoint us and I suppose if I took a picture of the whole gang we'd certainly resemble the Adam's Family! Honestly I don't care what they look like because they are wonderful "true" friends who really care!

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are you kidding? even people on here don't want to be my friend. this disease? is that what it is? i don't know. the times that i didn't have sleep problems are the times that i didn't have friend problems.

this is the place that i notice it the most.

but i'm me. i hate life. i hate n. wtf ever. i can't keep up with my kids. my marriage? it sux. friends? energy that should be spent on kids. my whole life is controlled by N. I can't stay coherent in discussions with people if i'm on meds, but without them, I'm sleep deprived and insane. damned if i do. damned if i don't.

if it weren't for my kids... geez, but if i didn't have this disease i would be a better person. too much energy to have friends. isolating and -

sleep deprivation is getting too strong. starting meds again soon. It's been a month and a half? two? since i stopped taking them, but it's too much. I'll come back and answer again when my brain is sane. hopefully. i'll try my damndest to be coherent when i do.

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just got a msg from someone pointing out what i said - thanks for that. i didn't realize what i was saying. no meds is great for not having ms symptoms, but it is not great for being sane. with meds i am so zoned out that i really just don't care about anything. without meds i am freaking insane and i admit it. i am lost in my mind. yesterday i talked to my sleep doc and told him that i decided to take myself off meds to see if ms symptoms would go away, which they did, and he is sending me new scripts in the mail. i dont think that he could write them fast enough. more of the same, but lower doses because nothing else works. i am a freak anyway, but does that mean that i'm freaky?

ssssssssssuperfreaky

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omg - friends.

ha.

on facebook there is this guy that doesn't have n that i'm friends with. uh oh. he made the mistake of discussing dreams, etc.

ha.

yeah, i scared him away.

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omg - friends.

ha.

on facebook there is this guy that doesn't have n that i'm friends with. uh oh. he made the mistake of discussing dreams, etc.

ha.

yeah, i scared him away.

hahaha yea our dreams will do that to people!

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hi. just been reading this and just had to have my say aswell. i only have 2 friends and their families. i figured out a long time ago that people come and people go. the friends i have now are my best friends tho.they know about my N and C. if they dont hear from me for more than a day they check up on me to make sure i havent fell asleep in the bath and drowned or fell asleep while cooking and burnt the house down. on a night out they make sure im never left alone during the few hours im in my own world. i think i go to that place in my head for 3 to 4 hours on a night out when i just know i cant fall asleep and just trying to stay awake makes it worse bt i always seem to get through and wake up when its time to go home!! i love these friends like they are family. the rest, well if they cant deal with this weird thing i have wrong with me i just dont make the effort back but that doesnt mean they arent still my friends. they are just people i know bt dont see so often or speak to. im single and meet men out all the time but they dont listen when i try telling the im nt drunk i have a sleeping disorder!!! so non of them get to be my friend but i see it as their loss. i am a nice person but i have the choice of who i talk to if some one i meet cant listen and take it in i have a disability the first time they are told then i dont have to talk to them again. simple as that. as long as my few friends are around im happy with that because i know they are always gonna be there and not complain at me sleeping or dropping things because of the cataplexy etc. as for the weird dreams, well my real friends just thing im nuts when i tell them bt we just have a laugh about it. i often have to ask my best friend if i was dreaming of if its real she keeps me right like that.i just take my N and C as part of who i am and i wouldnt change who i am for anyone or anything in the world.

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hahaha yea our dreams will do that to people!

not just our dreams..our lives scare people away

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not just our dreams..our lives scare people away

If my life scares someone away, then GOOD! I'm probably better off without them in it. :)

My friends are great. They've been with me since before my N diagnosis, so they've seen the bad, the really bad, and the awful days, and now I'm doing better so they can see my good days. It's always difficult to try to communicate what you're going through to someone else, when they just can't relate, because they don't have N. My friends that I've kept through this all are wonderful to me, and they wanted to understand as best they could about N. That desire to learn more about it really showed me who cared tons about me. I'm lucky to have them in my life.

It is still difficult though. My being late bothers some, but they do know I'm not trying to be late all the time. They also don't always understand why I can't go out partying 2 nights in a row. If I could... trust me, I would! :) The friends I have right now have really just learned along with me as I've been learning more about N.

My very favorite friends that actually "get it" and totally understand if I go MIA are you guys! All of you have touched my life in a wonderful way on here. :) Thank you all!

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My being late bothers some,

That is a-okey dokey. I began replying to this one statement of yours about an hour ago.

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lately i've been making more of an effort to make plans with people. sounds dumb, but even just making friend dates for things like grocery shopping or going to the mall for something or a movie helps. not the most fun stuff to do, but still time to hang together. and i try and write it down, like with my work hours.not that it's work, but to remind myself of a commitment... so i don't bail out like i used to do all to often.

So this is where u'v been? Ah HA! You should try giving your dear old NN friend a call (or msg) sometime. You were here a LOT and then GONE. I was worried that your N dreams gobbled you up. I was trying to set up conference hallucinations, but it seems that your dream peeps and my dream peeps had continuous scheduling conflicts. I hate when they do that.

GLAD TO C U AGAIN. Dammit. I don't like missing people. NN does NOT accept MIAs. Well, I guess it's ok this time. You had good reason. Friends, family... yeah, ok.

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im an actor, and so when i meet assholes who are ignorant and wana give me a hard time cuz of my condition, i go into acting mode and act like i am the greatest person ever, act like theres nothign wrong with me and that nothign can come between me and what i want etc etc

that usually helps :P and about making an effort, i make an effort with upto 10 people at any one time. people outside that 10 get pissed off at me, but if i dont care, then they cant get pissed of for long lol

also, i love being with my friends...id go crazy without em, but if they want my company so much, then they have to put up with my sleep just as much

you either accept me and facilitate for my naps, or you *BEEP* off - its as simple as that :) i will not be normal, so if u want that, go find a new friend - im gonna be rich and famous one day and then all these people will regret it hehe

one thing that does piss me off though is when people get pissed off at you becuase they say u make no effort, and then when ur there, they get pissed off at you for being sleepy and tell you that you shouldve stayed home.

people like that get discarded pretty soon ;)

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