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#1 drago

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Posted 30 March 2009 - 10:36 PM

All right, here we go.

I am presently in an environment where I work with a small, close-knit group of people. Since I work in the theatre, I do things in the office and physical things, including helping the technical directors with minor projects (like painting and puttying). I also am a backstage hand, which often requires me to be ON MY TOES...

The small, close-knit group of people with whom I work also are the base of all my friends in this area. Not having tons of free time (and spending most of that free time sleeping) spells me not having tons of friends from outside work. Those that exist are from college/high school that I keep in touch with and see maybe every week or so.

The trouble is... I don't think they 'get' the whole narcolepsy thing. On top of that, there are some other conflicts (such as head rushes that I've been getting) that are not specifically diagnosed as anything, but are either related to blood pressure, blood sugar, or narcolepsy/the meds I take for it... I just feel really frustrated.

Also... I feel like when I tell people things they don't believe me. When I am falling asleep, please don't shake me awake! It only serves to make me nauseous! And, seriously, if a sleep attack could be abated by being woken up, it would be an embarrassing social problem, not a neurological disorder.

I haven't had problems during the day outside of head rushes and sometimes EDS will sink in while I'm trying to work... but when I hang out with people at night, especially if we're drinking, everyone gets REALLY UPSET if I fall asleep. My falling asleep has nothing to do with the beer!!! It has to do with the Aderall wearing off finally... :-\

Yes, I do tell people about the issues (don't shake me awake, I can't do that right now, etc.) ONLY WHEN I am currently in a sleep attack/having whatever problem... but I don't see it as helpful to state it any other time, you know? I'm just frustrated with people NOT LISTENING TO ME about anything - especially if they're your designated driver at night (not necessarily for drinking, I just don't drive at night now)...

...so, any advice?
drago

#2 jenji

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Posted 31 March 2009 - 12:32 AM

QUOTE (drago @ Mar 30 2009, 11:36 PM) <{POST_SNAPBACK}>
...so, any advice?
drago


Yes, it's simple, although not entirely easy to accept.

The majority of people in this world do not listen. They just don't. For a myriad of reasons, which I will not get into, but still, most people do not listen well. A good, attentive listener is a rarity.

People don't get a lot of things about others b/c frankly, it's not about them. It doesn't mean they're not friendly or fun; it doesn't mean that you shouldn't be friends with them (although some could use the boot). It merely means you're wasting your energy getting individuals to understand your predicament. A good, compassionate listener is a person who will clearly be understanding and helpful from the get go. You will not have to teach them how to be supportive. I can be (and have been) entirely supportive. compassionate and a good listener with friends who may have had cancer or MS or Crohn's without experiencing the condition myself b/c it's not about me. It's about them.

I'm just saying, you're going to drive yourself into the ground trying to get people to understand what you're going through, so I would recommend that you rely on those you can truly trust, those you have connected with and who do get it and keep quiet about your condition with anyone else. Waiting for understanding from those who are incapable only serves to let you down and leave you frustrated. Some people just don't get it and don't feel too bad, b/c in my experience those types of individuals do not get anyone else's challenges or conditions either, I'm sure it's nothing personal. Bc as I have said: it's not about them.

good luck.
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#3 sleepless sleeper

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Posted 31 March 2009 - 12:27 PM

Hey! Did you read my post about family and them not getting the whole N thing? If people that you care about don't want to understand, then they are not going to, BUT maybe your friends need a little more of a nudge. Most likely there are at least a couple of them that will be understanding if they had a little more prodding.

Overall, people are good and they do want to be there for you. I know a work environment is difficult for PWNs, and if things don't get much better for you, hopefully ranting here will be of help. It is for me. I will be here for you, just the same as everyone else here.

Much love and hugs for you, sweets! biggrin.gif

#4 sleepless sleeper

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Posted 31 March 2009 - 12:29 PM

Then again, I just read Jenji's answer. The other side of me agrees: The majority of people in this world do not listen. Give them another chance first, though. We all like 2nd chances, so give them another go.

#5 Marcianna

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Posted 31 March 2009 - 01:42 PM

I agree on the whole second chance thing but if things dont pick up and get better with your friend, then you really should go red Sleepless's other post. I posted my thought for her there and the same would really apply to you if they still insist on not pulling thier heads out of there butt. Having worked in the theatre and music industry before I know there is no bigger clique of "me me me " type of people you know the ones I am talking about....lol.... They will learn or get the boot right!?!?

#6 sleepless sleeper

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Posted 31 March 2009 - 08:36 PM

If it comes to that, Kick da beyotches to da curb. I'll help.

We need a boot icon on here!

#7 drago

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Posted 31 March 2009 - 09:01 PM

Haha...

Well, the trouble with people not listening isn't so much them not understanding - I can deal with that. The problem is that people try to shake me awake and try to do things to "help" me, or they'll see me close my eyes for a few minutes and assume I'm sleeping, when I'm just waiting for a head rush to pass. Instead of communicating with me, they just jump right in.

This is especially in a problem at work, when I need to be able to take moments (w/headrushes and such) without being accused of falling asleep... which I haven't done!!! Ugh.

So, that's the problem - it's not just them listening, it's how they're acting...

drago

#8 jenji

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Posted 01 April 2009 - 12:38 AM

QUOTE (drago @ Mar 31 2009, 10:01 PM) <{POST_SNAPBACK}>
Haha...

Well, the trouble with people not listening isn't so much them not understanding - I can deal with that. The problem is that people try to shake me awake and try to do things to "help" me, or they'll see me close my eyes for a few minutes and assume I'm sleeping, when I'm just waiting for a head rush to pass. Instead of communicating with me, they just jump right in.

This is especially in a problem at work, when I need to be able to take moments (w/headrushes and such) without being accused of falling asleep... which I haven't done!!! Ugh.

So, that's the problem - it's not just them listening, it's how they're acting...

drago


Just tell them that any under circumstances you should not be shaken awake or anything like that; unless you have a smoking red flame in your hand, you should be left alone. That'll be a definitive request and if it's not the end of it, then they are not listening to you and either will not, do not or cannot understand.

jenji

#9 dogdreams

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Posted 01 April 2009 - 01:11 AM

Put a sign next to you that says "Do not shake!"? I dunno.

#10 sleepless sleeper

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Posted 01 April 2009 - 01:53 PM

I agree, but place a sign on your back that says "don't touch" instead of "kick". You know what i'm talking about, right?

#11 jenji

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Posted 01 April 2009 - 02:19 PM

How about a t-shirt that reads:

Do Not Disturb!

and on the back it can say:

b/c if you wake me up I'm gonna beat your ass once I'm up.

#12 chimbakka

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Posted 02 April 2009 - 08:51 AM

QUOTE (drago @ Mar 31 2009, 06:01 PM) <{POST_SNAPBACK}>
Haha...

Well, the trouble with people not listening isn't so much them not understanding - I can deal with that. The problem is that people try to shake me awake and try to do things to "help" me, or they'll see me close my eyes for a few minutes and assume I'm sleeping, when I'm just waiting for a head rush to pass. Instead of communicating with me, they just jump right in.

This is especially in a problem at work, when I need to be able to take moments (w/headrushes and such) without being accused of falling asleep... which I haven't done!!! Ugh.

So, that's the problem - it's not just them listening, it's how they're acting...

drago


if i need a min i go in the washroom and sit. heck for the sake of multitasking i usually see if i can pee then too LOL.

for the headrushes... do you get them when changing position (ie sitting or lying to standing, crouching lookking down the standing up?) or just randomly?

also, if i need a second in the back (away from pts or residents depending on where i am). i'll sit and say ok caaaaaaaaaaaaallllllllllllllllm down lindsay and like talk to myself in the third person, take some deep breaths and just sit quietly. this either scares people enough not to want to talk to me, or they get that im trying to center myself.

oh... and well.... i haven't had someone actually try to shake me awake. im lucky in that i dont fall asleep at work, and unfortunately i never go out cuz i work too much i just sleep at home. BUT if i fall asleep watching tv and what not my fiance leaves me alone now.

that said... there are days i get home from work and have a sleep attack before i can shower (mmm old people smell), and he'll say like "ewwww don't use that blanket until u shower" (on the couch).... and i'll say "I swear to F>>>> G>>>> if you say one more >>>>>> word im gonna shove this blanket >>>>>> i need to sleep for a >>>>>>> minute"


haha... now he knows.... napped lindsay is much more pleasant than not napped lindsay.

what if you say "ok next person who shakes me awake I swear im gonna SHAKE TILL THEY PUKE when i wake up!!!!!". and well don't litterally shake them till they puke, but do SOMETHING unpleasant to get your point across

and about the going out and being tired. im still af an of sarcasm "HELLLLLLLLOOOOOOOOOOOOO you are friends with a narcoleptic wtf do you think will happen???" or "ok how long have you known me? who is the dumb one? the narcoleptic who gets tired, or the person who's known them for ____ long who STILL asks fn questions/is surprised about it??????????"

#13 sleepless sleeper

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Posted 02 April 2009 - 11:22 AM

Sounds like you got a good guy smile.gif


and about the going out and being tired. im still af an of sarcasm "HELLLLLLLLOOOOOOOOOOOOO you are friends with a narcoleptic wtf do you think will happen???" or "ok how long have you known me? who is the dumb one? the narcoleptic who gets tired, or the person who's known them for ____ long who STILL asks fn questions/is surprised about it??????????"

ROTFL That is so true.