AnnieJoy

When They Are Trying To Be Nice

14 posts in this topic

Last night I was at a restaurant with my parents. I was a little upset. We had been talking about my upcoming appointment and the things they might say concerning the results of my sleep study and MSLT. 

I got tired and leaned my head against the wall for a moment. 

 

I tried to open my eyes and when I did an older waitress was standing in front of the table. 

She looked at me odd and said "Oh honey, you tired?" 

 

I was caught off guard so I just quietly said yes. 

 

She shook her head as she said "Honey, you are much too young to be tired." 

 

I was so surprised. 

It is so obvious I am not like them. The waking people. 

I tried to laugh a little. My parents said nothing--just kind of stared into space. 

 

I wanted so much to say "ma'am, you have no idea of tired." 

 

But that would be unfair. 

I don't know her. Maybe she does. 

She walked away and I held back bawling. Just teared up and for the next hour I kept my eyes as open as I could. Tried to act like I didn't feel the way I did. 

What do you do in public when things like this happen. Do you shrug it off and move on? Do you say something?

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I hold out no expectation of any one getting it right or understanding. I just try to get a private laugh or at least bite my tongue on my annoyance. I am far less frustrated when I do not hope to be understood.

I think that Narcolepsy is Latin for "what the !%#$ is that".

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Strangers will probably never understand. I would like to think that she meant well and was simply expressing concern for you and not passing judgement. You responded correctly...no need to second guess yourself or analyze it further. You are in a fragile and emotional state and it may not get any better for a while. Diagnosis is one thing...finding the meds that work is another...finding a lifestyle that works for you is another. It's overwhelming and it's ok to cry. 

I really like Hank's definition...when you get to the stage of "Enough of this !%#$ing s*+t", you will have turned a corner and be ready to deal with the cards that life has handed you.

Chin up girlfriend!

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I hate " I understand, I'm tired too."

That is like saying to someone in a wheel chair "I understand, I sit down too". Not quite equivalent.

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"Smiling faces try to understand...", yeah I wish people would quit trying to cheer me up. I'd much rather hear them say, wow that sucks, instead of Cheer up, stiff upper lip, me ol' chap

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I try to educate people as often as possible. When someone asks if I am tired, I tell them I live in a perpetual state of tired called Narcolepsy. When they chuckle and asks if I can fall asleep in the middle of a sentence, I tell them it is more likely to happen when I am driving my 7 year old home from school. They usually get it after that.

Until we speak up and inform the world, we will forever be a group of people nodding off at the dinner table.

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It doesn't usually bother me when people starting telling me how tired they are, I know they feel really tired and don't understand that people with N never feel refreshed. I haven't slept more then 2/3 hrs a night for about a week and half so I have no patience.

When I got to work this morning my body was very shaky and every muscle in my body ached so when a lady I worked with asked what was wrong and I told her and she stared going on about not sleeping because she was moving I got so annoyed. I was like well I never sleep well because of my narcolepsy so I guess my body has just had it and I walked away.

I have no problem telling people I have narcolepsy, I'd rather them know that then just think I'm lazy because I always seem tired. I think about it like I do migraines, a friend got her first migraine last year and called me and said that's what you experience all the time now I understand why you can't go to work or don't want to do anything I always thought you were exaggerating.

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Two to Three hours? My Christ!  :blink:  I don't know how you do that. I'm so sorry.  :(  I couldn't do it. My reality matrix begins to fragment if I get less than 8hrs two nights in a row.

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When I was stuck in the always sleeping mode I never knew how painful insomnia could be or realized that my narcolepsy pendulum would swing in that direction (especially as I didn't know I had n or how it works). But it was actually going into the chronic insomnia that I finally got the narcolepsy diagnosis. I'm so sorry for your struggles. I could only do a couple days at broken 3 hours and then I would crash and sleep some (missing work in the process).  Hoping we all find periods at least of stabilization to help encourage us through the rough times. :-/

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I miss my reality matrix. I think when it fragmented with the onset of my tiredness a few months ago it disintegrated it as well. 

 

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I miss my reality matrix. I think when it fragmented with the onset of my tiredness a few months ago it disintegrated it as well. 

 

I barely hold it together sometimes. When I get in those situations where the world starts to twist and walls start to slide, I just tell myself it's all in my head over and over and just try to knuckle dow nand focus on one task. It helps me get through those times where I feel like I'm sliding into hell. The Xanax helps too.

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I get that all the time as I work with the elderly; many of my clients tell me " you're young, you can handle it" when referring to working and going to school. And honestly I just wish I could make them understand that being young doesn't have anything to do with it.

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Being young makes it suck more. If this had happened in my 60s or something I'd be like, "Oh well, I'm getting old anyway, time to retire I guess." Now it feels like what should be the best years of my life are being ruined. Basically 25-27 has been a complete waste of existence. This is why I don't own a gun. I'll get hit by really acute episodes of depression, and I'll be bordering suicidal for one or maybe two minutes before I get my head back on straight. I love shooting and used to be pretty damn good at it, but I don't want the easy way out lying only a few feet away if you know what I mean.

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