84 replies to this topic

[Lais02]

My last boss (who was also my aunt) used to say things like all the above, I need to eat better, excercise more, lose weight and was highly annoyed that I wasn't magically cured by my medication 100%. But, the worst was when she became convinced by her own self diagnosing that I didn't have narcolepsy, I was probably diabetic. She even brought in her sugar testing kit and made me test my sugars right there in the office in front of her. She didn't seem to have much to say when my numbers were normal.

I also have experienced all of the same with teachers... it never ends... they never even come close to understanding.

A couple weeks ago my dad was at a doctor's appointment and happened to bring up how he has 3 kids with N and life wasn't going too well for one of them (me). The doctor told him... He is sure that no one really has N... they're all just hypoglycemic!!!

My mom told me and I said "Wonderful... everyone on NN will be so happy we're all cured now!" LoL

That whole thing made me pretty upset, because my parents are struggling with the whole "I don't believe in N" thing already... so now that was another setback.

Oh well. I guess all we can keep doing is educating people like we are. I explain it to anyone who will listen, because if we don't explain it they'll just have some weird understanding that is incorrect. I think it's a pwn's duty to explain N as much as possible. Maybe someday other pwns will get less of this stuff from the public if we do enough to explain it now.

[hathor]

ha ha ha its so funny reading what people say to other people with narcolepsy some of it is like reading what people have said to me!!! the two comments that bug me the most is when i tell people i have got narcolepsy and they say " i think i have got that im always tired" and the one that i really hate is " so what happens when you are having sex then??" like its any of their business!!! im guessing that most people on this website are from america. it seems that americans know more about narcolepsy as a general thing but in the UK not that many people know about it or have even heard of it. The only way people are learning about it is through T.V. programs. When i was at school my teachers were great about it. i went to 3 schools since being diagnosed and i never once got told off for falling asleep. if i had p.e. in the morning there wasnt really much point in me being in school the rest of the day especially for maths but the teachers knew about me and in the end i was aloud to miss P.E. so i could stay wake for more important things which was really nice of the school but i still fell asleep!! i have never been able to get a job so i have tried college loads of times and the tutors have always been really good about it. i have never had to ask permission to leave the room or anything like that.

[mtc]

I just HATE it when people say it must be nice to have an excuse to take naps. They don't understand that Narcoleptics actually would rather stay up. Most of the time I hate to stop what I am doing because I have to fall asleep. It is SO inconvienent(sp). To me, a nap is somewhat voluntary. So I really don't call it napping; I say I have to fall asleep.

[Kidlet]

I'm so tired of being tired and hearing other people talk about how tired they are!

Fortunately, when I told my employer, they were (are) really great about it. Hopefully it won't get to the point I need to schedule naps, but I'm sure they'll work with me then, too.

According to some people, I'm still lazy, need to go bed earlier, and of course, exercise and lose weight.



Yeah, yeah. You first.

[Ashley]

My boss is too lazy to park in the upper deck parking lot where employees are supposed to park, so she parks next to the building and gives me her keys so I can move her car!! I don't even drive anymore. By the time I move her car and get back to my office I'm so damn exhausted that I have to take a nap.

She also calls in a lot because she's too tired to work. She got a laptop computer so she can work from home when she's too sleepy to come in. WTF!!!

She's on salary so she doesn't have to worry about sick hours and all that. Meanwhile, she's questioning me about what I'm going to do.

[Marcianna]

I was reading all of your stories and am embarrassed to even be a part of the human race sometimes. It is Appalling to believe that people can treat us and others this way. It makes me very angry. I posted a special song for all of you in the music section.

Here is a link:
The best song you will ever hear

Get this song in your head. Let it run through your veins. And sing it out loud driving in your cars on the way to work. Sing it on the bus or Train if you have too. Rebellion is ON!!!!!!! HA!!!!!!!!!

[angellus]

I was reading all of your stories and am embarrassed to even be a part of the human race sometimes. It is Appalling to believe that people can treat us and others this way. It makes me very angry. I posted a special song for all of you in the music section.

Here is a link:
The best song you will ever hear

Get this song in your head. Let it run through your veins. And sing it out loud driving in your cars on the way to work. Sing it on the bus or Train if you have too. Rebellion is ON!!!!!!! HA!!!!!!!!!

YEs!!! rebellion.. right after my nap.. i promise...

[jenji]

Eventually I got so bad that instead of say, eating lunch or running to the post office on my breaks, I would go into the break room and literally lie down on the table and fall asleep. My co-workers found me to be most "unusual" and many accused me of being a slacker even though my work was consistently finished and accurate. It took me 15 years to get properly diagnosed and while I was at this particular job I had dropped from cataplexy twice. Still, I was accused of being neurotic and/or faking it.

However, my favorite one-liner came from a doctor. I went from going to university, working full-time and playing on the NYState women's soccer and volleyball teams, to barely being able to function and once the doctor (and many others) couldn't come up with a definitive diagnosis and/or suggestion he said: "Perhaps you should join an aerobics class."

We all have our horror stories, but I'm not too interested in wasting any more precious energy on negative reflections, so I'll leave you all with my favorite family/friend one-liner:

"Narcolepsy? Well, that explains a lot, however it's quite frightening that we've consistently used you as the designated driver."

Of course the narcoleptic is the designated driver; why wouldn't she be?

be well,
jenji

[Lais02]

I was reading all of your stories and am embarrassed to even be a part of the human race sometimes. It is Appalling to believe that people can treat us and others this way. It makes me very angry. I posted a special song for all of you in the music section.

Here is a link:
The best song you will ever hear

Get this song in your head. Let it run through your veins. And sing it out loud driving in your cars on the way to work. Sing it on the bus or Train if you have too. Rebellion is ON!!!!!!! HA!!!!!!!!!

I agree... good song

[Kidlet]

YEs!!! rebellion.. right after my nap.. i promise...

LMAO I'll bring it up at the procrastinators meeting...tomorrow

[Sam.Toombs]

i think the favourite thing i ever heard was from my doctor ... he was asking me about my C knowing full well that i had N and C and i said well i'm having one right now - my C was in my legs and i couldn't move them - he then asked my mum to help pick me up to see if i could stand up


obviously i fell straight to the floor he then looked at me and with all seriousness said "well, i don't know what the hell that is!"

Sam

[mtc]

My dentist said I was the only patient that could sleep during a root canal...

[mtc]

I "like" the suggestion to drink more coffee because it sure works for them. Little do "they" know I can drink a quadruple expresso and fall right to sleep. I really do wish it worked!!

[Marcianna]

I "like" the suggestion to drink more coffee because it sure works for them. Little do "they" know I can drink a quadruple expresso and fall right to sleep. I really do wish it worked!!

I am the same way caffiene has a reverse effect with me....

[mtc]

It's frustrating..sometimes I can take dextrostat and fall asleep. nothing consistently works (but that isn't news to anyone reading this!!)

[Marcianna]

anyone try Dimatap Cough syrup? lol... I use it in extreme emergencies when I want to stay awake.... and it is yummy!


Sorry it was off subject. just wondering....

[mtc]

does it contain pseudo ephedrine?

[dogdreams]

However, my favorite one-liner came from a doctor.

Oooh, me too. Years ago I went to my "second opinion" (which was more like a second abuse session) and he says "Do you know how antidepressants work to prevent C?" and I lied and said "No." And he said (I kid you not) ... "It's magic!"

And he's the guy behind the desk with degrees on his wall who gets to charge me $400 for nothing. Now THAT's magic!

[Marcianna]

does it contain pseudo ephedrine?

Hmmm. I dont know. I just know its yummy....

Oooh, me too. Years ago I went to my "second opinion" (which was more like a second abuse session) and he says "Do you know how antidepressants work to prevent C?" and I lied and said "No." And he said (I kid you not) ... "It's magic!"

And he's the guy behind the desk with degrees on his wall who gets to charge me $400 for nothing. Now THAT's magic!

now if only he could pull the money for the bill out from behind your ear.....

[Katlynran]

The craziest thing somebody ever said to me was after I told this guy I had N. He says with a totally straight face, "Oh isn't that that thing where you sleep with dead people?" I said "No, that's necrophilia" I don't know if he was serious or not, I just will never forget that one!