84 replies to this topic

[jenji]

Oh, that's priceless. My mother cannot seem to find the word narcoleptic when she needs to and instead will often find herself saying, necrophiliac.

I told her she's gonna have to figure out how to get that right b/c I can't have that kind of stigma following me around.

jenji

[Hibit]

One summer I took this field internship where I would be tromping around in Wyoming studying birds, and I didn't tell them about my illness (at the time I didn't know I had Narcolepsy, so I lumped all my symptoms with Fibromyalgia, the main ones being fatigue/sleepiness). We worked almost ten hour days, and some times we would get up at three in the morning to catch birds, and I would always request the following day off, which they thought was a ''girl'' thing to do (all macho macho men here).

They were impressed that I could actually do the work all day considering I was a ''city girl''. And
I did a pretty decent job overall, keeping up with them and everything, but I found out later from a coworker that my bosses often remarked how slow I was coming down a hill or hiking off-trail, so I told him to tell them that I had a sleep disorder and tell them my symptoms. Well, after they learned the truth, they were super impressed, and got a kick out of someone with a severe sleep disorder hiking around in the woods with them.

I just recently found out it is narcolepsy, so I can't wait to tell them the next time I see them!

I don't get any rude remarks from strangers anymore, but I do get some grief from my rooomates about not hanging out all night getting wasted. ''Gee, are you sure you don't want to go out at tenpm on a school night and go drinking even though you have to wake up at 8?''

Do you guys have some more witty responses to rude people though? Those are pretty great!

[Hibit]

Oh yeah, now I remember the first thing I wanted to say.

I recently got laser eye surgery, and a big part of it is that you have to keep staring at a red light, and try not to move your eyes around. They hold your eyelids open with metal things and tape, and then they give you a bunch of drops and shots into your eyeball. Well they gave me a Valium to take beforehand, and then I'm lying there, and my eye is held open and I'm trying to stare at the laser but I keep falling asleep! The doctor kept telling me to pay attention, look at the laser, and so I started pinching myself to try and stay awake. The nurse, apparently thinking I was nervous, then came over to hold my hand and 'comfort' me.

Afterwards I told the doctor that I have N and kept falling asleep, which he got a kick out of.

[loki]

Ok I got a C attack just reading about that surgery...

Oh yeah, now I remember the first thing I wanted to say.

I recently got laser eye surgery, and a big part of it is that you have to keep staring at a red light, and try not to move your eyes around. They hold your eyelids open with metal things and tape, and then they give you a bunch of drops and shots into your eyeball. Well they gave me a Valium to take beforehand, and then I'm lying there, and my eye is held open and I'm trying to stare at the laser but I keep falling asleep! The doctor kept telling me to pay attention, look at the laser, and so I started pinching myself to try and stay awake. The nurse, apparently thinking I was nervous, then came over to hold my hand and 'comfort' me.

Afterwards I told the doctor that I have N and kept falling asleep, which he got a kick out of.

[sleepyhead84]

A couple of my favorite responses to telling people about N:

If you stopped taking naps, you'd have more regular sleep cycle -- my mom

Drink some warm milk -- my mom

Omg, you'll never eat soup again! -- my roommate

You look tired. You have bag under your eyes. -- my co-worker who I haven't told. He tells me this on daily basis.

Erin

[Henry G]

I got some nasty ones, not from co-workers but from family:

Sister (1): He made that disease up in order to gain sympathy.

Sister (2): It's not like he is invalid, he always play the victim.

Cousin in UK:
Don't you feel ashamed? You are over 30. And have no job, no life. I would feel ashamed.

Worse is this. Because when things are well, you have a surge in energy both mental and physical. People tend to assume you act out your bad phases.

People are weird. They expect you to suffer for good on a drip 100% of the time. And should you (dare) become good for a while. Then you have been faking it all along.

Ignorance prevails.

If N has thought me anything about life and people. Never assume anything. Try not to judge. You just don;t know.

I really feel for those people that have N and do not know. What hell they must be living in. And how people make their lives a greater hell.

If only I could start a campaign. A viral campaign. A video clip or an Animation Film. Suggesting certains symptoms (including that of "laziness") may in fact be a neurological condition. For them to try and seek proper medical help. Proper Diagnosis. Make them realise, it could be Narcolepsy.

Who knows, maybe one day.

[loki]

Henry that sounds just like how my family treats me. Once the idea of laziness and faking have been drilled into you it's hard to put it aside when the doctor says it's not your fault never was. So I still feel like a jerk. I wish I could start the type of viral campaign that would cause them to experience these symptoms for a month. Maybe then they aren't so rude to me anymore, not that it would really matter at this point.

[jenji]

Henry:

Unfortunately, many people see things in black or white; yes or no; on or off and cannot even process what it means to not know what you're going to feel like from moment to moment. however, this is not an excuse, for I think it should be a universal law that when it comes to commenting upon the conditions of another human being: less is more.

To be more precise: people can be major assholes. insensitive, judgmental and direct.
and i have a response for your cousin in the UK in particular:
hey buddy, who asked you?

be well Henry,
jenji

[amazingracie28]

I love my sister dearly, but when I tried to talk to her about how I've been feeling and what the N. has been doing to me she said, "don't give it that much credit"....like there must be some other reason that I feel the way I do. Like all I have to do is figure out what my real problem is and I'll be all fine and dandy. I notice that I talk less and less about it to family/friends b/c they all look at me like I'm a nutball. Easy to see how one becomes isolated.

[polkadotvans]

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

I take a second dose of Ritalin and Provigil in the afternoon and almost always have to take a nap an hour later... I keep thinking that just doesn't seem right somehow... but then if someone wakes me up, and I come to a good conscious state again, I am energetic again for awhile - I guess because the medicine is still working in me. It was just taking a nap like I was.

[polkadotvans]

Oh, that's priceless. My mother cannot seem to find the word narcoleptic when she needs to and instead will often find herself saying, necrophiliac.

I told her she's gonna have to figure out how to get that right b/c I can't have that kind of stigma following me around.

jenji

I was trying to explain N to my 9-year-old daughter, and I started to say that there's another word that sounds like it that ppl get mixed up but it's not correct, but then I thought I don't even want to put that word into her head cuz then she'll get it mixed up (NOR do I want to define that word to her!!!), so I ended up just saying that first part... "there's another word that sounds like it that ppl get mixed up but it's not correct."

[Eumenide]

Sadly, even working in a medical environment, I find that virtually all are ignorant about narcolepsy. Furthermore, I find that it is stigmatizing due to all of that ghastly misinformation in television and movies, and due also due to the medications that we take.

I deal with it by keeping my mouth shut. Trying to explain or educate has been an almost universal failure. You cannot educate the willfully ignorant, so why bother?

[Stacy D]

I've pretty much heard all of the above too. I think the most annoying is the "I'm tired too" or "get more sleep" type of comments because they just don't know this kind of tired. I've given up explaining. At least I know the truth. Luckily I haven't heard too much malicious stuff, it would probably get me in a fight.

My coping mechanism has always been humor for everything so most of the time I think it's hilarious that I have narcolepsy. Movies and television that create misinformation and stigma are kind of annoying though. People are only allowed to laugh at my narcolepsy if I started the joke; it's only funny if I say it's funny.

[jenji]

"No seriously, is jenji drunk?" When everyone and their brother knows I haven't touched alcohol in 20 years.

"Stop slurring your words" I love that one.

I have devised 100 different gestures (to be used either awake or not) that say: piss off jerkwad!

My true friends are so fantastic that it makes up for all the dummies.

jenji

[Nodding Narco]

"i wish i had narcolepsy and could sleep anywhere anytime too"

makes me want to slap them across the face
seriously i don't think many people think before they speak

[sunrisemoon]

As an English teacher, I feel the need to apologize for insensitive colleagues everywhere. For me one of the hardest moments comes when I try to explain the condition. That look on a person's face when I tell her or him that I take one medicine to help me sleep at night and another to help me stay awake during the day. Each gaze of disbelief seems to burn itself into my brain!

I think that truly is the hardest thing for people to wrap their heads around. You're tired all the time, but you have to take drugs to go to sleep at night, then you have to take more to wake up? Uh, yeah...

When I did my trek a couple of weeks ago, I had the unfortunate pleasure to get a tent next to a LOUD snorer. OMG! I took double my meds one night, just to get to sleep and was WIDE awake to the point of being so anxious to sleep I had to cry....which just made it worse. Then a freakin' rooster started crowing at 4am, out of bed at 5am...and I went on autopilot for the next 3 hours. The second I was made to sit down, my eyes shut and my chin hit my chest. Once I figured out the insomnia hit a brick wall, I took my day drugs. I don't think the people in my group really believed me till that moment. From that night, the snorer asked for his tent to be moved and someone gave me ear plugs. Took practical strangers one day to get some understanding, yet my family still don't.

I've got one friend who tells me all the time how tired she is.

The depressing thing like Loki said, sometimes I wonder if I'm just lazy, because that's what I think people think of me. I wish I were just lazy, coz then I could do something about it.

[wayne]

The ones that bug me the most are-
"Are you high?"
and
"Should you/Can you Drive?"
It really just brings me down and reminds me im stuck with this disorder that the average person does not know much about... and like most people they are afraid of that. They think a narcoleptic driver is just a time bomb waiting to crash into their mini-van. How bout ya get off your phone and worry about your driving and ill worry about mine.

[wayne]

ohh and when teachers just think im lazy cuz im sleeping in class.

[ridgerunner1]

About an hour ago when I came in to work I was telling my co-worker that I have N. Of course she was clueless about it so I tried to explain what it is in a couple of sentences...Her reply was "That's awesome, I would LOVE to be abe to sleep all the time!"

I'm still considering choking her.

[narcshark]

There was a file at work that had been misplaced for about a month and everyone had looked for it unsucessfully. Unbeknownst to me, apparently many people assumed I had lost it, since I'm the narcoleptic (so I guess that means I'm incompetent? hmmmm). A coworker found it on her desk and remembered that she had accidentally forgotten to put it back where it belonged. She fessed up, which was fine and honorable. The part that blew me away was how many people came up to me and told me that they had (incorrectly) assumed it was me....whatever! BTW, I have never misplaced a chart. It's amazing...I told people I had narcolepsy but I guess they heard me say I had dementia.