I have google alert for Narcolepsy as well as other conditions and I get maybe a dozen a day of which maybe one in one hundred is really about Narcolepsy. I can’t think of the name of any other disease which is misused like this, as if it was a cough or toothache. “I have had narcolepsy all day” is typical or “Really narcoleptic today”. Little wonder it can be hard for some people who know you to take it seriously.
If it is upsetting me, doesn’t it make you all really mad?
Yes, fifty-seven years worth!
That's very sweet of you! Perhaps I'm more "thick skinned" than most, but that's not surprising or bothersome to me. I have rather low expectations for folks -- at least in the US, we are grammatically, intellectually and emotionally lazy. We frequently use words like "retarded", "heart attack", "rape" and "awesome" with little thought to the depth of what we're saying. We don't take responsibility for our actions and readily blame others (part of my job as a City employee is to take liability claims for our organization -- the things folks want us to be responsible for is ridiculously long and reflects poorly on our society as a whole), so I'm not surprised that folks have little regard for the misuse of a medical term that they have learned little if nothing about. I appreciate your coming to our defense, but as an environmentalist and one who opposes the large-scale degradation of our food supply, water, air, and (oh, yeah) civil liberties I don't have the energy to be concerned with others' choice to be ignorant...I'm just trying to keep the planet livable... Thank you again, Nel!
I was diagnosed in Middle School and now I am in my early 30s and I am still upset by how our society makes Narcolepsy seem like a joke because it isnt. Narcolepsy has helped me creatively but mainly being a Narcoleptic is a pain in the dairy air.
Yes, it is disheartening that the term is used so widely. I'm going to see a specialist to see how he classifies my condition. I signed up for this board because I couldn't find anywhere else to go for useful information about my symptoms: Excessive fatigue everyday and recurrent hypersomnia - I'll sleep for days 16- 20 hours. Nuvigil has helped tremendously with the daily fatigue, however, I continue to get episodes for hypersomnia.
Good luck Virginia with finding out what is going on. I will tell you one thing and that is you chose a good place to try and find help. I signed up on this site when I was at my wits end with Narcolepsy and just needed to be a part of a community that understands what I am going through. I would try taking naps and see if that helps.
With the Nuvigil I don't feel a need for naps. The hypersomnia, usually hits me with out warning. I'm going to try to figure out if there are any triggers to avoid.
And this isa great place for info. I've already been directed to a local Narcolepsy group and have found other resources through this forum - I am very grateful.
Theredbelt said:
Good luck Virginia with finding out what is going on. I will tell you one thing and that is you chose a good place to try and find help. I signed up on this site when I was at my wits end with Narcolepsy and just needed to be a part of a community that understands what I am going through. I would try taking naps and see if that helps.
It doesn't really bother me, but sometimes it gets to me a little when it's my family and friends. I wish that ppl close to me would do some research on the condition. Words cannot describe how sick I am of hearing references from the movie "Deuce Biggalo" lol. I wish I had a dollar for how many times Iv'e been asked if I am anything like the girl from that movie.
That means zillions of people are tired or know others who are. That’s why Honda thought the ad was an okay dis. It’s like old racist or sexist jokes: it took a movement to educate this culture. If anybody is angry about this, get those Google alerts and comment back “Narcolepsy is a serious neurological disorder”. I will try it.
google: Nell the Narcoleptic: Asleep on the Job (2013)
I can’t get that to play on my iPad shadow1 but I fear the worst…
Welcome, Virginia, and good luck!
I'm also on Nuvigil; I don't know that, for me, it's as cost-effective as the pot of coffee I down the first few hours of the work day (if the caffeine doesn't keep me awake, walking back and forth to the bathroom will), but it helps.
If it's of any use to you, my more common "triggers" are eating (particularly carbs); sitting still for an extended period of time; "white noise" (an engine/heater/repetitive noise in the background, etc.); feeling cozy warm (for lack of a better description...that fleece blanket in front of a fire kinda feeling); dry eyes; and physical tiredness (some folks are energized by daily exercise, I have to nap after...whether I can/want to or not -- it happens). I suspect that if you start a separate string you would get an interesting variety of things; perhaps these will help you to identify yours...
Hope your day goes well...
Virginia said:
With the Nuvigil I don't feel a need for naps. The hypersomnia, usually hits me with out warning. I'm going to try to figure out if there are any triggers to avoid.And this isa great place for info. I've already been directed to a local Narcolepsy group and have found other resources through this forum - I am very grateful.
Theredbelt said:Good luck Virginia with finding out what is going on. I will tell you one thing and that is you chose a good place to try and find help. I signed up on this site when I was at my wits end with Narcolepsy and just needed to be a part of a community that understands what I am going through. I would try taking naps and see if that helps.
Love my old doctor,
…She said if coffee helps do it because you’ve been dealing with this your whole life…
Take care all,
Ranger
Just one other thing not many understand is the cognitive decline that affects me. At times I can’t count money if I’m in a store and “about to go down”…
Ranger
And “stressful situations” affect me negitivetly…
Ranger
Favourite quote:
"I try to take one day at a time, but sometimes several days attack me at once."
Jennifer Yane