156 replies to this topic

[AssociatedWithFire]

I hope you find something that helps. It's so crappy to feel this way.

thanks, and sorry to all for the multiple posts, Im really not sure how that happened. I hope it wasnt me but at this point..huh who knows?

[amazingracie28]

I work as an insurance verification specialist for a sleep disorders company. I also work on getting authorizations for sleep studies for some patients so I've seen some pretty crap-tastic hoops pts have to jump through just to get authorized. Luckily through my work I knew a little bit about N. and the tests to diagnose it before I actually went through it all. There are drawbacks-for example I had to go to an insurance conference recently that was several hours long, boring, and in a dimly lit (for powerpoint presentation) room. Even with my meds I had a horrible time not falling asleep! When my boss asked me how it went I just told her boring insurance conferences and Narcoleptics do not mix. She laughed so at least she had a sense of humor about it...lol....said she hadn't thought of it that way. That's kind of the way of things I'm finding out...people don't really think about (or care sometimes) about what struggles PWN go through. Insurance companies can really suck (no news to most of you I know.) Looking forward to meeting my fellow PWN.....

[dogdreams]

I'm a research scientist. I used to do N research, but moved on so I could finish my Bachelor's. Right now I'm doing pubery, ovary, Rhett's syndrome research and I hope to get into grad school one day. I'm pretty happy working on anything neuroscience.

[NarcoPhotos]

I work for an auction company on the paper pushing side! Not very exciting, but I do enjoy it!

[angellus]

been there.. got the t shirt. and thats all thats left.

sperated then divorced after 12 years with two kids
diagnosed with sleep apnea.. then narcolepsy..over the course of a year.

laid off in january 2008, got another job in June 2008. Laid off from there in August.

I own no property other than a bed, tv (no cable or internet or phone) and couches that my parents owned when i was 5 years old

so yeah, went from making 100K a year to unemployment, which will run out soon.

I have tried every drug that my sleep doc offers.. so he dont know what to do and neither do i. I just know i cant afford to buy food for my kids to come visit me... or even christmas presents.

but Im still breathing at least.. oh wait.. that's right i don't at night..dang sleep apnea



Id say if you have something going like a business, and you know its a time bomb.. then step back, find a partner, or someone who could work for you, or sell the business.. which of course is hard when its only you.... You cant teach someone to be you, however i have tried to give narcolepsy to my ex wife. Every time i see her i try and shake a little off on her..

[Beverly]

I am a full time student going to classes Mon-Thurs. I also work full time (30hours/week) as a valet attendant (for 10yrs.). I work Friday 3am-1pm Sat. 2am-12pm and Sun. 2am-12am. I sleep on breaks between classes and on breaks while at work!

I think the Provigil is helping.....at least sometimes. I began taking it late in August of this year. I take 200mg and sometimes will only take a half a pill. I have all of the N symptoms other than the feeling of being paralyzed when you awaken.

I have been on Xmas vacation for about two weeks, and do not go back to school until Jan. During these two weeks I have only taken my Provigil once, and have only fallen asleep once at a time when I shouldn't have. I find it extremely easy to stay awake at work because as a valet attendant I am always walking/running. I have NEVER fallen asleep while working. At school, however, I can easily fall asleep becasue I am sitting for more than five minutes! I don't want to have to raise the amount of milligrams I take, and, in my imagination, by not taking Provigil when I am not at school maybe I will lose the "tolerance" I have for Prov. Does anyone think that makes sense!!??

[Henry G]

I redesign websites to show up high in Google.

[sleepydreamer]

I'm an Equities Stock Trader for a financial firm.

[malachi777]

I am a courier, PT early am hours when I am at my best.

Hey, I'm a courier too!!! Part time also.

[BaRb79]

I'm an Emt . I work on an ambulance. Currently 6 weeks away from being a Paramedic...

[sunrisemoon]

I started out in administration, then moved into IT doing database development. I was the only girl in most of the places I worked, but I liked working with the guys in my teams. After a while, I tried to get out of IT, but got a bit pigeon-holed and ended up in IT administration.

I got tired of all the thinking all the time, so I did my course/s to become a personal trainer, which I now love doing. It's not work at all and I can pick my hours for the most part. I don't have the energy a lot of the time to do as much as I'd like to, as fast as I'd like to, to be able to build my business, but it's a trade off. I'm much happier even with "where am I going to get the money for..." is in the back of my mind a lot.

Being out and about, getting physical and eating better helps my N symptoms. I feel much better than I did in a sedentary job staring at a computer screen and having to go hide in my car for 20-30 minutes to sleep.

[Magatha57]

Hi, I am new here, and haven't been officially diagnosed with this sleep disorder, however, I have a bunch of other ones, (Obstructive Sleep Apnea, Periodic Limb Movement Disorder, Restless Legs Disorder) and according to family genes, and my symptoms from before I started to self-medicate, and before the anti-depressants, I think I may have cataplexy and a few other things that I have forgotten the names of.

I have a BS in Horticulture, and worked in research and development for many years, until I too was 'downsized'. I had been doing fairly well until then, making a great salary, doing some international travel, but struggling to stay awake, to remember things, and to get to work on time. Getting there on time or early is much more important than working through every single lunch hour and break, and even more important than staying late, but not by a lot!

I have done several things after that, however, with the rising stress levels, not only from not working and having the judgements of family stabbing out from their concerned eyes, but from other things as well. I found that working for myself was a tremendous effort, I created so much work for myself, and I couldn't remember things from one day to the next... however, that was so much better than working for others, in jobs so unsuited to me and my ADD, OSA, RLS, PLMD, depression, The Vapors, etc... with multitasking, poor training, and, whah whah whah... that I bombed bigtime for the first time in my life. the second job was even worse since it was for a relative. and I had my old beginners luck, but then everything fell out my ears and onto the floors.. and I made mistakes a kindergartener wouldn't make... too tired, too stressed, too... what?

Anyway, I got my 4 year degree by working 2 to three part time jobs and taking 8 years, and have fallen asleep in fields while taking research notes for my favorite grad student. Being a night person, I slept through most of my early classes, and could nap on the head of a pin, as long as those dancing angels would move over a bit.

I used to have weird dreams, but I haven't had a dream in years, unless while taking a nap, sometimes, but when young I would see strange things as I was falling asleep, and upon waking I would find myself paralysed in bed, unable to move, unable to scream... and eventually, after having a heck of a time convincing my PCP Doc to test me, I found I had severe obstructive sleep apnea, and haven't been recorded in rem sleep in any of three polysoms...

BTW haven't been tested for narcolepsy - since I am taking effexor, and of course - this is a rare disorder... so why would I think I had it... and with every diagnosis, every prescription, I think I feel better at first, and notice an improvement, but then I still am not as 'better' as I hear described. and then the Docs start looking at me funny.. dontcha hate that look? like, well, we've done all we know how/ want to/ can... so it must be all in your head... or you are a whiner? Anyway, THANKS for being here as I start to learn somthing about what may be another little lovely in my brain. Your words will be the ones I count on, the ones I go to and the ones I will remember. Or at least the ones I return to when I forget!

thanks again,

Mags

[Lais02]

Welcome to NN Mags!

[drago]

During the fiscal year, I'm doing theatre minionships, I mean internships, working on becoming a professional theatre director.

During the summers and sometimes for temp work, I do computer science/programming and web site design. I specialize in information retrieval/search engine technology and data mining/database stuff in computers, although generally I am employed as a freelance web designer.

... oh dear. :-\

drago

[Henry G]

Why don't we join our forces?

I mean really!

We have so many skills and talents.

OK sure we have N and all ..

So we have to model . . devise a strategy plan - that works flawlessly , so if someone can't do something for 2 weeks - it doesn't matter someone else (or two or three other ppl) can step in.

A sort of decentralise system, where no specific single individual is extremely important and vital for the success of the venture, but the organism work as a whole.

An organic system. But very effective. Very efficient.

Maybe when we have enough numbers, we could outperform other organisations.

It is very difficult - nearly impossible - for a N individual to succeed alone in life.

But we don't know yet if the same case is true - if we (very) efficiently program a structure of collaboration.

And given our thirst to succeed, we would devote anytime to make this work - when energy & time is made available.

It's like donating 1 cent. If lots of people do it. We end up with loads. It doesn't matter how much you give .. but how often

It doesn't matter if some gives 1 hour of their time a week, or a month .. or if suddenly a second person - devotes 26 hours of continuous input and then burns and crashes out.

What is important is that no person should be made feel guilty. Since "guilt" and want for recognition is a default for N ppl anyway. So in this system - rewards should NOT be made proportional to input.

Does this make sense?

What would the venture comprise of? Business. I don't know what exactly.

We have experts here. And we have people who are hardworking. It doesn't matter if some have degrees and others haven't completed any training. Because everyone has something valuable to add with their presence.

I know this is still very vague ... and in the air.

What we need is discipline and selflessness. Give up the recognition. The system should be like - if someone added a lot - noone knows. If someone is sick or having personal troubles and have disappeared for a while - noone knows.

But the system itself is strong, flexible, capable, creative, intelligent, intuitive, powerful and indestructible.

People have created such depersonalised systems in the past. But the problem with those - is that they were evil. A "corporation" is nothing but a greedy evil souless monster.

So one needs to program a similar system, depersonalised but benevolent. It cares a lot about survival, but not at the cost of destruction. It's a Terminator - but the "good" one !! - instead of the baddie.

[Bafflegab]

I'm a writer. Last October 2008, after a really unhappy stint working as a medical reporter for one of the major news services, I was burned out and ready to quit the profession when I got an offer out of the blue to write medical research proposals for doctors and scientists in the military and Department of Defense.

Except for some of my co-workers who are overly sensitive, I love it. I work with really smart people and don't have to worry about understanding the finer points of the medicine or science I'm writing about. I can concentrate (for a couple of hours a day, anyway) on producing well-written and edited material. It's rare to be able to do something that is simultaneously selfish and for the greater good. I also get to write the occasional medical paper or journal article.

Over the years I've been lucky to have many more good bosses than bad, but the man I work for now, is truly remarkable and I couldn't be luckier than to have the work situation I do. When he offered me the job he said he expected me to always be honest with him. He hasn't disappointed.

After twenty years of living with an abusive woman who made me believe my fatigue and exhaustion were nothing more than personal weakness, I've found peace and contentment. My kids are growing up to be what I think will be good adults, I have a new wife who is truly special and makes me believe that happiness is possible, and a job I'm good at and enjoy. And, to top it off, I have two physician assistants acting as my primary care providers with whom I share a mutual trust. One is my family practitioner and the other is my sleep specialist. Never did I think my life would be anything more than a struggle to think clearly.

[hathor]

wow im really inspired by all the jobs u lot do. ive never had to work because of my N and C. but i have had a few party plan jobs but spent more buying the company products to work than i actually made. im going back to college in september as an adult learner ill proberbly be the oldest in my class at 30 but at least i wont be sitting around on my butt doing nothing. for 4 days aweek i will be learning about the travel and tourism industry and i think at the end of the 2 years i wouldnt mind a job in long haul holidays ill have to see what is out there then. im just concentrating on getting the qualification first. i know it will be hard but this year ive got a place to come and rant lol so ill proberbly be on here even more.

[Fra2302]

Wow, more and more jobs are vanishing and I am amongst one of thoussands who are out of work.

Well I was mentioning this to a friend of mine who responded back to me, ha you like computers don't you? Why not promote your computer skills online, and start your own business. I would like to add on to this thought, for those of you are good with a skill, be it drawing, cooking, computers, you name it, why not offer helping your neighbors/friends out with things, then with the word of mouth, perhapes your neighbors might know someone who could use you for employment.

I know that living with narcolepsy really could prohibit what one can do, but if you take a risk, and help out someone using the skills and abilities in which you have, it could really bring back to you a greater good.


Always remember, "Now matter what you say or do with me, I am still a worth while person!"

[Mike B]

I worked on the assembly line for the Ford Motor Company for almost 14 years. When I got real bad, and was finally diagnosed, (I know you all have your own horror stories about that), I was disabled by the doctor. The company then took my years of union service into consideration and gave me a great retirement package (Thank God). Pension is not large, it's based on number of years worked, and supplements SS, but the benefit package is out of this world. I was very fortunate.

Now I work part time about 8 to 12 hours a week. Just something to get out of the house for a while. No more than 2-3 hours, 4 days a week. Any more than that and my sleep schedule goes to hell. My boss is great. He and some of the people work with took the time to read about it, and after knowing me now for about 3 years they can pretty much tell when I start to decline even before I do. They are always carefull not to let me drive home if I don't look capable, and they never bat an eye if i call up and say, "Hey, I'm in no shape to drive today".

[Jesse]

I'm a software developer. I used to struggle with staying awake at my desk, even with taking high doses of stimulants. More recently I have been able to stay awake during the day much better since I started using Xyrem.