156 replies to this topic

[Megan Adam]

I am the supervisor of a group home for mentally ill adults. It's very challenging at times... there is a lot of driving and my "office" is a regular house with lots of tempting couches. I'm very dependent on my medications, but I wasn't diagnosed until I was symptomatic for 13 years, so I've developed a lot of coping skills.

[Wink]

I am the supervisor of a group home for mentally ill adults. It's very challenging at times... there is a lot of driving and my "office" is a regular house with lots of tempting couches. I'm very dependent on my medications, but I wasn't diagnosed until I was symptomatic for 13 years, so I've developed a lot of coping skills.

Hi--I'm currently working as a home healthcare worker for seniors. My son who works at McDonald's makes more than I do. Aside from that major minus, the pluses of the job are: I can pick clients who live closest to me--very minimal driving req'd. Old people sleep alot, so I catch some zzz's when my client does.Except for one woman, all my clients have been lovely people. You never feel unappreciated, just underpaid. Formerly, I was an X-ray technologist, but have lost the concentration needed for that kind of work. I made 4 times the amount of money and tried to hang in there for that reason, but eventually decided the risk of over-exposing innocent people to excess radiation due to my errors was not worth the money. Unfortunately, the judge who denied my disability appeal thinks I can still do this work with naps as needed. This is a job where you 1. won't get hired requiring the accomodations for sleep you need. 2. you can't sleep when your co-workers do your work. The Americans with Disabilities Act can be the law, but if it doesn't work in real life--what good is it?

[Saraiah]

I've worked in a bunch of different jobs over the past 20 years, as a researcher, a statistician, and a counselor in different roles in the mental health field. Most recently, I've been working as a vocational counselor with people with chronic mental illness.

Unfortunately, I have been very ill due to a combination of the symptoms of narcolepsy and other chronic illnesses over the past year, and have missed a lot of work. It took a long time to get each of the illnesses, including narcolepsy, diagnosed and treated. As my health slowly improved, and I took an easier position, my job performance has become quite strong again. Although I have provided medical documentation for each absence from work, my supervisor has been unable to believe that I have actually been physically ill, and has become hostile and angry. He attempted to fire me about a month ago, but since he had systematically lied about the reasons for firing me, I was very quickly able to show HR that what he had said was untrue and that my performance has been very good.

I was finally diagnosed with narcolepsy last month. Because my most recent position required me to drive during each workday, I am currently on leave while waiting to see whether the Xyrem will increase my alertness sufficiently to drive again.

In the meantime, I've begun considering retraining for another career which might improve my chances of being able to work on my own schedule at home in the future. And I'm looking for good ideas!

Saraiah

[Stacy D]

I'm in the Army. I do Satellite Communications which, for the most part, involves doing nerdy things with computers.

I don't know yet if they're going to put me out. I can't stay in, it's too difficult to even do my boring nerdy job. I'm due to get out next year but I'm scared. I don't know if I can find another job, especially one that will accommodate me and pay well enough. My family cannot afford for me to be out of work. They are all on my health insurance. I don't know if I will be able to get health insurance after this. I don't know if Veteran's Affairs will take care of me. I've been reading a lot about PWN in the military (very rare) and it does not look good for me. VA classifies N with Epilepsy and you have to have a particular number of seizures to qualify for VA disability. They base your percentage on the number of seizures you have per week. I don't have cataplexy (so far) so I guess I don't have seizures. I'm making myself more sick over all of this.

I used to be a good soldier. This is me in 2006. None of it matters now.

Is there anyone else out there who has experience with the military, VA, and narcolepsy? Nobody seems to be able to tell me what might happen and I don't want my family to suffer because of my problems.

[SleepyMe]

I'm an over the road truck driver. What oher job can one get away with taking multiple naps during the day? I've been doing it for 13 years and just recently got diagnosed with N unintentionally. I still have my CDL on this day even after the insurance companies and such got a little freaked out. My doctor argued I got this far safely without medication, and that I'm perfectly capable and responsible enough to continue driving.

Before driving truck I've tried various other job and failed miserably. I once took on a job operating a tractor and tilled big unoccupied fields to make for sport parks...unsupervised as well. It was a great job, it would take on average 45 minutes to complete a run, then I would turn around, set my front tire in my first runs rut, set my portable alarm clock and go to sleep...LOL The tractor would move at about 2 miles per hour, worked out great for 3 months until I got caught:-S I also got a job die casting. Although the pieces being casted came out much better if the machines were run on manual settings, being the night shift and not to many people around, I'd periodically set it to run on automatic and have a brief 10 minute standing up nap too.....until again...I got caught:-S LOL

A friend who drove truck knew of my uncontrollable desire to sleep and was a truck driver himself at the time and convinced me that would probably be a profession of which I should seek. I did, and today I'm still driving and became extremely successful at it.

[napnow]

I am a SAHM.... a stay at home Mom. I have a BA and a MA in medical anthropology. I have worked for the Missouri department of health, for an independent research company, I have worked in a pathology lab as a histotechnician (making and staining slides for the pathologists to read), worked as a matter/framer of art, and most recently as a deli girl at the local grocery store. They would happily have me back at the deli, and I did like it (it passed the time anyway) but I am afraid it would be unfair to go in with my "list of demands"... "I can only work when the girls are in school, I can't work if there is a snow day, I need time off for doctor appointments and school appointments, and oh yeah... don't give me too many hours because I get really really tired."

If there were only a job that has uber-flexible hours, something that would be contributing to society, something that would give me a sense of purpose and actually use my brain, and pay of course. I am a smart, ethical, hard worker. Sighhh.

I am looking into volunteering at the school. Maybe I will take a class of some sort... ballet, finance, foreign language....

Thanks for posting. We sure have a bunch of intresting people here!

~napnow

[Eumenide]

I am an RN at a university teaching hospital on a telemetry unit for patients who have had heart and lung transplants, and/or cardiothoracic surgery. I work fast and furiously for 12-14 hours per shift.

The interesting thing is that I was symptomatic for 20 years before I was diagnosed, and I had already developed many coping mechanisms in order to remain functional and had chosen a career that would keep me moving on my feet because I knew that a desk job would quite literally put me to sleep.
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[Toph4er]

Currently, I'm a student at a University, but eventually I hope to be a sleep doctor and musician lol.

[psocoptera]

I coordinate advisory groups of medical researchers as part of a larger project. It's really interesting most of the time, but in the summer and winter holidays, when a lot of people are on vacation, it is extremely boring. Boredom is the worst thing that can happen to me in terms of controlling my symptoms. Deadlines and emergencies are when I do my best work. Hopefully, meds will help me even that out a little bit.

[wenwest]

I'm an operating room RN. Worst time of day is the afternoon. Most difficult type of surgery is laparoscopic because the lights are off and depending on the surgeon, it can last for hours. I'm able to sleep now at the hospital after I clock out if I feel unsafe to drive home. Just get an empty stretcher, lie down and close the door in a pre-op room. The dept. closes at 3pm and this is a lifesaver for me and I believe if I wasn't able to do this, I would not be able to get home alive. I have an understanding boss and after working other places where I was ridiculed and written up, this is a real God-send.

[ejohnson22]

I am a college student and I get through my day of classes and work by sleeping 7-9 hours at night and taking a 30 min nap in the afternoon. I also have "cool down" sessions where even if I am not taking a nap, I am at least sitting down and doing nothing for at least 10 min at a time. Some nights have sleep up to 11 hours, just depending on how busy my day was the night before!

[Bafflegab]

Nurses are the real God-send. Proof? The nurse cap.

The first nurses in North America were nuns of the Roman Catholic nursing order, The Hospitalières. After arriving in Quebec (Canada, for those of us who are geographically challenged) from Europe in 1639, they introduced the first formal apprenticeship training in nursing in North America. These nursing nuns had no special headdress for nursing, so they wore the coifs (the picture on the left) that were part of their habit. The coifs eventually became the nursing cap (shown on the right) that was made famous by such famous nurse luminaries as the dastardly Nurse Ratchet who lorded over those who dared to fly over the cuckoo's nest and Diahanne Carrol as Julia, the sexy single mother of the television show by the same name.

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[ShannonIsSleepy]

I am an RN in an Adult ICU, day shift, full-time. Sometimes it's a struggle to concentrate when it's busy.

What type of work do you do?

I am a 43, Female. I draw disibility for Narcolepsy and I substitute teach about 2 or 3 days a week.

[Mirianda]

I'm an executive assistant for now. I'm on a contract but I feel so low... I dropped Cegep (college) When I know I have the brains to go far. I wasn't diagnosed before my 2nd term I tried my 3rd term but I was too depressed to push forward. I am taking accounting classes at night after school but its killing me. I feel exausted even with my medication and I don't know how I will cope for the rest of my life. I sleep at least 8 hours a day. I read some stories and you all seem so strong! The other part of me is the one doing all the research for narcolepsy and wants to start a foundation and wants to go to school to raise awareness in students and teachers. Probably next year (2010) I will start doing the presentations. I am still gathering information and I still need to get a response from the schools of they will permit me to go to their schools and raise awareness.

[Rob]

Right now I'm a C-130 engine mechanic in the air force.(proally not for too much longer.) I'm also in college pursuing a B.S in criminal justice with a concentration on forensics. more than likely i'm gonna get medically discharged from the air force. when that happens i'm gonna finish my degree and become a CSI. alot of ppl have told me i won't be able to be a law enforcement officer but i'm determined to not take no for an answer. so when i get a medical discharge from the air force i'm gonna go and apply at every police department until i find one that will hire me so i can get my foot in the door. then when i finish my degree, start working as a CSI ASAP. I'm new to this forum and to N. I was diagnosed about a month ago and i just started taking Nuvigil and its been pretty helpful but i'm still fighting back sleep occasionally. I really look forward to talking to and getting to know everybody and becoming a part of this close knit family.

[amazingracie28]

Right now I'm a C-130 engine mechanic in the air force.(proally not for too much longer.) I'm also in college pursuing a B.S in criminal justice with a concentration on forensics. more than likely i'm gonna get medically discharged from the air force. when that happens i'm gonna finish my degree and become a CSI. alot of ppl have told me i won't be able to be a law enforcement officer but i'm determined to not take no for an answer. so when i get a medical discharge from the air force i'm gonna go and apply at every police department until i find one that will hire me so i can get my foot in the door. then when i finish my degree, start working as a CSI ASAP. I'm new to this forum and to N. I was diagnosed about a month ago and i just started taking Nuvigil and its been pretty helpful but i'm still fighting back sleep occasionally. I really look forward to talking to and getting to know everybody and becoming a part of this close knit family.

Good Luck-hopefully your persistence will pay off! Welcome aboard, good to meet ya

[Mirianda]

Good luck Rob with getting the job! I have a job interview today at 6pm after work for a more stimulating (and better paying) Job! Since I passed my accounting classe I would be an accounting clerk for a small company... But we were supposed to learn how to use Simple Comptable (an accounting program) but the teacher didn't really know how to use a computer... So he didn't show us and I have this test tonight... A practice test on Simple Comptable! I am really stressed... I REALLY REALLY REALLY want that job! First it seems stimulating (so I will be less likely to go in a daze) It is WAY closer to home (10 minutes by car) and has a better pay (14$/hour for 40 hours) and most important I could grow with the company! Which would be reassuring! Wish me luck!

[amazingracie28]

Good luck Rob with getting the job! I have a job interview today at 6pm after work for a more stimulating (and better paying) Job! Since I passed my accounting classe I would be an accounting clerk for a small company... But we were supposed to learn how to use Simple Comptable (an accounting program) but the teacher didn't really know how to use a computer... So he didn't show us and I have this test tonight... A practice test on Simple Comptable! I am really stressed... I REALLY REALLY REALLY want that job! First it seems stimulating (so I will be less likely to go in a daze) It is WAY closer to home (10 minutes by car) and has a better pay (14$/hour for 40 hours) and most important I could grow with the company! Which would be reassuring! Wish me luck!

Good Luck with your interview...hope it goes well for you!

[Rob]

Good Luck on your interview! I just got out of my appointment with my on base doctor about N, and i ask his personal opinion about what the air force is gonna do, and he thinks that they are gonna medically discharge me. Oh well! I know its not the end of the world. oh and thanks i really do appreciate all the support, and it goes the other way too. if anybody needs to talk or vent I'm a very good listener.

[Mirianda]

Update on yesterday... Didn't go so well... But I tried my best and I am in the top 3! I will know friday if I am the chosen one (haha) 2 hours of testing that is a heck of a long time for a small business and a not SO great paying (but still not too low either) . It was long and at the end I knew I had to "give up" because my brain was starting to be in a haze again (no concentration) so the employer said that he will send my file with two others to the other boss and the other boss will choose between those... My disadvantage was that I had absolutely no idea of how Simple Comptable worked and 75% of the test was on Simple Comptable *bummer* Also my written French isn't perfect (too many rules with too many exceptions!) So I will update on this Friday but... I don't think I will have the job... I am extremely charismatic and that is usually what wins me a job. The other boss won't see that Oh well I will keep trying