156 replies to this topic

[bosoxchic2004]

I work for the state as a social worker that works with children in foster care. It is extremely difficult at times to avoide the sleepiness. I have a very stressful job that does effect my narcolepsy. I do take medication, because I have to drive often during the day. I tried to just take naps, but with my job it I don't always have time. As I get older, I feel the narcolepsy is getting worse. It does help to know why I am tired all the time, but narcolepsy effects all parts of your life.

[Shambo]

Before diagnosis I worked at a tanning salon. I worked short early evening hours and usually with another person. As people started quitting and no new people were getting hired I worked longer shifts by myself. Because I wanted the hours I would work Saturdays , all day 8am- 6pm by myself , with out breaks ( I don't know how my employer got away with that one) It would always be very slow until about 11. I would turn the door chime on super loud and sit back in the office with the light off and bring my pillow and sleep. It would be the most horrible jarring awakening when that chime would go off and I would stumble out of the office and have to help to people hahaha.

I stopped working for a year. I was diagnosed during that time. I got a job in an office for the school district. I had semi flexible hours, the later I could come in the better, but it became to much to have to work the 30 hours required plus school so I quit. I am lucky that I still live with my mom and my live-in boyfriend makes pretty good money and supports me.

[Chuck Z.]

I've been on disability for the past two years. Prior to that, I was a geek at a large Monopoly in Redmond Washington for 13 years. I guess I am still a secret geek, though not nearly as geeky as before.

Anders is a god! I too am in IT (Worked for the pharma molecule company for 16 years). Just recently I got "laid off" as the company thinks outsourcing to India is cheaper . My condition has been for the most part managable, but for the last couple years, I'd find myself waking up at my desk at least half a dozen times a day and dozing off in long meetings that I was simply a spectator for. As things have progressed, I am second guessing returning to IT because my attention span is getting shorter and shorter -- or should I say, my automatic behavior happens more and more frequently. Folks have admired my technical programming skills and have said countless times, "I bet you can code that in your sleep" -- uh, yup, if they really understood the truth! ROTFL OMG, some of my automatic code was funny to go back to, but soooo frustrating!!!

[Julie A]

I am a Medical Assistant, although currently not working. I have been in dermatology for 6 years and truly love it. I left my position in February and was told that I always have a place in the department. . . that was sweet. As soon as my treatment is effective enough, I will go back. Honestly, not working right now is I think worse for my N! I don't fight my naps, just give in and sleep for a long while. Although my sleepy clock has always been screwy, it's even worse now. And I find myself napping then waking up starving, eating, and then being so tired from eating that I fall asleep again. In 2 months, I have gained 15 lbs!
I also am a proud mother of 2 beauties, ages 3 and 7, a job in itself.

[Toph4er]

Julie, did they make accommodations for you when you were there? I know from my year off of school before I returned that having something outside home to do on a daily basis has really helped. Sure, kids are a lot of work but you need to get out on a scheduled basis. I suppose that goes for everyone here. You may be to tired to do something now, but once you can get yourself past the hump (which can be a while, I know), it will help you. Just make sure you have an understanding employer and don't start out too hard! (You know, like pre-calc after a year off from math...)

Chris"Toph4er"

[Julie A]

Julie, did they make accommodations for you when you were there?

No, they didn't really know about my N. I mentioned it to my boss just before I left in a full out screaming match in her office. But she is not the one who wants me back. It's some of the physicians, and their above her head so I won't say where she can kiss . I will be in another facility so as to avoid working for her. Technically, I left the department for a better position in August. It was this employer who thought I was a junkie due to my symptoms. When I left abruptly in Feb, I realized I can't work until the N symptoms lessen. I also hope to go back part time before jumping in to full time work again.

However, I will be informing them once I go back. Any ideas on when a good time to bring this up is? Do I have to tell them before I am hired? I'm not really sure how to put this to them.

[gurlzylla]

Julie, I would be honest and up front about the reasons behind leaving your job. If your prior employer had a problem with Narc, perhaps you could disclose it and assure your new employer that you have been thoroughly evaluated, dx'd and that you are receiving treatment. I don't see how they would disapprove of your candor. I CAN see how they would get frustrated they found out about the narc. later!

[Julie A]

Julie, I would be honest and up front about the reasons behind leaving your job. If your prior employer had a problem with Narc, perhaps you could disclose it and assure your new employer that you have been thoroughly evaluated, dx'd and that you are receiving treatment. I don't see how they would disapprove of your candor. I CAN see how they would get frustrated they found out about the narc. later!

Thanks for the advice. And I guess since I have worked for these docs before and they do like me I kin of have 1 up on the N!

[gladtoknow]

I work f/t in a small financial planning office. Then I go do my 2nd, main job - f/t single mom!!!

[Kimberly]

I've worked for a Fortune 25 healthcare company for the last 6 years. For the first 4 I was a Trainer, and the last 2 I've been a Training Manager.

The stress from the level of performance required in the Management position was just too much with my N not being regulated yet, so it sent me out on 2 months of medical leave. Now I'm back working 75% of the time writing Documentation and Policies & Procedures. They also have 2 people doing the old job that I left!!

[greatbig47]

I'm the web guy for the Narcolepsy Network. My goal is to get every narcoleptic on God's green earth sharing the love on this very forum. What can you do to help?



Say, while I have your attention, have you entered the contest to win
Penelope Przekop's book "Aberrations". How many great novels have YOU read were the main character is narcoleptic? Enter the contest, and win a personally signed first edition!

Click here for details

Sorry if it seems like I got things off topic, but I really didn't if you think about it. I'm Stu. I'm your friendly, neighborhood web guy. It is my life. It's what I do.

(okay...we can't be serious ALL the time, right???)
Now...tell us what you do for a living

love & prayers
-Stu

[doscious12]

I have currently applied for SSD and been denied twice.I am also going to ITT on line for crimnal justice.I should be recieving my highway patrol package pretty soon.

[Mike M]

I am a forty year old, high school English teacher. Since something had been massively "wrong" since the fall of 2001, I asked to go to part-time status for the 2007-2008 school year. Just before the year started, I learned that the "problem" was narcolepsy, so I look pretty smart for going to part-time. The courses I taught last year were a terrible fit for me (as a person and a narcoleptic), but this year, I continue my part-time employment and am working in a great environment.

[maggie]

For 18 years I was a medical assistant got "burned out" and started working in the school where my kids go. I was a secretary and classroom aid for about two years. I learned how to drive a bus and finally found the job for me and the pay was waaaay better than the medical field so I took a job as a school bus driver. I've been driving a bus for about 5 years. After 10 years of being sleepy I was finally tested. I was dx'd with N. Driving a bus requires random drug testing and I was prescribed Adderall and of course that shows up in the urine so when I told the MRO why I take it all hell broke loose. I went through four months of having my medical records reviewed, being told that I have to see a Dr. my employer chose (to either confirm or dispell the diagnosis) and finally loosing my job. I was offered a job in the middle school and now I'm the hall monitor. I like it o.k. but I lost $9.00 an hour because the law states that they can put me into any job that has an opening and I get paid what that job pays, yep even if it is less pay!! I could've been let go.(I made over $20.00 an hour when I drove)! I loved my job and miss is terribly. It will be a year on November 1st since I've driven a bus. Not sure hall monitoring is my niche but it's a start. I'm happy to be employed and actually like working with the kids. I do get sleepy and have yet to brave the nap time at work, I fear they will catch me and use that to get rid of me. I'll wait for any opening in the district that I'm qualified for and maybe my niche I will find. Thanks for listening.

[too exhausted]

I don't do anything. I used to be a concert lighting designer and engineer, I was wonderful at that, but once I quit the "drugs" part of my Rock n Roll life style, I have not been able to function properly. LOL. Who knew street drugs actually had benefits! (I'm joking of course! don't try this at home kids!)That was 8 years ago... I am on disability right now but I am hoping to find something that I can do at home to make a decent amount of money. $623 a month doesn't go far... I have tried college three different times and cant make it through even part time, Does anyone have any ideas for me? I'm totally stuck!

You do do something. You cope with your N everyday without drugs. That takes a lot of doing. You have kept trying your hand at college therefore have tried to get back to work. I am on disabilities like you and have learned to accept that I am on this until (and it will happen) there is a cure or mediaction that allows me to function without the dreaded side effects. I used to be a qualified beauty therapist, it took three years of full time college to pass my exams and several courses throughout the years to keep up to date. Like you I was told that I was good at my job and loved it. But now I concentrate on each day as it comes. You didn't ask for N it is a small part of you. It stops us from working but there is more to life than work. Work isn't who you are or defines you. It is how you live your waking hours that is important. I used to get mad at people who thought that I was a 'lady of leisure' bumming off my partner. This made me stressed and in turn made my N worse. If they won the lottery they would give up work. I used to value myself by how clean the house was, how much gardening I did, how I decorated every year how many hours I worked. I think we put too much emphaise on what we do and how that makes us fit into todays society. N doesnt rule me but I except my life has changed because of it and I deal with each day as it comes. I say it is my job. People have bad days at work, thats my bad day in bed all day. People at work get evenings and weekends off, that's a day when I can leave the house.
I keep in contact with friends over the phone rather than going out on an evening. Money is a hard one as when we haven't got it life is so much harder. I know money makes the world go around but you can't put a price on your health and you are doing the best for your health. My last two jobs have made my symptoms so much worse as you push yourself to the limit then your body can't stand it any longer and it breaks down. As this has happened twice to me now and the symptoms of my N & C haven't eased from giving up the jobs it would be impossible for me to do any kind of work. Don't put yourself down.

[Mike M]

too exhuasted,

I thought that was beautifully said. I teach high school and moved to part-time employment before I had my diagnosis. While my meds make my life more manageable, they do not allow me to "do what I want." At the same time I honestly believe that my life is richer now because I have had to prioritize my activities. I can only put energy into the handful of things that are the most important to me. Marcianna, I wish I had some brilliant insight for you, but I do not. Do treat yourself kindly. You have done nothing wrong, and your health IS too important to force yourself into situations that will only serve to increase your stress level. I encourage you to do what you love. Hopefully, some insightful individual will realize that you deserve to get paid for this thing that you love.

[sleepless sleeper]

I have several degrees, worked a professional career. Now, a stay home mom that can barely keep the house clean and can never go back to work because of N. I can't beat it (the N). Doctor said that I'm disabled but I won't allow it to be written in my record. He's a great guy. But I do know it's true and I would be happy with the stay at home mom title if only I could excel at it. It's been the most rewarding job, which makes it so difficult to accept the fact that I really fail at it miserably every * day. I should have allowed my doctor to write up my disability, though, because now I have not worked enough recent quarters (per Social Security) to get disability, and I know that I will never be able to again.

I barely made it through school. I was prioritizing like Mike M said, but I didn't know it. I'd take easy classes at the same time as hard classes to level out my gpa. There were times that I would just have to accept a "C". Somehow, I made it through while working.

Once I did start my career, there were times that I would "disappear" for 15 -20 minutes. I could usually be found in a bathroom stall sitting on a toilet - not for it's purpose, but as a seat to sit on while I rested my head on a stall wall or toilet paper dispenser. During lunch hour I would close my door and use a three ring binder as a pillow and crawl under my desk and pray that I would be "up and at 'em" within an hour. Alarm clock? Forget it. I may or may not respond.

If you can't go to school even part time, then you just can't. I know that there is no way that I could take a class for anything. I took a stretching class (no homework no reading) and still could not make it to class all the time. I had a yoga instructor tell me that if I could not come on a more regular basis than I should not come back at all. Can you imagine? If you take college classes, then you are trying to better your position in life, but you hopefully do not look at it as trying better yourself as a person. Degrees usually do help you earn more money and also to get what is usually considered a better job. But, there are some good jobs out there that don't require degrees; some of which can be done from home. If your N is really bad and if you don't have kids -my personal pov, kids have made my life great, but my N affects their lives in a terrible way - then don't have kids. You don't have to be as worried about providing for a family or about having a better paying job. Your responsibilities are much lower. It really sucks living my life this way. It really sucks seeing my kids cry for me to stay awake. We can't even get them a dog because I know I will end up having to care for it, which means that it would starve in the back yard with no exercise. I can hardly keep my old cat's litter box clean. If you are at a point in your life where you realize that N affects your life to the point of disability, then you may have to accept this and just do the best with what you now have. I find myself thinking of "I used to.." or "if only I could just get the energy this one time.." and I'm tired of telling myself that I can't allow myself to think these things. It's only natural for a human being to want to better their lives, but at this point, what does make your life better? If you are able to go to school, graduate, get a good paying job, what then? Will you be so exhausted that you hate your life? Work around it now and be totally honest with yourself. What can you live with? Can you live with making less than you would if you earn a degree? If so, you may find yourself happier in life and better able to cope with N. This alone is worth alot.

[Lais02]

I have several degrees, worked a professional career. Now, a stay home mom that can barely keep the house clean and can never go back to work because of N. I can't beat it (the N). Doctor said that I'm disabled but I won't allow it to be written in my record. He's a great guy. But I do know it's true and I would be happy with the stay at home mom title if only I could excel at it. It's been the most rewarding job, which makes it so difficult to accept the fact that I really fail at it miserably every * day. I should have allowed my doctor to write up my disability, though, because now I have not worked enough recent quarters (per Social Security) to get disability, and I know that I will never be able to again.

I barely made it through school. I was prioritizing like Mike M said, but I didn't know it. I'd take easy classes at the same time as hard classes to level out my gpa. There were times that I would just have to accept a "C". Somehow, I made it through while working.

Once I did start my career, there were times that I would "disappear" for 15 -20 minutes. I could usually be found in a bathroom stall sitting on a toilet - not for it's purpose, but as a seat to sit on while I rested my head on a stall wall or toilet paper dispenser. During lunch hour I would close my door and use a three ring binder as a pillow and crawl under my desk and pray that I would be "up and at 'em" within an hour. Alarm clock? Forget it. I may or may not respond.

If you can't go to school even part time, then you just can't. I know that there is no way that I could take a class for anything. I took a stretching class (no homework no reading) and still could not make it to class all the time. I had a yoga instructor tell me that if I could not come on a more regular basis than I should not come back at all. Can you imagine? If you take college classes, then you are trying to better your position in life, but you hopefully do not look at it as trying better yourself as a person. Degrees usually do help you earn more money and also to get what is usually considered a better job. But, there are some good jobs out there that don't require degrees; some of which can be done from home. If your N is really bad and if you don't have kids -my personal pov, kids have made my life great, but my N affects their lives in a terrible way - then don't have kids. You don't have to be as worried about providing for a family or about having a better paying job. Your responsibilities are much lower. It really sucks living my life this way. It really sucks seeing my kids cry for me to stay awake. We can't even get them a dog because I know I will end up having to care for it, which means that it would starve in the back yard with no exercise. I can hardly keep my old cat's litter box clean. If you are at a point in your life where you realize that N affects your life to the point of disability, then you may have to accept this and just do the best with what you now have. I find myself thinking of "I used to.." or "if only I could just get the energy this one time.." and I'm tired of telling myself that I can't allow myself to think these things. It's only natural for a human being to want to better their lives, but at this point, what does make your life better? If you are able to go to school, graduate, get a good paying job, what then? Will you be so exhausted that you hate your life? Work around it now and be totally honest with yourself. What can you live with? Can you live with making less than you would if you earn a degree? If so, you may find yourself happier in life and better able to cope with N. This alone is worth alot.

Your description of taking courses is very familiar to me. I'm struggling to complete my degree. My only advice is to not settle for medication that doesn't really help. Keep looking!

[AssociatedWithFire]

Hi everyone, I am a Solar, Geothermal and Radiant heat designer and installer. I work for myself wich is the only reason I am still employed. I support my wife/stay at home mother of two girls (2 and 4yo). I love what I do but am so scared I am going to lose everything I have worked for. I have spent the last 6 years of my life (Im 32) devoted to doing the best job I could possibly do. I absorbed all the information I could get from any contractor I came across. I went to every factory equipment traing school that was offered. I researched anything I could think of that would help me in my field (Radiant Heat). After all this hard work I actually feel like "I have made it". My current clients are well off and building 4500SqFt houses or larger and they have asked for me by name. I havent advertised in over two years and am known through my reputation via word of mouth. 4 monthes ago I was diagnosed with Narcolepsy with cataplexy. As if that wasent enough, I have developed insomnia which last for up to 4 days at a time. when I do fall asleep I can easily sleep for 48 to 54 hours (probably longer if I didnt have to pee). I am doing everything I can to hold my buisness and my sanity together. When I go through "up" periods I work at night (New construction allows this) when all the other contractors are gone so I can focus better, and work untill the contractors start to show up again, then I do the running around this feild requires like going to supply houses and engineers offices. Then I go home and make the many endless phone calls that seem to need to be made every day. when Im in my office I either work on paperwork for the job I am on, or I do some form of studying and research on the internet. Than as the sun goes down I prep to start all over.
This is such a crappy way to live. I dont get any time with my wife and kids. Im so scared If I change my routine I will fall behind and my reputation and carrear will both suffer. I wish I could find a position with some company and have a desk job but where I live that is highly improbable. The stress of completely supporting my family and continually working is immense. With my condition rapidly getting worse....I am scared.

[chimbakka]

Hi everyone, I am a Solar, Geothermal and Radiant heat designer and installer. I work for myself wich is the only reason I am still employed. I support my wife/stay at home mother of two girls (2 and 4yo). I love what I do but am so scared I am going to lose everything I have worked for. I have spent the last 6 years of my life (Im 32) devoted to doing the best job I could possibly do. I absorbed all the information I could get from any contractor I came across. I went to every factory equipment traing school that was offered. I researched anything I could think of that would help me in my field (Radiant Heat). After all this hard work I actually feel like "I have made it". My current clients are well off and building 4500SqFt houses or larger and they have asked for me by name. I havent advertised in over two years and am known through my reputation via word of mouth. 4 monthes ago I was diagnosed with Narcolepsy with cataplexy. As if that wasent enough, I have developed insomnia which last for up to 4 days at a time. when I do fall asleep I can easily sleep for 48 to 54 hours (probably longer if I didnt have to pee). I am doing everything I can to hold my buisness and my sanity together. When I go through "up" periods I work at night (New construction allows this) when all the other contractors are gone so I can focus better, and work untill the contractors start to show up again, then I do the running around this feild requires like going to supply houses and engineers offices. Then I go home and make the many endless phone calls that seem to need to be made every day. when Im in my office I either work on paperwork for the job I am on, or I do some form of studying and research on the internet. Than as the sun goes down I prep to start all over.
This is such a crappy way to live. I dont get any time with my wife and kids. Im so scared If I change my routine I will fall behind and my reputation and carrear will both suffer. I wish I could find a position with some company and have a desk job but where I live that is highly improbable. The stress of completely supporting my family and continually working is immense. With my condition rapidly getting worse....I am scared.

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