156 replies to this topic

[LynnH]

I've been a public librarian for 14 years, and I'm getting ready to transition into an a position in senior management in a library. Up until my diagnosis (~ one month ago), I was a little concerned about how effective I would be able to be, considering the lack of motivation and concentration I thought were tied to ongoing management of depression, but I felt pretty certain that the excitement of a new job and focus on the area in which I feel most well-suited would help me overcome those issues. Now that I know it's narcolepsy, I'm worried that my EDS will get continually worse, and that I'll develop cataplexy, and that the combination of those things will make me less and less capable as an administrator. Strange, isn't it? I don't feel much different now than I did in May -- in fact, the scheduled naps have made a big difference for me -- but knowing it's chronic makes me anxious.

Due to budget cutbacks about a year ago, I got transferred from managing Reference to the Human Resources department to become the library's Training Manager. I've learned all sorts of things about legal interviewing and ADA and reasonable accommodations and FMLA, never expecting them to come in handy as much as they have in the last month!

[barkatt]

I am an office manager for a union, I'm a lone wolf as their only employee. Benefit is that I do it all and can work in a nap if I need it and still do the job very effectively. I was diagnosed last week with N but no C for which I am grateful. I do have the hallucinations and paralysis though which is scary. I just started provigil yesterday and I was trying to take a nap after only 1.5 hours!! I was hoping it would work right away. Then I couldn't fall asleep last night. Does anyone else with N have trouble going to sleep at your regular bedtime? Its like I have insomnia but am sooooooo exhausted at the same time!

[danmar]

I am a small animal veterinarian and work part-time. I worked full-time up until 2 years ago. I have been practicing about 11 years, and was diagnosed with N and mild C about 6 years ago. I have been having symptoms for about 20 years. Symptoms hit me really hard my second semester of undergraduate - I started sleeping about 18 hours a day. I made it through veterinary school somehow (I had absolutely no social life because I was asleep when there was any free time). I self-medicated with caffeine and nicotine until I was finally diagnosed and put on Provigil. I have been on SSRIs since my symptoms first started (although it was always for the wrong diagnoses - chronic fatigue syndrome, depression etc.). I do very well now as long as I keep busy. Whenever there is a lull at work, and I can't find something else to do, I usually fall asleep, but my employers are aware of my Narcolepsy, and don't mind since it doesn't interfere with my performance. I consider myself lucky because I know how hard it is for a lot of you. I have a supportive husband, family and co-workers that make it so much easier for me to cope. I also have good insurance (through my husband's work) that pays for my medication - I wouldn't be able to function without it.

[2tired2bNormal]

I am the Secretary & Bookkeeper for a public Elementary School. I take care of 850 Students, 2 Administrators & 140 Staff Members - as well as approximately $300,000.00 in Cash, yearly! Haven't lost a penny of it yet! Although I keep telling them, maybe they shouldn't let me play with money! lol

I was reading what everyone else does for a living, and was giggling when I saw the Pre-K/K Teachers posts! I have a "crash couch" in my office incase I need to use it - but I often tell the Pre-K/K Teachers to save me a mat!!!

[doinmdarndest]

i am a construction laborer.

-doinmdarndest

[Gabby]

Am a manager in an 'accounting/HR' office at my company. (That's another way to say 'I run the payroll office' LOL) We are smack in the middle of both those areas though. Have to make the numbers match up while following policies too. Nothing is black and white in my office and you don't want to mess with people's money. We have about 4000 employees that range from maintainance to engineers. And I sometimes need to coordinate with other companies besides mine. I love it. I'm good at it. I'm tired. LOL I am just beginning to have trouble with one of the big bosses though. But most of the time, everyone else is great and we work on solutions to be sure that I have the opportunity to continue to succeed.

[Linna]

I AM AN ADMINISTRATIVE ASSISTANT

[Tired while teaching]

I am a first grade teacher. I have lost the joy of teaching because of my chronic fatigue. Have been diagnosed with bipolar over 10 years ago. Waiting to see neurologist. Afraid I won't be able to keep teaching. Memory loss and brief nodding off are ruining my life. Wish I could just quit. Hoping I am diagnosed. Maybe will get some help. Husband doesn't understand.

[ImSleepin]

I work retail. For the longest time I was only working 7am-3pm, which left me exhausted. Now that we have another supervisor with my same position, I get to close sometimes. That means working 3pm-11pm.

I work 40 hours a week, because I'm a supervisor. Even with stimulants, I sometimes just need my afternoon/evening nap. Sometimes I'm not tired enough to nap in the afternoon (or I try to abstain) but I feel too lazy to actually get anything productive done.

If I were one of the regular managers in the store, I could work mid-shifts from around 10:30-6 or so I do like having the occasional closing shift.

[crunchberries]

I'm in a job training program right now, but I take surveys online as a side job.

[Phi]

I'm a children's entertainer (birthdays, workshops, stage shows,after school programs) for the local franchise of an international science entertainment/education organization. Basically, I teach science in a fun and interesting way. I am also on RSDI disability, as this job is only 1 to 5 hours per week. I choose my own hours based on how I'm functioning. It's basically a chance to get out and do something useful. I'm great at what I do, but driving to venues is nerve racking. I find timing my meds, coffee, and even cigarettes keep me alert on the road. No accidents in over 10 years, and that one was not due to N. In the past, large doses of ritalin got me through my shows. Now, I'm on nuvigil and I like how I feel much better (less "speed freak" feeling, racing heart, teeth grinding, etc.). I don't know if I'll be able to do my job forever, as my cataplexy is worsening and it'd be awful to be up on stage blowing up something or mixing chemicals and have an attack. Keeping my emotions in check, practicing my shows a lot to stave off anxiety..these help with the cataplexy. I can usually tell when I'm having an off day, and do not perform. I have colleagues who have, once or twice, taken a booking for me on a "bad narcolepsy day" I tend to rest up before my shows, and allow a lot of time to recuperate after.

[NetiNeti]

Oddly enough, a mental health counselor!

[whitney037]

Licensed Practical Nurse-Inpatient Psychiatric Hospital

Going to school currently to be an RN

[steviewonderzzz]

I was an engineer aboard merchant vessels. The last ten years as a chief engineer. I would work on board ship for 6-8 weeks and be on vacation for 6-8 weeks. No commuting as I lived on the ship, my meals were made and bed was made by the stewards dept, so all I had to do was focus on maintaining the ship and motivating the people that I managed. I could stay up for 90 min, and sleep for 60 min round the clock. I would do filing at 10 pm. write letters at 4 am. My bunk was six steps from my desk. I am insanely intuitve, the machinery would almost "talk" to me on how it was behaving. When a problem occured with no immediate answer, I just took a nap (in reality I would experience a sleep attack) and when I woke up I would know the solution! Taking naps my entire life I figured that naps were no big deal, although I hid them very well for the first 20 years of my working life. It took 10 hours to fuel the ship, I would take two or three naps during that time, but I was the Person in Charge of the fueling process. I eventually reallized (with some pointing out from a friend) that if I ever had an oil spill the Coast Guard (as well as 10 other govt agencies) investigations would uncover my naps and I would go to prison. I responsibly but regretfully quit the career that I loved by taking a sleep study,becoming diagnosed, and forcing the Coast Gard to take my License and seaman's papers. Nobody wanted me to retire, not the company that I worked for, not the labor union I belong to, not my pension plan, not the US Coast Guard, not the divorce judge, not my divorce lawyer, not my family. It has been ten years since I retired, and I am glad of my decision. I qualified for social security imediately but my pension took another 5 years because of a sociopathic ex wife (4 year marraiage and she does have a personality disorder) would not sign off on the retirement papers. I retired at 45, and have felt a little guilty for not working and not adding to the GNP. I take classes at the local JC that is 12 min away, sleep in my car 30 min before the class and sleep for 30 min in my car after class, am dizzy during the last 30 min of class. I take one class per semester and always get an A. I tried taking two classes one semester but I could not keep up to get an A in both, so I had to drop one. How in the world do I fit into a real world job having these characteristics?

[SuperJames]

...I was a geek at a large Monopoly in Redmond Washington...

What a coincidence! I currently am a geek that makes (and has made) almost his entire living using said large monopoly's products!

[flutterbye_xo]

Hi! I'm 24 (almost 25) and a third year pharmacy school student. I am thrilled to know some of you are heathcare providers. Healthcare is stressful, you have to think on your feet, and you can't make mistakes or be foggy.


I was just diagnosed with narcolespy over the summer but it didn't really hit me until I had a good pulmonologist look at my sleep tests last week. He strongly pushed Xyrem and when he said it was the standard of care I was like $%&# (I didn't read the new post rules so I figured that would be sufficient). I was like dude that drug was in the slide set that was named "Drugs of Abuse & Addiction" with "for narcolepsy" in little letters at the bottom. I might talk to a toxicologist about Xyrem. Now I'm like $%&# I obviously picked the wrong profession, but it's not like I can go back now (not to mention a truckload of loans). So I am THRILLED to know some of you are heathcare providers. Maybe I'll be a better pharmacist because of this (well that's what my physician said...good guy).

Anyway, I have a laundry list of concerns, mainly how do I get my reputation back to where it should be, how am I going to be a pharmacist, and how am I going to be a mom someday? My peer/colleages and professors constantly questioned my knowledge and reliability because of my sleeping in class and periodic lateness. Luckily I'm a book learner not a class learner. Honestly I don't know how I got this far when I think back except for the fact that I'm stubborn and don't like to quit anything. I can only date my narcolepsy to 8th grade but dang that was 10 years ago. Pharmacists work 13 hour days 3 or 4 days in a row and you have to be on your game at work. There is no making mistakes in heathcare and if you make one it had better be minor. Luckily I don't ever fall asleep on my feet. I'm thinking maybe I can work a part-time job or get a pharmacy job that isn't mainstream (not to mention discrimination or liability concerns). I'll figure it out when I get there.

In the meantime, I LOVED the section about what people say to you. I always get "Good morning princess, glad you decided to finally join us" and my parents just looove to tell everyone about the drool-stains on the living room chair. Oh yeah, I'm the butt of every sleeping joke I know and some I don't. Everyone at school likes to wake me up nomatter where I'm sleeping and take pictures of me in class sleeping. One time I fell alseep on a lab bench chair in the front row looking straight at the professor. I usually fall asleep looking straight at them; makes me feel slightly better. Anyway, I'm ALL about the positive so loved that section, especially the necrophillia one...haha. Kinda funny story. I often get cataplexy right when I'm semi-falling asleep and decide in my mind I MUST get up and lock the door now. I get up, fall down, and then lock the door! For some reason this is funny now. So one time this happened and my significant other happened to be there. He thought I tripped on his backpack and I just let him think that. I was worried because I didn't know what cataplexy was and I didn't want him to think I just fell down and hit my head on something because of nothing. Oh and get this he wants to go to a Haunted House next month. I'm like sure if you want to carry me through it...bahaa.

Ok gtg pass school. Since this is my first post I want to let everyone know I'm the worst speller in the world, except I'm getting better with drugs. I read all the time so who knows.. I'm glad to be a member of this group and look forward to the friendship and support. Shout-out to all you Nashvillians, let me know when and where the meetings are.

[The Dreamer]

Thought I had contributed to this thread...but perhaps I just thought I had.

Anyways...I've been really fortunate so far...

First job...I was a Computer/Research Engineer in Combustion Dynamics (they blow stuff up, we develop codes to reproduce what happened, and then use it to figure out how to blow other stuff up better. Later we helped figure out how to make stuff survive explosions...like ships and sea mines, apc's and land mines, van with fertilizer bomb next to government building....though there were other applications, like building a satellite on earth and then throwing it into space and wondering if the air inside the satellite suddenly being sucked out is going to mess up the delicate stuff inside it. Plus there was a real-time group, that dabbled with vehicle control stations, and I got to do some control systems work (aircraft centric and payload centric type stuff - unmanned aerial surveillance)

It was a largely show up whenever, work to whenever, come in extra whenever type job....I didn't realize how bad it was, until one time the office manager was training the new receptionist...and it was something like, "Hey, there's Lawrence....he usually comes stumbling in after 10:30....unless he had spent the night (or got struck with inspiration at 2am...)

That job last 7.5 years, and ended by getting laid off. The day after thanksgiving....also came home to find the block taped off....16 year girl had been found murdered across the street. Houses for several blocks around suddenly lost their 'for sale' signs...and here I was faced with needing to put one up.

A few weeks later...I was driving up the #1 (Medicine Hat, AB to Calgary, AB)....when I felt my eyelids get heavy and I was out of coffee. So I started looking for a rest stop....when I blinked and found myself at the turn off for the rest stop. Problem....I'm doing 120km/hr...the highway curves to the left. rest stop is after a sharper curve to the right. Can I slow to 30km/hr to make the sharper curve.... never mind...I went through the middle....planted the front bumper into the ditch and flipped the car end over end. While I was watching things go by in slow motion....my big metal empty coffee cup comes flying at me and I have nasty bump on my forehead. (there's also a more annoying one on the back of head, because I'm upside down.) Passerby wakes me up and encourages me to crawl out as car is smoking badly. I spend the rest of the day/evening strapped down for C-Spine precautions....first hospital is muttering about C4/C5....so I get shipped to hospital in Calgary, eventually they kick me out and I find a greyhound bus to get me home. I missed the interview....generally glad that i had.

Eventually land new job.... Software Engineer for Information Dimensions in Dublin, OH....6-month to contract...5 weeks after I start the company is acquired by Open Text (from Waterloo, ON)....6-months turns to 16-months...but I eventually because a real employee, etc.

Gradually, I'm slipping into work later and later...which isn't too bad, since I have my own office and its isolated enough. And, since I'm not contract anymore, nobody stops in to make sure that I'm not putting in overtime anymore.

9/11....I was extra late that morning...sneaking in was strange, because there were lots of people standing in he hallways listening to a radio somewhere and speculating on what's going on. Later somebody gets a TV in and we all stand around it to watch the next plane and the rest of the day unfold.

Later the company moves, and I end up living across the street from work....so that cuts ~30 minutes from my commute to work, etc. Luck out having the right cube to be invisible and/or sneak in and out....even take semi-planned naps in the afternoon. I would fight it coming, even though i know how much better I feel afterwards....I then learned to prop myself upright infront of computer monitor/keyboard and nap....and avoid waking up with Qwertyitis.

And, then dreaded 7.5 year mark came...and I got laid off....though I got to stay on contract for a bit, doing just system administration.... Information Dimensions was an IBM centric shop with HP and then Sun, Open Text was a Sun centric shop...Linux was starting to put enough pressure on some of the product lines. Combustion Dynamics...had been SCO, then Interactive Unix (acquired by Sun), then HP-UX and then Solaris x86 (because management would not support the idea of supporting Linux).

Seems moving to Kansas is where everything went bad....I got a place to live....about 30 minute walk to work. Its supposed to be an 8-5 job with overtime, on call rotation and flex....also we get 22 vacation days a year and 3.7 hours of sick leave per pay period. There's no limit for sick leave accrual...because its to be used for short term disability as well. Can only have a max of 38 days at a time....and I've burned about a month's worse so far. In the last ~11 months...the only use of vacation time has been to see doctors....at least I'm keeping it just under the 38 max so far.

One summer I find myself putting on weight....quite a lot of weight. 50-60 lbs. My BP is kind of high.... after some discussion, a sleep study is suggested. I failed. Shortly after that there's a discussion about when people are showing up to work. Before it was 8-5, at least one person should make 8...everybody else should be in by 9. I'm more of a 10-11, despite pushing my end alarm time from 6:30am to 5:00am (I have 3 alarms...first one was 25 minutes before the last one) I did compress the time to about ~10 minutes...because I've gotten pretty good at find the little off button rather than just whacking the big snooze button... last alarm involves an artifical sun lighting in my bedroom...its still there, but I have since changed the main bedroom light to not be a daylight one). New manager says we should try to have one person in at 8, the rest of us need to either be online by 8 and in the office by 9. Though this was right after I had failed my first sleep study, and he says I can have an extra hour to get in. He tends to be that kind of late in the morning as well.... he's got the health issues he knows about, 4 kids and the health issues he doesn't want to know about. Has commented a few times that he should get a sleep study, but doesn't really want to find out what else is wrong with him.

Slowly things got better....and then things got bad again....and I had my next vehicle accident. I had been interrupted during the night by my on call phone and spending a few hours trying to resolve an issue....slept in a bit and then rode my bike into work. Suddenly I thought I was going to hit a tree...but there's no tree. But, I jammed on the breaks, go flying head first over the handle bars (no helmet) and later bike comes down on top behind me. No broken bones....but a couple months of physio before I get full use of my arm back. Then I notice that the EDS is back and I'm dozing off again.

Oh yeah...before the sleep study and such.....the afternoon napping situation had gotten worse. Forget holding it off a bit until I'm safe to nap....it'll just suddenly happen, and I'll come to....once an hour seemed to have disappeared. I've complained before about this, but having high BP from the free HealthQuest screening at work....was apparently the tipping point to get a PSG.

Then last year....I walked into a first aid box...that was sitting on the floor next to my coffee maker at home....and it results in breaking my middle toe. They have me to PSG/MSLT two weeks later, I'm sure the broken toe or the fact that the room was freezing cold, and I can't sleep with cold feet.... affected the PSG/MSLT results. But even the results that were captured by the PSG, nobody seems interested in. (Like it notes the lack of deep sleep, suggestive of OSA...but OSA findings were 0 OAs, 0 Hs and 0 CAs.....and no interest in helping me get deep sleep.)

I'm still hurting from the broken toe....should be interesting.

But, in Kansas I'm a Senior Unix Systems Administrator for Kansas State University (primarily a Solaris shop, with some Linux). Where, the latest bit of trouble is that because I didn't rock the boat and haven't gotten much in the way of raises, its preventing them from advertising a competitive salary to replace the other Senior Unix Systems Administrator that recently quit. Just as they have trouble hiring non-senior types...even though they are offering 20% more money than I started at. And, the people they've been getting so far are less skilled/competent than me. Which I guess is a good thing....

Feels like I'm probably going to have a job where I can work until I can retire (think coworker retiring a couple weeks ago was the first time that's happened to me)....even if it isn't quite my dream job....used to be to be an electrical/software engineer working in a university medical school somewhere....(I had originally gone after such a job after graduation, but the grant funding didn't come through....) To perhaps a Systems Administrator/Software Developer in the same.... There was an opening for a Systems Administrator at Stanford Medical a while back...but guess not. Each of the 3 have been close enough and quite enjoyable/accommodating.

The Dreamer.

[AmandaR]

I am a middle school teacher. I have a wonderful husband who completely supports me and helps me to make it through. I was happy to find out that there is a reason why I was the way that I was. Sleepy, sick all of the time, flighty and a bit of an airhead. Now it's nice to have some things make sense.

[sleepymomma]

My Dr. told me he would give me a nap note but I find it easier to work 2 pt jobs this way I can sleep as long as I want in the afternoon. My 1st job is early Im up at 5:30am and back home by noon. I really dont think I could do it any other way...in fact I know I couldnt.

I'm an RN on the Adult Behavioral Health Unit. I've had hypersomnia since for over 15yrs. I work PRN and raise my son and he is a full time job! I worked full time on a med/surg unit prior to what I do now and working second shift helps me not have to get up so early. Does anyone with hypersomnia also have insomnia? It seems like an oxymoron but it's very real. I'm tired all day but can't sleep at night. It's crazy!

[Lis]

ok, I used to be an RN. I had to leave after only 4-5 short years of nursing practice in 2001. I've been on disability since. I want to know what kinds of careers are out there for someone like me. I want to go back to school. I scratched nursing out long ago, reconsidered during moments of full wakefulness and alertness, and scratched out out again over and over when full steady symptom control could not be achieved in order to even hold a steady scheduled job, let alone practice safely in the medical field. We are so broke, my husband is out of work and in college full time (he's been looking so hard for work), and I'm trying my best to sell items off on ebay just to pay some bills. This has been the most perfect thing for me as far as scheduling goes, because I can multitask around the clock during moments of wakefulness. I just can't make a good enough income and can't afford to invest financially in more expensive things to sell. Ack! At this point, I'm really thinking I should go for something where I can be my own boss and work my own hours because of this. Problem is, my business skills stink, lol....and it's not really my passion. . I like the arts, but I'm no artist, lol. I love music, but I'm not really a musician. I want to go back to school for something that fits more to my needs and something I actually like, but what????? Any ideas???? I can't work a boring job or I won't stay awake. I can't work a high stress job or I won't stay awake. This so frustrating. I'm 40 years old. Really, what else is there?