156 replies to this topic

[Ermc26]

I work in Insurance Sales. It's fairly easy to get a license, it only takes one 28-hour course here in NY and CE every 2 years. It's nice because it's good money and you can create your own schedule for the most part. I have a very understanding boss and I manage very well as long as I'm able to get out to go to work. It does entail a lot of driving sometimes though, which I know some people are not comfortable with.

[Lis]

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!

lol. yes!!!! if i take any EDS meds during the day, I will have horrible rebound insomnia at night. I do better at night if I take no wake meds during the day. Oxymoron is right. I struggle to stay awake with meds, then struggle to fall asleep at night: It's during those kind of nights that my sleep walking is the worst...by the time I do fall "asleep". Go figure. It's like my brain has a mind of its own, and so do the meds, and they're stark opposites.

[exanimo]

I received my CNA (Certified Nursing Assistant) when I graduated high school. My first job ever was being a live in caregiver for an elderly woman with Alzheimer's. Currently, I work as a Respite care provider for a local Alzheimer's Resource agency. I have clients with Alzheimer's and I take care of them in their homes. It offers a lot of flexibility, Most of my clients are only 4-6 hours. And because none of them are at risk for diabetic comas or anything serious, sometimes I am able to nod off on the couch for a few minutes. Sometimes they doze off and I doze with them

I haven't gotten a diagnosis yet, but I feel pretty confident that it's N. I just recently had the PSG and MSLT done, and during the MSLT I went in to REM 3/4 of the naps. But I'm not sure whether I want to tell my agency about it... Like I said, none of my current clients are at risk to suddenly go in to cardiac arrest, but it is true that these things happen unexpectedly and I need to be able to recognize subtle signals. And I can't do that if I'm dozing off >.<

[LauraL]

I'm an environmental scientist. I work for a large government agency, but I miss the freedom and flexibility of academic life. Ironically, my research area in graduate school was night-time air pollution chemistry (sunlight influences the chemistry during the day, so it's completely different at night). When out on field projects I would become almost nocturnal! I definitely could not do that anymore. My nuvigil seems to run out on me by 10pm, and then it's all I can do to crawl into bed without injuring myself on the way!

[corey91386]

I am a High School Social studies teacher. Not going to lie it is pretty tough with N. But I love it. My Narcolepsy really sank in when I was working on my Master's. I managed to finish my degree and plan to teach as long as I can. I think your mindset is everything with this disorder. If you want something bad enough, you can have it. Maybe not as quickly and easy as others. I hated N for so long, but in reality it's just how it is and I will not let it ruin my life.

[Marietta]

I'm technically unemployed, I think, but I plan on selling my artwork, designs, commissions, and *sigh* working birthday parties (if I must) for work.
Basically, if it involves art and I think I can do it, then I probably have my thumb in it. I already have stuff up for t-shirts on CafePress, and I entered a MightyFine Adventure Time t-shirt design contest, but I also plan on putting my own original artwork up as posters and as t-shirt designs.

And, ugh, working birthday parties and commissions and stuff like that. I've got a birthday party coming up in the beginning of September, for the daughter of my moms co-worker. Originally I was supposed to do only one thing, but then she went and had ideas... so now I'm doing three different things. I'm making a big Cat in the Hat drawing but w/o the hat for a "pin the Hat on the Cat" game, making Thing bodies with no heads so you can put your head where that's supposed to be and have your picture taken, and then I'm doing Thing caricatures for the kids.

You wanna know the horrible part though? I'm so bad with children, it's not even funny. So my mom is coming with me to make sure I don't screw it up. But also the lady who 'hired' me is nice so she said she'd handle the kids and all I would have to do was focus on drawing.

So yeah, I'm unemployed, trying to make money off my art and doing little jobs here and there. Not that this has been very successful... but, it'll work, I just need time.

[B Schwen]

I am currently in the USAF. I've been in for 9 years, and have just recently been diagnosed with Narcolepsy w/ Cataplexy. Unfortunately this pushed me off of my main job of loading and maintaining weapons systems on Aircraft. Since moving from MX I've been assigned multiple different jobs. I was a training manager for almost 200 people, and I guess they liked the work I did, because now I work for the Commander of our Squadron organizing all of our personnel information, some 400+ people. Basically I'm an underpayed HR guy. I also have a PT job leading the priase team at our Chapel on base. I play at my own local service as well. I go to school part time in hopes to eventually complete my Gaming Development Degree.

Although I was just diagnosed We're pretty sure I've been living with N for over 4 or 5 years. I just assumed it was exhaustion due to the long hours of work with no breaks. I have found that I stay awake better when I have stuff to focus on. As soon as I got put in an office setting things started getting much worse. The progression was riddiculous. Before the worst thing I had to deal with were the ticks from stress and guiddiness, and the sleep spells from being up to long. Now I fight to stay awake all day long because I stare at a computer all day long. I guess maybe a degree in Computers is an odd thought, but if it holds my interest I'm better with the focus. I think the Cataplexy is as bad as it is now due to the high stress of the medical seperation. Not knowing what i'm going to do on the outside is a hard thing to deal with. Finding a job is not easy for a weapons loader, if you know of a job please let me know! The worrying about how I'm supposed to support my wife and kids is crazy. I don't know where to even start. I haven't been a civilian in forever. I forgot what the life is like. I know that the spot we're in now as a nation means work is going to be even harder to find. These are all the little things that stress me out. The meds were great at first. I had to try and find a way to express how they affected me because I just couldn't describe it myself. The best thing I had was that movie Limitless. Trying to explain how it felt like the haze was gone and I was awake instead of blurry was very difficult. Most people just don't understand. Sadly the effects were short lived. I've switched meds twice since then. I'm now using Ritilin and Dexadrine to stay awake. That and a whole lot of willpower.

Sorry for dragging on. This is my first time posting on the site, and it very liberating knowing that people might actually understand what I'm saying.

[hols8]

I am a college student who is about to graduate with a BA degree and a double major in Political Science and Spanish. I was diagnosed with severe narcolepsy and Cataplexy when I was in the 6th grade. College was a lot easier then high school for me due to the fact that I could make my schedule so that I could have breaks between classes and have time for naps. I plan on going to law school next year and hope to be a lawyer one day. I'm not going to lie, it can be rough getting through school, but you have to be willing to do what you have to to get it done. I am an extremely independent person and hate having to have disability accommodations. However, from the time I was in 6th grade I received accommodations under a 504 plan. I realize now that I didn't use the accommodations as much as I should have in high school because I was so embarrassed about having to have extra time on tests or getting up and leaving class so I could get a quick nap in the nurse's office. But now in college I realize that it is more embarrassing to do bad in school then it is to use my accommodations and be more successful.

[Swifty]

I'm active duty military. I've been in for 10 years so far. After being diagnosed with Narcolepsy I had to fight to stay in. I had to write a bunch of letters, get reccomendations, & etc. Earlier in my career I was a Convoy/Gun Truck Operator. Now I'm just a vehcile trainer. I basically train troops on a wide range of different tacticle and non-tacticle vehicles but I pretty much work at my own pace. I've been in long and built a good reputation so people pretty much let me do my own thing as long as the mission is being met. I still have to deploy(go to the sandbox) when the time comes but it takes a lot of work to get approval for me to go. Its a struggle being active duty military with N but its a fight I refuse to give up on. I figure i'm stuck with N for the rest of my life so instead of letting it control everything I do I try my best to fight it...even though I do loose every now and then.

[doctahjay]

I am a medical student! I plan on becoming a subspecialized pediatrician, but I am unsure of a specialty as of right now. I enjoy cardiology, neurology, emergency med, and I am open to other areas, as well. The road to becoming a physician is a long and hard one, especially with narcolepsy. It is definitely difficult to go into a career as demanding as medicine, but I'm sure we all agree that we need more docs who understand what it is like to be a patient and treat us as individuals. Unfortunately, I was on an Air Force scholarship, but I was medically discharged. It's okay though. I've known about my N+C for at least 6 years, but I never got officially treated until May. WOW! I was missing out. Since I started meds, it is like a switch turns on in my head and it just feels clear.

Before medical school, I spent a year teaching high school and coaching track and cheerleading. I always knew I wanted to be a doctor (since ~age 13), but I wanted to make some cash and I was a tutor for my university, where I discovered I loved teaching. It was a wonderful year, and we don't give our teachers enough credit :-) It's like babysitting 90+ kids a day. 90+ kids, most of whom, have no discipline at home and don't give a crap about school. It got a little wild, but I loved every minute. I also developed my "teacher face," "mom face" and "poker face" at the age of 22. Useful tools, for sure.

So happy to finally find N network and people who get what it's like!!!!

[sunnydaysc6111]

I am a child support agent for the state of NC. Been doing that for 24 years.

[Samwise]

I'm a genetic counselor for a high risk perinatal center. I was diagnosed with idiopathic hypersomnia in February of 2011 but they couldn't rule out N. Last Friday I was officially put into the N category by my new doc here in Florida. We are pretty sure I have had the condition since a small child since I have always had EDS, sleep walking and hypnagogic hallucinations. I never really paid attention to how abnormal it was until I was in grad school, mostly due to how many hypnagogic hallucinations I was having.

Like someone else said though - I'm not going to let N stop me from what I love to do! I love genetics, I love my job, I love to craft, I am going to start up taekwondo and kick-boxing again... And again, like someone else said, I'm so glad to have found a place that is full of people who know exactly what this is like.

[Mikey]

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 have a high achieving daughter (in her late 20's) who was diagnosed with Narc in her last year of university.She is now pursuing a stressful career as an attorney.With the assistance of meds she strives to maintain a normal professional career and social life for a bright & outgoing young person.She is single & has not advised anyone at work of her Narc.My impression is she works harder & longer to compensate.I would like her to lead a less pressured lifestyle and ,to the extent feasible,reduce her reliance on meds.What advice can others provide on how I can encourage this outcome? - or even if I should do so ?

[mustangashley]

I am a sonographer/ultrasound tech. I have degrees in both x-ray and ultrasound. Working in radiology can be challenging because it requires me to work in a dark or dim room. I do the ultrasound in the dark and my desk is in the ultrasound work room where the images are interpreted. That room requires dim lighting as well. I work the typical 9-5, 40 hour week job. I was diagnosis with narcolepsy 4 months ago. Working is about all I can do. I have a 45 minute one way commute to work. I get up at 5am and get home at 6pm. Working a 9 hr day and driving nearly 2 hours takes all of my energy. My employer did not agree to accommodate the 1 reasonable request I submitted. I dont get any 15 minute naping breaks. I work for one of the biggest and best university/medical centers in the nation yet they still do not understand what narcolepsy really is...even after I educated them on the condition. I've been feeling really down and depressed about my situation lately.

[kyethra]

I'm finishing up graduate school right now. My masters is in library and information science with a focus on youth services and I'm k-12 certified in that area with half a dozen endorsements. But there are no jobs in that field where I live. Too many librarians and teachers. So I am finishing up my CAS in that area and getting a graduate certificate in applied behavior analysis. I work with children and adults with special needs, mostly autism. I'm just starting my own business doing this. I am not willing or able to handle a commute of more than 30 minutes, 40 minutes max. I wanted part time since I have a baby and other disabilties. It is really tough. We will see how it goes. I could probably be a stay at home mom, but I tried that and would rather work at least some. We are place bound for my husband's job, so I can't relocate for the job I want either. And if I want to have another kid, that is another issue as pregnancy was very difficult even on xyrem.

[munky]

I'm an operations systems analyst. Basically, I sit and stare at a computer screen all night, waiting for something to break, and then I fix it--or call someone who can, if I can't. Didn't used to be so bad, because I was able to distract myself in the slow times, sometimes by crocheting, sometimes by reading, sometimes playing a game on my phone ... But, Management has decided we can't do any of that anymore, which means about the only thing I can do is surf the 'net, which is really rather boring--and one of the shift supervisors is even trying to crack down on that, which would leave me with absolutely nothing to do but twiddle my thumbs and stare at a screen. Not an ideal situation.

However, I'm back in school, working on my BS in Computer Science, specializing in programming. I've been coding for fun since I was a kid, but not in any language that's actually useful in the business world, so I need to learn new languages (yay!) and get the paper that says I know them. Then, hopefully, I can find a job as a programmer--either with my current company or elsewhere. Then I'll have a job where I actually have things to work on! Programming can be stressful, yes, but nothing beats the feeling you get when you finally work out a problem that's been driving you up a wall. Love, love, love that feeling! Plus, a lot of the programmers for the company I currently work for get to work from home. I'm all for that.

[dormir]

This thread gives me hope that maybe I can work in a demanding job. I'm a pharmacy technician and a student right now. I know I need to work in a profession where it is challenging and to be on my feet. I can't sit still. One reason is falling asleep risk, the other reason is because of ADHD.