9 replies to this topic

[ulooktired]

I am working too much, and I am unable to take my xyrem once a week and one weekend a month because I have to do call ( I'm a nurse). I feel so stuck because I have a job I like and there are not any other similiar job possibilities where i live. The company I work for has said that the nurses have to work Monday through Friday. The best I could get would be to work less each day, like maybe 32 hours a week (can't afford to loose insurance), but it would have to be Mon-Friday regardless. I'm too chicken *BEEP* to ask for this because it would mean that someone else already working too hard would have to take care of my clients from say 2 pm -5pm when we go to just the on call. Are you following me, I'm doing pretty bad today without taking my xyrem last night provigil only helps for 2 hours or so for me. I don't know how best to ask for this, and my supervisor has already done so much for me, for example I do my one night of call on Friday night and so i do one less call than everyone else because when you do the weekend it's FRiday thrue Monday am. The work is very emotional (but I love it) and it requires tons of multitasking and there's a lot of stress so my cataplexy is hard to manage. I just can't work this much and take care of myself, and I also have a 18 month old. Unfortunately he sees me mostly in a horizontal position! I also have to work to support my family. I drive 50 miles a day on average sometimes much more, and it's only recently that I have been able to stay alert, thanks to xyrem. Any ideas? Should I just demand it? I hope this makes sense.

[Lais02]

First of all... I have no idea or experience with the work + N thing... but her's what I think anyways

I think they need to make "reasonable" accommodations for you. (my roommate thinks this too!) You should ask Human Resources about this. Explain the situation to them as best you can. I would tell them that in order to take your meds, you can not be on call. So maybe they can just eliminate the "on call" part of your job for you.

I hope this helps! Good luck!

[malachi777]

I am working too much, and I am unable to take my xyrem once a week and one weekend a month because I have to do call ( I'm a nurse). I feel so stuck because I have a job I like and there are not any other similiar job possibilities where i live. The company I work for has said that the nurses have to work Monday through Friday. The best I could get would be to work less each day, like maybe 32 hours a week (can't afford to loose insurance), but it would have to be Mon-Friday regardless. I'm too chicken *BEEP* to ask for this because it would mean that someone else already working too hard would have to take care of my clients from say 2 pm -5pm when we go to just the on call. Are you following me, I'm doing pretty bad today without taking my xyrem last night provigil only helps for 2 hours or so for me. I don't know how best to ask for this, and my supervisor has already done so much for me, for example I do my one night of call on Friday night and so i do one less call than everyone else because when you do the weekend it's FRiday thrue Monday am. The work is very emotional (but I love it) and it requires tons of multitasking and there's a lot of stress so my cataplexy is hard to manage. I just can't work this much and take care of myself, and I also have a 18 month old. Unfortunately he sees me mostly in a horizontal position! I also have to work to support my family. I drive 50 miles a day on average sometimes much more, and it's only recently that I have been able to stay alert, thanks to xyrem. Any ideas? Should I just demand it? I hope this makes sense.

I would request FMLA paperwork to be filled out by your doctor, just in case you cannot show up for work. It gives you 12 weeks of unpaid leave, but your job is protected. Then ask doctor for an order to give you no more than eight hours per day of work due to a physical disability. It will probably work but i would also consult with an attorney just to make sure it is alright.

[Mike M]

Then ask doctor for an order to give you no more than eight hours per day of work due to a physical disability. It will probably work but i would also consult with an attorney just to make sure it is alright.

Malachi777 is absolutely right. I also think these links will help you. Definitely check out ADA Title I in this document from the ADA. Also, this sight with suggestions for work place accommodations should help you. They even have a form letter for requesting accommodations. Remember, they are required to make adjustments because you do have a disability. Plus, it is in everyone's best interest in the long run. If your narcolepsy is anything like mine, there are times when I have pushed too far and should not even (and can't) decide which sock to put on first. It would be awful for everyone if something every happened because you were too tired to do your job. Good luck. Sadly, it might be necessary to involve an attorney.

[ulooktired]

Malachi777 is absolutely right. I also think these links will help you. Definitely check out ADA Title I in this document from the ADA. Also, this sight with suggestions for work place accommodations should help you. They even have a form letter for requesting accommodations. Remember, they are required to make adjustments because you do have a disability. Plus, it is in everyone's best interest in the long run. If your narcolepsy is anything like mine, there are times when I have pushed too far and should not even (and can't) decide which sock to put on first. It would be awful for everyone if something every happened because you were too tired to do your job. Good luck. Sadly, it might be necessary to involve an attorney.

Thanks for replies. I have to say i can relate to the sock thing. I found myself recently pulling out a stick of gum and not sure what to do with it!!

[ulooktired]

Going to do it today, ask for less hours. I have no idea how this will go over. Maybe I should do this after my appointment with my sleep doctor. I am sooo tired this morning and I know it's because I went 3 days without taking the xyrem. Thanks for support from all. I'm rambling but something funny yesterday, I was driving down a road and I knwe I was feeling spacing (but not tired) and up ahead I saw a huge black bear- it really looked like one! It was curbside trash container though. This is brain entertaining me.

[Military Mom]

QUOTE (Mike M @ Apr 12 2009, 08:01 PM) Malachi777 is absolutely right. I also think these links will help you. Definitely check out ADA Title I in this document from the ADA. Also, this sight with suggestions for work place accommodations should help you. They even have a form letter for requesting accommodations. Remember, they are required to make adjustments because you do have a disability. Plus, it is in everyone's best interest in the long run. If your narcolepsy is anything like mine, there are times when I have pushed too far and should not even (and can't) decide which sock to put on first. It would be awful for everyone if something every happened because you were too tired to do your job. Good luck. Sadly, it might be necessary to involve an attorney.

Thanks for replies. I have to say i can relate to the sock thing. I found myself recently pulling out a stick of gum and not sure what to do with it!!

Oh my goodness that sounds just like me! LOL

[Rip Van Winkle]

Hello

I am a newbie here,and a newbie to narcoplesy. While the official DX has not been made, the tech doing the latency sleep test on Wednesday said I fell asleep all the times, and reading the symptoms, especially the need for extra sleep during the day has haunted me for a long time, and I have lost several jobs due to chronic exhaustion fighting the narcoplesy. Oh that I knew the full situation earlier!

But I am not here to moan and groan; I am here to learn, and contribute as best I can.

In one job situation, I worked in a center for disability advocacy (CDA). My job was to oversee the others helping others who had TBI, CP, MS or any other sort of disability get the services needed for them to have reasonable accommodations to earn a living. One of the tools I used was a CD that I got from the government. The idea was to help the employers learn new ways to encourage those with disabilities to be most effective workers in a cost-effective manner. The biggest selling point that I had was the overall reliability of the disabled. Guess I am in that category, now.

I was unable to find that offer for a CD on the home site http://www.ada.gov/ . Nevertheless, I recommend that people educate themselves about this act, for it encompasses more rights than the 1965 Civil Rights Act under Lyndon Johnson ever did.

I also recommend that people contact a local CDA to find the local disability advocates in your area. In this field, they are the pros. In my way of thinking, trying to negotiate all the hoops and hurdles for yourself is akin to giving yourself a haircut by looking at the mirror. You may succeed in doing a good job in the front, albeit it is unlikely, and surely you will not cover the back of your head well.

Hope this helps someone.

[karllieb]

Going to do it today, ask for less hours. I have no idea how this will go over. Maybe I should do this after my appointment with my sleep doctor. I am sooo tired this morning and I know it's because I went 3 days without taking the xyrem. Thanks for support from all. I'm rambling but something funny yesterday, I was driving down a road and I knwe I was feeling spacing (but not tired) and up ahead I saw a huge black bear- it really looked like one! It was curbside trash container though. This is brain entertaining me.

Just got on here and saw your post. Has your request been accepted? I was a teacher and asked for less hours from the district. They agreed. Now I am applying for disability and my analyst is asking for my request for less hours in writing. That...I never did. I just went to the head of hr and asked verbally. It is something you might consider in case you need to go out on disability.
cheers

[sleepywriter]

I'm dealing with this as well. I am in IT and on call Monday-Sunday, every other week. Because of this, I often cannot take my sleep aid to help me sleep better at night. It has also prevented me from even trying Xyrem. So far stimulants are not helping me much.

The problem is that there is no freaking way I can ask to not be on call. It's just one of the responsibilities that comes with my line of work. The company I work for accommodates me during the day by recognizing my need to book a conference room to take a nap, but to ask for less responsibility would be a shot in the foot. It would only be a matter of time before they found some other reason to let me go.

Until I can find a company whose business doesn't require 24x7 up-time, find a training/teaching position, or just plain get into a different line of work, I'm screwed. I'm doomed to zombie mode every day, and doomed to extreme zombie mode every other week.

I'm sorry for the unhelpful reply. I guess I just wanted you to know that there are others out there who understand your frustrations.

I hope your talk with your employer went well. BTW, be sure you get EVERYTHING discussed in writing. Verbal agreements are not enough.