Hi,I can relate to all your posts: I am an RN who was diagnosed with Narcolepsy and RLS 9 yrs ago. I am 54 yrs old and fortunately,even though I was tired a lot and slept more than others most of my adult life,it did not interfere with my life or work until the last 7+ yrs. By then I already had a fair amount of work experience under my belt so it was not hard to get a job as a case manager in a hospital (no longer do hands on nursing). The meds have been a mixed bag: sometimes they work.sometimes they don't.I spend a lot of time off sleeping and have had to change meds/doses thru the years. Because I am run down my immune system has suffered and I get sick if I don't get enough rest.
I just want to let others know that with the right meds you CAN work as a nurse in most fields you want...as long as you stay away from long hours and switching shifts. Even though I no longer do hands on nursing (a choice,didn't have to stop) I find it more and more difficult to work full time. My current job doesn't offer part time so I work 5 days/wk. Plus I can't afford to cut back anyway right now. Here's what's helped me:
1) I don't do mornings well so swing shift always worked better for me.
2) Never tell your supervisor you have narcolepsy. It will affect how you are treated and if you get certain jobs.
If you need a UA to get hired just bring your Rx bottles with you...if it's legal it should not even get into your record (we have HIPAA rights too!)
3) Work part time if you CAN afford it.
4) Don't get exhausted,you'll get sick.
5) Keep your appt's with your Sleep Specialist (or whoever) because you may need a track record someday if it gets bad enough that you can't work and need SSI or a note saying you can't work full time,etc.
I finally got called in over my use of sick time 6 months ago because I've learned that when I'm really exhausted I need to call in for a day here and there.I certainly can't blame the hospital,it's their policy.I'm in a Union Shop fortunately. I filed for FMLA and had my doctor fill out the forms saying that I have narcolepsy and may need to take time off from time to time (I don't abuse it). This went to the HR dept. and my boss never saw it...all she knows is that it was approved so my job is protected.
Good luck to you and let's hope for a cure one of these days!!!!!!