Based on your mention of being on Provigil and having a union rep, I am assuming you are located in the United States. Two things you need to do in the work arena. First, and do this ASAP, sit down with your boss and discuss with them that you have been diagnosed with Narcolepsy. Make sure you have any supporting documentation you can from your doctor, including verification that you do, in fact, have Narcolepsy. Narcolepsy IS COVERED by the Americans with Disabilities act. As such, if the Narcolepsy is causing problems with your ability to work, your employer MUST MAKE reasonable accommodations for you. In my case, I asked for, and was granted, a very flexible schedule, time for naps (they even installed a “quiet room” for me to sleep in), exclusion from random drug tests, since I would fail them anyway now due to the amphetamines I am on for the Narcolepsy, and the re-scheduling of meetings that would normally be scheduled in the morning. If they are unwilling to make any accommodations for you, contact the US Department of Justice. They are charged with ADA enforcement.

Since you can’t find your local union rep, call his/her boss. Your union needs to know what’s going on so they can better fight for you if the company starts to balk. Remember, you pay for your membership in the union, and they have a duty to help you out when you need it.

Of these, the most important thing is to notify your employer. If they fire you for problems associated with the narcolepsy, and you haven’t told them you have it, they have done nothing wrong! They have to know about it before hand. This doesn’t mean you have to go around telling everyone you have Narcolepsy, but your boss does need to know.

This is really about all the information I can help you out with at this point, as the whole Narcolepsy thing is still only a few months old for me (well, the diagnosis, anyway). Hope this helps!

Christopher

-----Original Message-----
From: lupineita [mailto:binkydeath@...]
Sent: Friday, April 11, 2003 3:16 a
To: Narcolepsy-Chat@yahoogroups.com
Subject: [Narcolepsy-Chat] I really, REALLY don't want to be Narcoleptic!!

I'm sure everyone will agree with that statement!  Heh heh.  But
hello anyway to you all.

I've had one consultation so far with my sleep doc and been dignosed
with Narcolepsy with apparently 'classic' symptoms.  I know I'll
have to insist I get the proper scans and stuff to make sure I've
got N or something else 'cos obviously I'd rather have something
curable *sigh* so that I can get some real sleep instead of living
on stimulants.

I know I've got to go back to my doc to talk about what to do after
after my first consultation finally after years of EDS and the fact
I've started collapsing more and of course the weird hallucinations
and not knowing what reality I'm waking up in from day to day.

I only managed to get to a sleep doctor after deciding after of
years of depression that I wasn't actually depressed, but incredibly
tired all the time!

I've just had a week of Provigil which brought the hallucinations
into the day and had a really bad effect on me, the side effects
were very, very bad.  It was quite funny though watching a
photograph of my husband playing guitar, pity there was no sound
though *heh heh*!

I know I've got to talk this through with the doc - my GP's useless
for help of any kind on this - and you know that feeling of trying
to ask the right questions when you're too tired to make sure you've
asked the right ones (and after all, they're taking charge of the
consultation and not you right) when you're talking to the sleep
doc?  Anyone got any hints on that?  :-(

I can no longer work properly in the office and I'm either going to
have to quit or they're going to have to fire me I guess - does
anyone know if I should wait for them to fire me on medical grounds
or if I should just quit????  Which would be best???   PLEASE
HELP!!  

My union rep is too busy to catch and I'm going bananas now full
stop!  Like I said - my doctor WON'T help!  My boss doesn't like me
so please don't suggest to ask her for help!  She WON'T understand -
they've got all the information off the net I can provide about
Narcolepsy anyway.  Once I lose my income either way I'm THROUGH!!!

I'm in pain all the time and tired and the hallucinations have been
driving me crazy for years and years and years!!  I'm only nearly
21!!!  I'm sick of being called a liar and lazy and pathetic.  My ex
even used to beat me up for being lazy when I just fell asleep
places and left me where I was if I collapsed when I was out.

Really - I've got NO support except the moral support of my husband
(who it would appear has sleep apnea *sigh*) cos he really does
understand.  I've even been referred to a psychiatrist cos I thought
I was going crazy.  I know it's a long shot but PLEASE can anyone
help????!!!!!!!!  Please    -  with love, Lupi  xx