Its been a while since I have been here, but I have been recently given a firm diagnosis on whats been going on, I have severe narcolepsy. My narcolepsy consists of excessive daytime sleepiness and REM attacks (REM is when I fall into quick sleep states and lose control of muscles; ie cognitive dysfunction, speech slurring etc, different than cataplexy b/c I am not falling down rather my eyes are shut and the whole body wants to sleep) Narcolepsy in itself is a neurological auto-immune disease that results in the immune system depleting cells that control the sleep/wake cycles, short term memory and the bodys fat buring abilities. It is the same part of the brain that other diseaes like Parkinsons and MS targets.
My narcolepsy will be a lifelong situation as there is no cure or permanent fix, only hope is that most Narcoleptics by age 60 show a reduction in daytime sleep attacks. With narcolepsy comes other dreaded side effects such as depression/anxiety when the sleep wake cycle causes sleep deprivation. Up until now I have had FMLA which protected me, unfortuantely my sleep attacks were becoming so severe I have exhausted my FMLA. However, in 2011 one of my drs submitted a note requesting ADAAA accomodations for some of the side effects of narcolepsy. I was told not to worry about it, it would be handled, HR has a copy of it on file. Well, sure enough I am told it was never submitted to corporate for approval last year and they need an updated one. Now I am out of FMLA protection (some time may roll off, but in the meanwhile it affects my dependability) and the form was never submitted to corporate. That's just the tip of the ice berg. My HR has other notices that they have on file with clarifications stating I am protected under the ADAAA from several different doctors and none of them were ever submitted to Corporate. I am constantly told, either they will do it, and then other times the notes are not good enough, and the drs rewrite them and then they are never submitted anyway. I have contacted several times to corporate directly only to be referred back to local HR. I am furious and feeling that this is creating a hostile work enviornment for me, because other than the accomodations being requested I am very successful at my job.
In the meantime my dr is going to submit another note under the ADAAA asking for slight schedule modification, later start time (not too much diff than my normal schedule), asking for consideration to combine breaks and lunches to also be allocated as a short scheduled nap time, and the ability to allow an additional hour a day to nap (outside of breaks and lunches incase i need to eat a lunch) and asking my employer to consider allowing me to stay an hour later to make up the time as a schedule adjustment. On top of all this, my employer told me that I had FMLA time that I could use, when I didnt which is why I am out and its going against my dependability, they are going through the books now saying they made a "mistake" and are adjusting my times. They also cannot tell me when these adjustments are from. They'll say things like, last pay period, and when I ask for proof of dates they say we've called corporate and waiting for a response, then 6 months goes by and they completely forget to keep me updated and say oh we never heard back from corporate.
Our building has recliners/chairs/sofas so there is the availability to lay down during the day. Its just simply walking away from the desk and being allocated the schedule adjustment to do it. My employer said that as long as the dr sends in the note under ADAAA they can backdate the time to withdraw the dependability marks up to the most recent FMLA paperwork for the condition. Of course, I am worried since I have been lied to before that this wont happen as promised so I have been fighting hard to stay at my desk until the paperwork is in and approved by Corporate. I feel asleep several times during the day into what is called automatic behavior with some REM eye shutting. The worst part is my health is at risk because if I have a sleep attack that I cannot control and my head hits the desk or I fall backwards out of my chair I could risk injury on the job. I do have enough notice from my body to be able to get to the areas when I feel the sleep attacks coming because I get a warning sign of muscle looseness. Does anyone have recommendations?
So my employer is aware from all my medical documentation : ADAAA notes were sent in 09, 11, and now 2012 as well as concurrent FMLA documentation. Some drs had to send in the same paperwork 3-4 times because it wasnt good enough for my employer.
Narcolepsy w/ vision loss and a neuro eye disease
With the combination of my medications and the accomodations I will be very successful at my job.