I have had narcolepsy type 1 for more than 8 years. I am at a loss for what to do. I lost my job because of folks not understanding it.
Losing my job
Let me explain. I had a boss that didn’t want to work with me because of it and they moved to a new location, even though I had the work accommodation approval allowing me 15-minute naps 3 times a day. At the new location with a new boss, I missed a flight because of difficulties getting medication. I was fired not because of job performance but because I missed a flight due to difficulties getting medication. You would think I could file a successful lawsuit because of my disability. Nope. EEOC dismissal.
Finding the right doctor
So currently I am unemployed using Medicare and in between doctors. One of the doctors who initially gave me the medication later decided to tell me to find a new doctor because he’s not used to prescribing this type of medication. I am hoping that the new doctor will give me a prescription but he is backlogged until January. As I'm writing this post I am pausing often because my emotions are making me go into cataplexy fits.
Dealing with my emotions
Sometimes I wish they could cut out the parts of my brain that have emotions because dealing with uncontrollable sleep, delusions, and trying to calm my emotions like Spock is unbearable.
I am truly sorry that I do not have something uplifting to post, I am just in a bad place right now and have to vent. At least in some way, it makes me feel better to talk to people that understand.
How important is following a daily routine for managing your narcolepsy?
Join the conversation