What Do You Wish People Knew About Narcolepsy?
You say you're tired mid-day, I wake up tired. By mid-day, I'm overly exhausted, mentally and physically drained.
That can be a hard concept for people to understand. I would guess that comparing it to the exhaustion that comes with the flu (the real flu, not what people often think is the flu) would be the closest comparison you can make to anything others have experienced. Of course, that's easierto handle because people know the exhaustion will be short-lived. Thanks for chiming in. Warmly, Lori (Team Member)
I wish people understood that we are not experiencing restorative sleep. I get the "must be nice" comment a lot around my narcolepsy and napping. The assumption that we just peacefully fall in and out of deep, restful, sleep has been a tricky one to navigate. When I would try to explain my reality (and the actual fear I have now around sleep) I would get a lot of disinterested looks. haha. So now I just smile and move on.
Having N1 has definitely made me more aware and empathetic of other invisible disabilities I may have misjudged or downplayed in the past.I wish the Sams! I had to leave my job because of it. After working for 30+ years…& taking lots of meds to stay in my job (which was very difficult, very driven, writing legislation, reviewing it, etc. With many deadlines)… I started to deteriorate. My Dr. said that I was having to take too many Adderall & other meds - to stay awake …& it was hurting my heart. I literally worked late at night, and took a nap under my desk for my lunch break in lieu of eating or going out). Finally, I got to work from home… but they wanted me to come into work every other day. Then, carting my files and computer back and forth became a nightmare! Finally my Dr got them to agree to let me work from home. I had to go in once a week to turn in reports. After a while, my big boss decided that it was causing confusing in the office, and I had to come back to work or quit. I did it for a while. But I couldn’t it anymore. Finally I retired… not the way I wanted to go - no party, no hoopla, nothing! And, I can truthfully say - I gave everything I had to that Department - my whole life. It breaks my heart still! 😢💔 What a tough way to end your career. You certainly deserved a party for the way you stuck with it and tried to hang on. Even though you weren't ready to retire, I hope you're enjoying it as best you can. Has it been easier to manage your narcolepsy? Thinking of you. - Lori (Team Member)
That it is a real condition and I'm not just tired. It's a Neurological condition as well and it does exist many people suffer from it. There are more things evolved with it besides just sleep as well.
We hear you. More awareness would be so impactful. Feel free to share any of our articles if ever you feel in might help. Warm wishes. - Lori (Team Member)
It is not by itself considered a disability.
Yet 1 definition stated that narcolepsy is a disabling condition marked by excessive daytime sleepiness and cataplexy.
If that’s not a disability nothing is
