My name is Cheryl and I am 47 years old.
I was diagnosed with narcolepsy 2 years ago and I am so frustrated. I'm so happy I found this site, I desperately need to know that there are people that understand.
There are lots of things I want to say, but will keep it short for no :)
We're happy that you found us as well. It's quiet here: think people are a bit busy over the holidays, or maybe they are still recovering! But I'm sure that things will get a bit more lively in the new year.
Seenie
ModSupport said:
We're happy that you found us as well. It's quiet here: think people are a bit busy over the holidays, or maybe they are still recovering! But I'm sure that things will get a bit more lively in the new year.
Seenie
Tinarica said:
ModSupport said:We're happy that you found us as well. It's quiet here: think people are a bit busy over the holidays, or maybe they are still recovering! But I'm sure that things will get a bit more lively in the new year.
Seenie
Hi Cheryl! It is a very difficult diagnosis, that so many don't understand the complexity of it, which we end up so hard on ourselves, depression, anxiety, seem to take over. I am new to this site, not sure how it works, but hopefully it is something to be able to not feel so alone. I hope you get this.
Thank you for the welcome :)
ModSupport said:
We're happy that you found us as well. It's quiet here: think people are a bit busy over the holidays, or maybe they are still recovering! But I'm sure that things will get a bit more lively in the new year.
Seenie
We can learn the site together :)
Tinarica said:
Hi Cheryl! It is a very difficult diagnosis, that so many don't understand the complexity of it, which we end up so hard on ourselves, depression, anxiety, seem to take over. I am new to this site, not sure how it works, but hopefully it is something to be able to not feel so alone. I hope you get this.
Hi my name is Daesja I’ve been suffering and I mean I mean suffering.I have only heard of people with family members and friends dealing with narcolepsy I feel so alone in fear
HI, I totally understand your frustration.
Thank I never actually talk with someone who is like me
Welcome 
yeah holiday time’s take a lot out of us. So, glad you found us 
it help’s to have other’s that understand.
Hi Cheryl, i’m 48 and i was just diagnosed correctly with Narcolepsy in November after a misdiagnosis by an out-of-practice neurologist 6 yrs ago. My provider and every nurse i know who knows the disease says, “Wow, how did you survive?” And i say, "Did i? All the lost jobs, all the lacks of promotion, the food stamps, Santa Cops providing our only Christmas preaents. Being written out of my dad’s will for no degree before age 30. I don’t call that survival, i call that 33 years of dieing. Have you gotten the same questions? Have you managed a better answer than me? I fought for a steady work schedule because we were rotating once a month. So i survived by volunteering to always come in at 0600 so i could sleep regularly. That worked for 5 years until they gave my shift to someone else while i was on LOA. I tried to find another shift that worked for our ticket load but the resultant sleep flip flop exacerbated my EDS worse than ever before so i rarely can work more than 5 hrs straight. They won’t let me nap and come back so i am getting screwed out of my profession. And pushing 50 with no degree and needing a flexible-schedule job, i feel pretty darn screwed right now. That makes me depressed and, guess what? My major EDS narcolepsy trigger is disappointment. So i sleeping 5 hrs a night on Xyrem and chancing heart issues by taking dextro-amphetamine all day. “But limit your caffeine, it might cause Restless Leg.” So much diagnosis, so little helpful information.