Hi Alexis. Welcome to DS.

Personally, I wouldn't wish this understanding on anybody. I would go for the blissful ignorance if it was available to me. My personal wish is trust and tolerance. Trust me that I am not doing this for your inconvenience. May you never know the inside scoop, for your own sake. Please be tolerant of what I need to do to cope.

I wouldn't wish this understanding on anybody, but it does still feel great to discover folks who share the base understanding from the inside perspective. People like you. This is a slow moving forum, but hope springs eternal. Hoping we can get dialog rolling here. . .

Welcome to the forum.

Agreed. I always tell people that I would never wish what I struggle with on a daily basis on them. That it is not fun nor "cool" because I get that from people a lot.

I just more wish people would at least TRY to understand.

peacemaker
Thank God for my " Cloud" recliner chair. I live in and out of it. Mostly in. I stopped getting angry at myself about it. I have narcalepsy,SEID, and a host of other medical maladies. My advice is to "give yourself a break". I have always been very driven (I have ADHD too). So, I know I am not lazy, or unmotivated. I would rather be up and doing, but I know I am doing the best I can. I just pace myself for everything. If I have to go somewhere. if I wake up earlier, so I can go on and get ready. Then when the ""have to close my eyes " sets in,I can rest assured ...pun intended, knowing I am ready to go when it is time.

I have same diagnosis narcolepsy without cataplexy. And am also a light sleeper. I was put on amitriptyline to help me fall asleep stay asleep but not have a drunk feeling in the morning. What were you prescribed for yours

My life has been destroyed over the past 2 years since the onset of my narcolepsy and mainly due to the people surrounding me and their ignorance towards this diagnosis. For 2 years I knew something wasn't right and prayed everyday to be properly diagnosed so I could show everyone they were wrong and I wasnt " just being lazy" or "doing drugs and using this as big elaborate cover up" but even now that I can prove them wrong it doesn't help they still don't understand how I feel how hard it is for me to struggle to get up with my kids everyday nd function when for 25 years I was active lively and healthy until one day I wasn't anymore. I do wish I had at least 1 person in my life who understands how hard it is.

Agreements all around... but I couldn't wish this understanding on anyone either. Naps are like being dropped straight into hell at a million miles per hour and the pulled back up into a blaring, screaming, bright insane aquarium in an instant; however if you can stomach them. They help you regain sanity AND be functional. Personally I do a regular routine every day. It REALLY helps to have routine naps - 1 hour each. No arguments up and back at it. It takes a hell of a lot of will power and like I said the journey down is still nothing but terrifying, but I could not live without them.

Oh and personal "favorite"... "You will have more energy if you would just lose weight." Ha!

People won't understand, so I stopped expecting them to.

Usually I explain it like this when people say "oh everyone feels tired" or "I feel tired all the time too!":

"You know how you feel when you haven't slept for 48 hours? I feel like that all the time. But seriously, if you're really that tired all the time, that isn't normal - you should really talk to your doctor as there are some good treatments out there - I should know, I have narcolepsy!"

Basically - I make it about them. I'm the one who's diagnosed with a sleep disorder and under the care of medical professionals. Their motivation for saying "oh everyone feels like that" isn't to make you feel dismissed, it's because people like to find commonalities. They're trying to relate to my situation. And if it really seems like their motivation is to dismiss me or diminish the impact of N, then they're not someone I really want to be sharing intimate details of my medical history with.

With any luck they'll get the help they need and thank you for encouraging them to see a doctor.

If it's someone who -needs- to know my diagnosis for some reason and they're being really stubborn about accepting my N, I'll use this line:

"Yeah, I hear what you're saying. Everyone gets tired around 1-2pm. But that's normal - ever heard of "siesta"? But seriously, I was skeptical too until my doctor told me he was going to prescribe me air-force grade 'go pills' to take twice a day. They give these pills to fighter pilots to keep them alert for 40 hours at a time. Have you heard of that before? I was shocked!"

Or

"When was the last time you felt rested when you woke up?"

They'll think back. If they answer 'never, I'm always tired' I ask them if they work the night shift. If they do, I tell them there's something called work shift sleep disorder and that it's a real thing, their suffering is real. If they answer no, I still tell them that it's not normal to feel tired all the time and I'll tell them how deep meditation has been effective for me. If they don't seem to know the last time they felt rested, they probably feel rested all the dang time, so I tell them that I can remember exactly 2 times in my life that I have felt rested after a night's sleep.

Tl;dr

I deflect the questions back to the other person, trying to find a point of commonality. I mean, if they're really that tired all the time, they might have narcolepsy too!

Hi Alone. I'm in my 60s and have had narcolepsy for many years but only diagnosed in 2012. I'm a nurse as well and all I can tell you about support is to do it like this with an on line support group. I don't know if you are familiar with Carly Simons song : where she says ".... nothing is real unless its happening to you". It's a line I always have to remember - not just with my patients in helping them to cope but for myself to lessen the stress of FEELING ALONE. Not just with narcolepsy but with many life experiences. .... especiallly those dealing with physical or emotional challenges. Also regarding this inability to wake up in thee morning. I have been so disabled by this problem for years until recently I was diagnosed with hypothyroidism and placed on medication for this condition. Suddenly I pop awake every morning at 6 am ! Really AWAKE! I hope my words give you some measure of comfort. And maybe you want to consider asking for other blood work that might be contributing to the narcoleptic symptoms. Perhaps Speak to your primary. Or neurologist.