If you would like to express your feelings about dealing with Narcolepsy, this is the place to do it.
I know how difficult it is to find anyone to talk to about my feelings about my condition. I don’t want to feel that I am boring/irritating/embarrassing friends or family so usually just grumble to myself inside my head. I sometimes swear loudly at it as if it were an invading alien but I can’t say it makes me feel any better. But I can go on the forum, not to swear:) but to speak to forum friends who understand and don’t think I am nuts and it definitely helps.
How about you?
I understand exactly what you are saying Nel, I sometimes feel my husband forget I have narcolepsy cause he expects things out of me at times when it takes every thing within me just to get up and walk. They called this disease the invisible disease because you can’t look at us and tell something is wrong, and my husband has said a few time when I have to tell him I’m so tired and you act like I don’t have things going on, his response has been dang my bad I forgot about it cause you still look the same to me I just shake my head. I know that he nor my kids will never really understand what u go through in a daily basis but I do know that they try. P.S also I have to learn to stop pushing myself to the limit cause it doesn’t help me at all, but my husband always tells me never stop fighting this disease cause they need me so I just keep pushing myself cause at times it seems he gets mad if I say I’m tired or fatigued and I really think that’s crazy!
I feel the same exact way, like no one really understands…and they don’t unless they are in our shoes and have narcolepsy.
I totally agree SleepinBeauty 100%
What a relief to hear some of these things! Sometimes I feel despised by God; or wrestling with a spiritual lesson I missed learning along the way, long ago; and now must suffer the repercussions of learning-somehow !- the hardest way...Often I feel I shall lose my mind as I am confronted with all the abilities lost and skills 'uncomplishable' - or only vaguely remembered - as if in a dream...
No one seems to remember who I really am ; that is: what I once could do so easily: and now, my brain refuses to permit. Everyone takes sleep - even insomniacs!! - so for granted! - they seem incapable of comprehending the complexity ,horror and dread and sadness and "Peripherallality "of my existence - that is compounded (confounded?) by the still powerful remnants of my acutely perceptive ,analytical,and eurieka-like creativety - all grounded in the core premise of empathy. I dont seem to see / find much empathy outside of myself anymore
. Although I seem to be moving towards some kind of peace with this? I have never felt so lonely or alone.
I understand i’lico I never have taken sleep for granted and by the way I’m not only narcoleptic I have insomnia also and battling them both often times makes me feel like I’m losing my mind, I will never say that dealing with this disease is easy because those of us who have it know that’s not true, but what I will say is never give up and keep on fighting. And when times stated to get to much or to hard for me to handle my Dr referred me to a psychiatrist and she had helped me to the point that I can’t even put it into words. Stay strong and keep your head up i’lico:)
Dear All,
It’s good to read all of you expressing your feelings, lives and experiences 
We are a very special culture and community, for example like the deaf or blind community. Those out side of our “special community can’t” really know the way we know life to be. We clearly understand each other. I’ve found in my weaknesses I know my self better, enjo6 the tiny things in life like coffee in the morning, birds singing, sparkles from dew on the lawn. I also feel closer to my faith, in weakness I find real strength. There are some very difficult things I deal with and yet still even I on a good days want to deny what the whole picture is - I’m brought back to reality…cognitive is fading, sleep is coming, head is hurting I’m going down… Narcolepsy with insomniea, OSA, bruxism, and it goes on and on. This is the funny part - Getting ready for sleep involves, brushing my teeth, bite guard, “hose head”, " ear buds" adjust pillows… ok “mission control ready for blast off”. Or just passing out on the couch before I can do any of that. If out in public and have to just keep going it’s “major coffee time” to the point of irregular heart beats…sometimes sleep in the parking lot…
Please keep sharing, looking for all the little things to rejoice in no matter how small and to yourself be true
Never forget though we are 1,000’s of miles apart all around the world we do have each other.
Blessings for you all this new year, new joy, new discoveries!
Ranger
PS: kindness and love make a difference, give a smile away today. make someone smile and you will also be blessed
Yes, Ranger, perhaps thousands of miles away and it's easy to forget that. That's awesome! We have friends everywhere!
After ending up on disability through social security, I finally had to change my thinking about how I was going to manage my conditions, but the narcolepsy in particular involved a rearranging my perception of myself and how I was to better fit into life. I'm finally sleeping when I need to, though my sleep/wake hours go bonkers if I'm not careful. I silently imagine the routines of others I know, amazed that they've been waking up and going to sleep at the same time for years... so I'm looking at other people differently, too. A deaf friend at school once asked me, "have you always been that way?" I replied, "yes", and he said, "then that's normal for you". So I'm finally adjusting to the old normal. That means finding out what really does work for me as a person with narcolepsy, rather than always fighting sleep. I let myself fight it sometimes if I need to. When I think about all the years I tried to be the "other" normal, I feel better about where I am today.
I'm grateful for my narcolepsy friends, all of you, around the world! :) Seems like you're right here :)
That is so beautifully explained Carol. I have only had my condition for getting on for five years and it takes time to accept that I can no longer be the normal person I thought I was. I am only now coming round to accepting the ‘new normal’ though and still grieve for the old me.