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janis gilpin

Trying To Understand..

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:( i have been dianoised with narcolespy since 1995 and i still am having a hard time living day to day at times i cant sleep at all which i dont under stand and also i am having more trouble with hallucinations since changing medication from desoxyn to provigal also having to explain my sometime bizzare behaviors when i am sleep but appear to be awake . i only sleep for maybe 2 hours at a time people just dont know how lucky they are to get that " 6 to 8 " hours in its something i never see other times i just doze off not even knowing that i was a sleep until i see the look on the face of who ever woke me maybe instead of trying to make sense of it all i should be coming to an acceptstance of it ?

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:( i have been dianoised with narcolespy since 1995 and i still am having a hard time living day to day at times i cant sleep at all which i dont under stand and also i am having more trouble with hallucinations since changing medication from desoxyn to provigal also having to explain my sometime bizzare behaviors when i am sleep but appear to be awake . i only sleep for maybe 2 hours at a time people just dont know how lucky they are to get that " 6 to 8 " hours in its something i never see other times i just doze off not even knowing that i was a sleep until i see the look on the face of who ever woke me maybe instead of trying to make sense of it all i should be coming to an acceptstance of it ?

Hi janis!

Sometimes I think we just have to face it...Not all of us are good sleepers. More and more I seriously think we need to snub the world, sleep when we want, be awake when we want and just...live. Narcolepsy has taught me who my real friends are, that is for sure.

What a strange condition that people associate with instantly falling asleep can keep us up.

love and prayers

-Stu

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Janis

I am new to this site in the past week or so, but I was officially diagnosed with Narcolepsy in Dec. 2004. I completely understand only sleeping for two hours. It is also an odd theory to most people that Narcolepsy involves being tired but often time insomnia too. I have spent many nights awake. I don't know that "acceptance" is the right word to use. I haven't given up hope that someday I will have more energy and sleep better. My doctor and I have gone thru many different options and medications. He seems to still think that we can get a better handle on things. I try very hard to believe that. "Accepting" things the way they are right now would be no fun at all. So I am acknowledging them, dealing with them, and trying to live the best that I can right now. I try to hold hope for the future though (somedays that is much easier then others). I am not working at this time. I have worked in the past and struggled every day. I was incredibly crabby all the time and constantly feeling like I was running behind. I am someone who needs to be out and about, but that just isn't possible now. I hate to say it, but my sleeping has become worse with time and not better. It is a challenge to get thru a day when you are never getting good sleep. My body seems to like 2-3 hours of sleep and then 2-3 hours awake. It is a pretty rough way to live. I have 2 boys and they take almost all of my energy every day. They deserve it. I struggle the most when it comes to them. I often feel like I am letting them down - that I want to do so much more. This site has been one of the greatest things I have found. I was feeling really overwhemed. I was mad that this was how my life was going. It wasn't part of my plan. But one thing I see on here is hope. People are understanding. They show me that there is a way to get thru this. So back to "acceptance" - I accept that I have N, but not that it won't get better. It has brought a better feeling in me to recognize where I am at and that others have been there. It does help find peace of some sort. So thank you to everyone who has posted their expieriences (I will post more of mine soon) and thank you to those of you who have the positive outlook that so many of us still need.

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