Stages of narcolespy

does narcolepsy have stages like stages of grief? if you have experienced this, please share. i know at first i was glad to know the dr figured out what was wrong with me. then i researched and researched. then came all the overwhelming emotions- anger-realizing its not gonna go away- the two hardest emotions are constantly feeling like a disappointment in so many areas if my life and especially with my family. they are loving-but they seem to inderstand when its convenient but not so much when ive slacked in something. the second big one is trying to accept/balance limitations. half of me wants to be strong and push through- the ither half is knowing im not that me anymore. that is hard, very hard… please share if you have experiences stages or levels of this battle. wow-thats the first i said battle and so good to not feel like im waiting for the judgement to come…

I am right there with you, 100%! I have been a long-time sufferer, but newly diagnosed in the last year (40 y/o). I do feel like this is a progressive disease. I think it is different for each person. I personally can see that my battles do change in nature if that makes sense? Currently on Provigil 200 2 tx day. Some days I take one, some two. I feel it makes no apparent difference some days. I do feel in general if I take my first does right upon waking it helps. Problem is with a husband, two dogs and kids that I often take care of them first! Then it just spirals - I get so tired I just climb in bed to nap before working after they all go for the day. It takes everything to climb back out of what I call "a hole" to begin my day. I have found that avoiding that at all costs is key! I do try to move around a lot and that seems to help a bit. Once I sit, it is over. So my work as a pathology transcriptionist (type reports) is tough! I do work at home so that is wonderful, and a curse all at the same time. I have to really work at staying away from sleeping areas! I am glad you are here and I do need to be on here daily. I want to make that a goal this year. To find & GIVE support! Happy New Year :)

melissad-thank u for is so good to finally be able to talk with other narcolepstics. i have felt so secluded and glad to connect with others.

I felt really strongly about this, so I adapted the stages of grief used for other life long, chronic conditions to narcolepsy. Hope you find it some use.

You are much welcome! I AGREE! I cannot stress how important this site has been to me even just the few times I have been on here. Seeing that I am not alone - priceless. On another note, it is sure frustrating when you get the courage to open up about it to someone and they reply, that happens to me. No, no I do not think so. I mean sure there are undiagnosed out there but describing your sleep hallucination, constant dreams, constant fatigue - oh well I feel that way too. Or how I forget things because my mind was not really present at the moment, oh yeah that happens to me I think it is just age :///
8ntawake said:

melissad-thank u for is so good to finally be able to talk with other narcolepstics. i have felt so secluded and glad to connect with others.