Narcolepsy Forum Posting

Posted by Daydreamer on April 29, 2000 at 22:07:16:

I would just like a small amount of everyone's time to air my fellings, and thoughts. I have been coming to this forum for over a year now and there has been times's it was my only link to sanity. You see the term has been in my life all my life and I just found out 2-yrs ago narcolepsy was the cause of all my problems. Being a women I was told nerves, harmones, change of life ..everything and anything. I was told by my family and friends it was all in my head, when I tried to talk or tell anyone they would who was suppose to be my friend, get sacred, back away, and basicaly think I was crazy and had lost my mind. When you go thru all we half to go thru to fight everyday for the right to do everyday what people take for granted this is a refuge for so many. Over the time I came here I have watch it change and it is not the same as in was. I know that one would say that time changes everything, i am hear to tell you that is not so I am 48 years old and as I said befor the term has been in my life forever. When the doctor told me I had narcolepsy I told him I had rather he had told me I had something terminal not narcolepsy. If it had been terminal their would have been and end. But with narcolepsy and being with my mom all her life I knew that it would be an up hill fight everyday. I knew where I was at and I knew where I could and more than likely would go. I knew their would be times it would hide and that I would think I had beaten it, for it to only show it's self again, and more than likely be worse. I knew I would have good days and bad, I knew that at times I would have more bad than good. When they told me Narcolespy, being an L.P.N. I knew there was not that much to be found on it so I started search the sad part of it is that has not come all that far as when they told my mom she had it in 1950! Yes you heard me right 1950. They still do not know why, how, are what. So if the medical canot answer this why tear up this forum with alot of techinal stuff. If anyone of you so dare. I dare you to go back to the earlier forums and read see what I am telling you. When I started here I knew I could come and there would also be so one who would know where I was coming from and would have words of wisdom. All because they had been there and done that. I live in a family of non believers so I have nowhere to turn, no one to talk to. I live everyday wishing I could see my mom for 5 minutes just to say I'm sorry and that I understand. There are times I wish I were dead. I watch my girls and see things that are so much the things I did and pray to God everyday no not them too. Please don't let them half to go thru this .One is 23 and one is 25. I would bet my life they have it too. When most people come here first they are looking for answers, they are hurting they do not what all the deep medical stuff, they want simple answers, help, love, to know that someone cares. How can we ask people tounderstand, the world is moving so fast no one has time and we the narcolipics has even less time. We know if we get up an get to going that we really half to push ourself because when we stop we will shut down, for some it is harder than others. Most will push our selves hard on are off medication, then we will have crash and burn days. So please lets stick to the issue of being here for one another, not to fight and to fuss. Each one should know with us that even though we all have the samething each case can be so different. Thanks for all your time..take my dare go back an started reading. Almost every question that is asked has already been some where in forum 1 thru 6. Thank you Sandman , and to everyone who makes this possible for us narcs. To have somewhere to come to life our spirits.

Follow Ups:

• Re: The Forum Jade 5/01/00 (0)
• Re: The Forum Deb 4/30/00 (0)

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