I Am New....and Glad I Have Narcolepsy Because I Thought I Was Crazy
Posted 09 November 2010 - 09:51 AM
Posted 09 November 2010 - 04:53 PM
Posted 23 November 2010 - 04:33 PM
So it seems you've had your diagnosis for a while now, and you're still having trouble coping with it. I can't say that it will get easier for you, it may or may not. Some people are better equipped to deal with their illness and the symptoms. It's not that they are stronger or that you are weak, or even that your symptoms or better or worse than theirs are. The thing about N is that everyone experiences it differently, yet it's so similar for us all.
Really though, I am so saddened when I hear of another PWN (person w/ N) feeling so down. We all know what it's like because there are good days and bad days, but for most of us, it's mostly bad days. We aren't negative people, we aren't lazy, we aren't losers and abusers... We are lost in a world unknown to most. Everyone is confused in dream land, and that's basically where we all live.
I can't offer advice on children b/c I have none. You said you have three. How old are they? Male or female? I am heartbroken b/c I don't think I should have children w/ my illness the way it is. I honestly don't know where PWN's w/ kids get their strength.... but I wish I could find it. I'd like to have a family some day.
Your exp w/ provigil sounds similar to mine of nuvigil. Were you saying you are on Xyrem? I know it might be difficult for you, but what I do w/ the Nuvigil is take days off sometimes. Every week or two I take two days off of the pills. It's somewhat like I get a refresh. I've never experienced a recharge like the way I was when I first got the medicine... but it does make it work a little better. Also, diet and exercise.. I know, yeah right, exercise. But even if all you can do is get a bit of stretching in, it helps. It at least makes your muscles and bones feel a bit better.
It's a hard road you're on, but there are plenty of us right there with you.
Posted 23 November 2010 - 04:36 PM
P.S. think of being grumpy like your children. How do kids act when they are sleepy and in need of a nap? The same way we do when we are! So try your best to have patience with them
Posted 27 November 2010 - 10:01 PM
Wow I am so glad for this site, I need to find some people that I can relate to. I am 42 and was just finally diagnosed with Narcolepsy after years of them saying I was just lazy, depressed, I did have anemia- so that was an excuse for a while, and the list goes on...finally one of my pcp said I want you to have a sleep study I think you have sleep apnea...that is how the process started for me over a year and a half ago. I am currently on FMLA and applied for disability. Its so bad, I have three young children and I cant stay awake, I am always dragging from the sleep depravation so I am cranky, to say the least, nothing gets done, until I am having a good day and I am lucid enough to get to the store to buy them food, or go get my meds. I have like three calandars around the house. I have been on provigil for about two yrs now, which works some of the time in small bursts, I cant take more that two because my insurance wont cover it, and Xyrem but still the same. So frustrated...thanks...
Posted 27 November 2010 - 10:39 PM
Posted 28 December 2010 - 02:17 PM
With the kids, they are highly adaptable, your can teach them how to deal with you and your illness and most of all make clear that they are important to you and matter if it doesn't seem to. I know it's hard as a parent, in my case and an auntie, who used to be always for them, and now I can barely be there. If you involve them and ask them to help you in the llittle things, is enough for them to appreciate you as a parent and look up to you, like any kids would do.
Posted 01 February 2011 - 12:21 AM
Posted 15 April 2011 - 02:09 PM
Posted 26 August 2011 - 11:47 PM
In high school my teacher thought I was on drugs because I slept and sometimes slurred my speech. I am so slow like a turtle now, or at least I'm aware of it now thanks to Xyrem. Xyrem gets me that deep sleep so I can be awake enough to realize how tired I actually am. But I can now watch a whole movie and know what it's about!
I'm in need of some face to face understanding and going to try and start a support group here in FL! I can only stand to be on the computer so much.