Narcolepsy Support Group

Once upon a time I had endless energy...I keep reminding myself to be realistic and that no meds are going to make me the way I remember myself. Then again I don't want to settle for anything less then as much energy...as much livin' as I can squeeze out of this body...

I share your feelings.

This is a tough one as it was so long ago. I was a very sporty, healthy, smart 14yr old. I think that's one of the things I find so incredibly frustrating. It's a case of what could I have been if I hadn't been blighted by N&C.

How do you ever really accept this? I've tried so hard to not feel angry about it. I still find myself wanting to do things I know I can't and I really, really, hate that. I've been told I can achieve what ever I put my mind to. To be honest I'd like to poke that person in the eye because it's nonsense. I've tried it and my body is willing but my mind not.

It also drives me crazy that the general population look at me and see a normal person, maybe slightly wired from the meds sometimes. That is also very frustrating as they have no idea what I'm going through.

All my faith is in science in the hope that they can find some kind of synthetic hypocretin replacement.

Last time I remember having a normal existence I was abouy 16-17 years old. I was angst-ridden but still enjoyed every moment of my life. Lost a lot of friends when my energy was sucked out of me. At that age, you are only a friend if you're fun to be with and up for anything. Guess they weren't very good friends anyway.
That was long ago and I tend not to think about it. I don't wish to be resentful and thoughts of then tend to make me bitter.
This is now. It's not so bad. At least I'm not angst-ridden any more (though that had it's fun factor to it, too).

Not that long ago (2 years) I was full of energy. I love to work in my flowers, and I was always doing something in my house, I would paint an entire room in just 2 days, I could go shopping all day on Saturday and be ready to go out that night. I was hardly ever home,between church activities, and going places with the grand kids and my husband. Now I leave the house for work and church, and when I go shopping it's to get what I need and come home. My meds are working okay but I am a shell of what I used to be. I agree with Andrew,people look at you and you look normal so they think you are just lazy. I am working on learning my limitations and not feeling guilty about them

It really stinks when I look back to just a few years ago and remember all I was able to do in just a 24 hour period! What now takes me a week, I could do in a day!

In a day I cleaned and did yard work, I cooked dinner (somtimes more than one at a time for the next day), I could get my daughter to school and back on time with no worries, Took care of a husband going through sever medical treatments, and worked all day...WITH NO PROBLEM.

I also was able to have holiday dinners and such with our entire family over, I would start preparing 2-3 days ahead of time too. I could think and work at the SAME TIME! I could spell better, read better, concentrate better, heck...I could walk better!!

Now it seems each day blends to the next and I can not remember anything. I am too worn out to even think somedays, let alone even think of being as on top of things like I used too. (sigh) ...

I am trying to work now on staying positive and looking for the good in every situation. I try to use any time awake and half alert with my family. I am trying to stop feeling so guilty about what I cannot do and take it day by day. I keep telling myself that there are people who have it so much worse than me in life. I am trying to be thankful for what I do have instead of always thinking about the things I cannot change. It has been very hard, much harder than I thought, but slowly my attitude is getting better. I have my days still that are full of guilt and anger for what N has made me. I am still me though, and you are still you! You can only do so much in any given day...regardless of what it is, be proud of yourself!

Try to laugh as much as possible, find humor in at least one thing per day (not hard for me because kids are hilarious), and give yourself a pat on the back for at least one thing you do each day. I am currently in your exact situation...and it sucks! The guilt of being a "bad" parent has had me in such a state I can't explain it. That is why I have to force myself to do the things I just mentioned, if not for me, than at least for my childrens sake. They deserve to see me smile everyday (even if it was forced) and they deserve to watch me deal with N in a positive way. I am their role model and that is what is kicking my whole self into trying to stay positive through all of this.

I hope you can find a smile today and plaster it to your face...and I wish you the best! From one N mom to another, I think you are awesome! ( i bet your kids do too!) Good luck and happy smiling to you Hannah, LOL! Anytime you need to chat, please let me know! I would love to share mom stories with you as well as N issues. We have it double hard being a woman with N and being a mother at the same time. If we can do that (even semi-successfully) I think we deserve a medal!!!

Keep me posted!

Julieanne

i would have done the house work the garden the food shopping done dinner basicly flying around all day, the only flying i do now are in my wierd dreams. I used to be more sociable, now i just go out for whats needed then back home again.
My moods are not very good now either i have no patience everyhthing is now a chore.

thank u all , and thanx julieanne ,:) guess we have all changed a hell of alot

who ever said change is good needs to be in our shoes for one day! The type of change we all had to make when N came to our door is not one I would wish on anyone!

I was about 21 years old when my narcolepsy kicked in full, and before that I can't say I was the happiest person in the world but at least I was awake and able to do normal day to day activities. Activities that seem almost impossible now.

Since discovering that I am narcoleptic, I have been through many changes and even a tragic accident which has left me with the life long feeling of guilt. Anyhow, I must say that I like who I have become through everything, I just wish I could be this person awake! Sometimes its hard for me to differentiate my narcolepsy from laziness which makes me feel kind of confused. I hate the fact that every time I awaken from one of my many naps in the day that I am a complete grouch. And everyone around me has to get a taste of it.
I am going to school and trying to become an X ray technician. Studying is very difficult because everytime I start reading I end up dosing off. I have been accepted into a 2 year program but i am very afraid that I will not be able to complete it do to my narcolepsy. What do I do?? I try.... and we'll see.

Regardless of how much the sleepiness gets to me, I still wake up and give thanks for being alive..... life's short, we'll be gone soon, so we may as well deal with what we have and make the best of it.

I had some symptoms all my life, but before it got really bad at 17-18... let's see, I played sports up until sophomore year when I just lost all my energy-- could even do my cross country practices (but lacked the energy to compete by that point). I worked most days after school but still managed a honors. Did band. Did math team. French Club. Art class. Managed the track team (my daddy was the coach! *proud puff*) I spent a lot of time outside and in the sun. My last summer of energy (didn't know it would be then!) I worked 11 days on 2 days off at a camp for disabled children and adults. College took the rest out of me. Managed to stay afloat for a little while but didn't do well and then started being unable to work by 19 and 20.

Here I am now, diagnosed and working on being medicated. Back to school and working occasionally at the school. Grades are back up to Dean's List (although I still have a little ways if I want to get my Latin Honors). I manage to keep up with the housework most of the time, although sometimes in between the house can get slightly grungy.

So I've done a bit of a fall, a climb back up and am kinda at a plateau at the moment. Could be worse. I feel lucky to be where I am at as opposed to where I was, that's for sure!! :)