Living Life


I'm new to this website. I was diagnosed with narcolepsy in the Fall of 2012. I will be a senior in college this coming fall and I am EXTREMELY EXCITED to graduate. I have been to three different colleges and am a year behind but i refuse to give up school. I will be the first in my family to play a sport and graduate from a 4 year college. THEREFORE, I have to make it! That will be one of the best feelings for me, as well as making my parents proud. That is all I want. To. Make. Them. Proud.

Lately, I have been struggling. BIG time. :(

I have had some of the worst anxiety lately and I cannot step in public without having an anxiety attack. It has come to the point that I refuse to drive my car (mainly because it's stick shift) and because I am in fear of getting in a wreck.

This is not the life I want to live!! I was just trying to find people to talk/ chat with over narcolepsy, as it can be very hard to hold a conversation with my boyfriend and mom as they don't always understand what I feel and what I am going through. I know they are trying their best to help me out and understand me, but at times I just feel as if they are against what I have to say. It's FRUSTRATING. My biggest wish is to become sucessful but in a way that doesn't involve money.

I want to help others out by using the experiences i've gained from the many medications i've tried. I would never place this life upon anyone else, nor would I trade up having narcolepsy for the world. Having narcolepsy has led me to become the woman I am today, and underneath the narcoleptic feelings of anxiety and depression (despite the medicines), I know there is a spot of happiness that I'll someday discover.

------^^^ (I wanted to use unbury (SP?) but I guess it's not a word?) LOL-- My life, I can shut my eyes and think of wonderful ways to write/say things and the minute I write them down, I've beaten my pencils eraser to the bone second guessing myself on how the word should be spelled or written (or whatever).

I don't have the best grammar, I'm not great at writing stories, although I'm great at rambling out loud (about which medication I think is working and which isn't) when I have anxiety. BUT... that annoys poeple, because everyone has problems of their own. :( I'm just looking for friend to talk to about narcolepsy.

I want to write more but honestly I am all jumbled up right now.

Welcome Carson! Great introduction and I see no problems with your grammar ;-) You can be proud of yourself for having gone so far already. The road to success is full of hurdles but if you keep your great spirit and resilience, you'll manage to travel it and make the best of every step on your way.

Hello Carson!
Welcome and thank you for writing so honestly. I think many struggle with the “word” thing. Sometimes my speach is affected.
What you wrote made me think about “trading it away”. There are days that I would be tempted to do so. But narcolepsy, has changed in a kinder way, how I deal with people.

But it’s frustrating dealing with an “invisible” disability.

Thank you for introducing your self, great attitude and outlook - these are major :slight_smile:


Welcome Carson! Excited to have you on board. I was diagnosed in 2011 and I won’t lie to you this road hasn’t been easy, I have good days and bad days but I take the good with the bad and I continue to fight through the anxiety and extreme fatigue. The one thing that I will tell you is I will not let narcolepsy control my life, I will never give up this fight I will give out before I ever give up. Stay strong and no matter how hard it gets Carson you hang in there and you continue to fight. :slight_smile: And one last thing I know how you feel about your love ones seem as if they don’t understand what your going through I been there with my own family, but in reality only someone that’s battling this debilitating disease truly know how you feel, also keep in mind when we are diagnosed with this disease it changes or lives completely, but it also changes or love ones lives they have to learn how to deal with us in a whole new way. And remember it’s called an invisible disease so when people look at us they can’t tell that we are battling narcolepsy, they see us as normal as they are. Stay strong and keep your head up best wishes to you and your family.

Hi Carson…
Reading what you wrote I definitely can understand how you feel! I was diagnosed last month but have had narcolepsy since childhood. I feel like I also have no one to talk to that can truly understand the constant obstacles we go through. I’m 23 and had a great management position and was demoted because of my diagnosis even though I had no performance issues. So now I am on stress leave because I truly can not bear going back to my department when it’s not mine anymore. Also a huge pay cut. But I am looking for another job . Going from being proud of myself and buying my first car and feeling like I was at the top of my game (even pushing through my untreated narcolepsy) to being tossed in the trash because of something I can not control…has left me feeling like I hit rock bottom. Which is why I joined this group. So I’m here for you! Feel free to reach out . I wish you success!

Carson, I’m really excited about you being so close to finishing college! I’m sorry about the anxiety you’re feeling - it can really get in the way but if you’ve made it this far you’ll be able to get through this part, too. Maybe the excitement itself has something to do with it. I will support you no matter what because school is not easy and I respect your determination and perseverance! I loved school, especially when it was over, but I’ve been back a few times for a little more. It’s a challenge!

I don’t know if you told your doctor about how you’re feeling but please do. I wish you didn’t have anxiety right now. You must be wanting to finish and probably didn’t expect to feel this way at all.

I know people with narcolepsy can understand it, and a few people who care to educate themselves about it understand the science and treatment as well as the disruption it can cause. But wishing another person will understand is dicey. You can provide information and tell them how it can disrupt your life. They may make the effort to learn. I hope you’ll like being a member of this group - we’re glad you’re here!

I’m curious about what you like to study. Maybe you found some school strategies that worked for you. I’d love to hear more from you. Take care, good luck, and congratulations for all that you have and will accomplish!

To everyone that has responded,

I'm very sorry it's taken me this long to respond. I've been uninterested and disconnected from "life" lately. I am currently sitting in class and this forum popped up in my head. I think it was a sign because as I read each and every one of your responses, little tears began to fall from my eyes. These past couple of weeks have been miserable and what everyone sent back to me has boosted my faith and has pushed me away from wanting to just give up. (Give up as in quit taking every medicine and go from there). Surprisingly, the anxiety has subsided due to discontinuation of one of my medicines (which I think) but the fatigue has increased (which I believe is due to my thyroid going hypo- again as well as weaning off of a bi-polar medicine... which I really don't claim having). :(

You all have given me that hope I've been looking for these past couple of weeks and I wish I could give each and every single one of you a giant hug. These are tears of JOY. Let me repeat that.. JOY (which lately the tears I've been having have been far from that).

I am grateful for the opportunity to be a member here as some may not know about this website (but I sure am telling others about it). I really just cannot thank you all enough for the responses. It has put a smile on face. A smile that I will pass on to others as I pass them today in hope that they'll smile too (if not smiling already).

I've talked with my Doctor(s)-- Neurologist, Endocrinologist, Psychiatrist et al., (LOL I'm in English class, SP?, had to), and it just seems as if something from some other medicine prescribed by another Doctor is the problem. I know it will take some time as far as adjusting to new medicines as well as the possible side effects of discontinuing others, but at night I just feel like what's next? I feel there is no routine in my life, something is always changing... but with the faith and support I have received from my new friends (you all :D) I believe I will find one eventually.

So thank you, thank you all for taking the time to respond. You never know how far a little message from someone else with the same disorder as you can go. Or even the people that are interested/lending support for someone makes a difference. This has made a difference in me. I am now one step closer to succeeding than I was an hour ago because of you all!


Keep strong!

Wow Carson! Hi I’m very new here. I was reading about you second guessing the grammar. I was jumping inside… Cause I deal with the same thing. Some time’s I get upset cause I can’t think to spell a word. But then I stomp my foot and say oh well. I just put what I think is right, ask someone or look to find where I saw the word before. I also understand the anxiety. When I was trying to join here. Just writing about myself was not easy. I erased what I said and then would write it again. I’m so happy you are fighting the inside battle and talking. Thank you for reading what I had to say.