With me it's the loneliness. The illness is completely crap but its the devastation it leaves you with. No friends, no visitor, no help. The loneliness is the worst thing that is incurable
Darkonarco: As it turns out I have epilepsy, and with not being able to work or drive the loneliness is the WORST part of it.
People/family disappear once you have a diagnosis like you are all better. Nine years now n I have no one. I live day to day hoping something will change. I’m sorry you feel lonely too n if there is anything I can do to stop that feeling for you I will.
Oh, wow y’all! What a sad way to be and to look at this like I can’t say I’m “sorry” cause that word will not help you. But I can say I’m “happy” cause that word will help you Here are the reasons I am happy for y’all.
- You are here.
- You are talking.
- You are awesome.
- You are helping other’s.
- Your encouraging.
- You are strong.
- You are not every alone we are here
Y’all are so much more then what you have. I know it’s not easy and I know we all have the time’s we don’t think we are strong. Also we have are sad time’s where we morn What we are not able to do in a day’s time. But we also have to find the joy in the small moments each day. Like yesterday I was looking at the cloud’s and saw a smile in the cloud’s. It just made me laugh and smile I can still work 4 day’s a week and drive. But I also have my thing’s that will stop me in my tracks. And I have to rethink how I’m doing something. But I look at it like a puzzle sometimes and I just have to find the right piece. I hope y’all can find the joy in the small moments
Thanks Rachel xx I do appreciate every second of every cos I know life is a precious gift n I’m grateful. Just sometimes I really need a hug or someone to talk to other than my dog n I am a nice person n help others all the time…just wish one day someone would reach out n give me contact cos I miss my old self/life so much at the moment. Could be cos its just hit nine years n I feel a bit lost n having the biggest ever pity parties know to man. Thank you for your time Rachel xxxxx
Maybe I will hug the postman when he comes next hahaha xxx
I firmly believe the only constant in life is change. If you learn to embrace it, to love the self others will follow.
HUG who ever you can! We all have gifts to give start giving you will feel so much better. Or at least this is what works for me.
I have to depend on a med ro get adequate sleep
I would say the worst part about narcolepsy and cataplexy is the unwillingness to learn about it. The unwillingness to help. Or the unwillingness to just not be a road block. I am lonely all the time. But then I encounter someone, a teacher, a teammate, random people who find me sleeping, and they have responses I can not understand.
I was told one day by a professor, who was aware of my condition, that if I was going to sleep, that I should just stop coming to class. I had a "best friend" who found it funny to leave me sleeping, alone, in a city a thousand miles away from my home. Lonely sucks but when people are unwilling it often means I shared this part of me with hopes that they may help me in some way, or at the least not stand in my way. But unwilling unfortunately really means that they know and they choose not too. I often feel betrayed.
But yes I am lonely too. I got over 100 likes on facebook when I finally spoke of my condition but not a single person has called or texted and said "hey do you need anything?'' or simply "how are you?''.
I honestly think is that they just don’t know they don’t know what to do so they choose to do nothing. It’s not because deep down in their heart they don’t care for us. It’s because they just don’t know what to do they don’t understand it they don’t know if they need to let us sleep or try to stimulate us they just don’t know. Because I was putting myself at risk falling asleep in the pickup truck on the side of the road I decided I would start going into banks specially the bank I bank at and I would tell the manager that I suffer from narcolepsy that I’ve took in my medicine and I need to go to sleep it seems like a dark cloud coming over my eyes it gives me enough warning to take action to do something about it but when the medicine isn’t going to work I have to close my eyes or if I’m already maxed out on my medicine because I take it set at a high dosage I can’t risk taking extra in the best thing for me is just to close my eyes for 30 minutes I go into the customer service area and of course I don’t sign in I put my cowgirl hat over my eyes and put my earphones in my ears and listen to a meditating power nap that I have on my phone. I want to be the thick skinned person and say I don’t give a rats but what other people think as long as I know I’m in a safe area to close my eyes and I’m not on the road to endanger anybody that is truly all that matters. As far as the professor goes the college is supposed to make accommodations for anybody with disabilities and one of the accommodations that I had was that I could record the classroom 4 if at any given time that I had to close my eyes I could go back and listen to the recorded conversation of the classroom and it’s not like I can not be stimulated if you had it more stimulated in the classroom then maybe I wouldn’t be falling asleep and for him saying maybe you shouldn’t even come to class is his own ignorant and he was lashing out because of other issues in his own life not him really truly thinking about your disability and that him as a professor is supposed to be accommodating to people with disability.
KathyJo, I wish that was the case. I wish it was just that they don't know what to do. I can accept that if they actually put in some initiative or even expressed that. But instead they ridicule me and make me feel guilty for even having the disorder. My mother refuses to accept it and tells me that I shouldn't either and my sister keeps telling me to just take my meds to keep me awake and find a job. Yes, she keeps forgetting that my doctor hasn't found a dose that works effectively yet. I'm still in the trial stage. That I am making excuses and just don't want to work. I'm pretty much suppose to act like it doesn't exist. I have sent them research links and asked them several times to just look into it more, but they won't. They don't even talk about it in depth with me. My dad will make jokes about my sleepiness, but won't hold a conversation about what it is doing to my life. My mom would yell at me or complain to me like I'm supposed to respond like everyone else. The only time they even show any inclination that I have the disorder or any concern over it is when I have to drive one of their cars. I mean really?
The only one I can say that understands more than anyone is my son, because he lived through it with me and he has his own sleeping disorder. But even though we can talk about how people don't understand our our sleeping disorders and how ridiculous they can be towards it, he still can't relate to the effects of my disorder and sometimes he is not that sympathetic either. I feel like I work more at understanding his and trying to make his life easier than he does for mine. Maybe it is because he is young male, I don't know. All I know is that he doesn't understand the experience of being sleepy all the time and not being able to stay awake, because he has the difficulty of not being able to go to sleep whenever he wants to. If he could get to sleep more often, his life would be simplified. Regardless, I am the only one he can vent to and he is the only one I can vent to, even with the differences.
-The worse thing about Narcolepsy and Cataplexy for me is the fact that a lot of people don’t know what it is and how it affects individuals differently. With my parents, my mom knows more and has witness more of my symptoms occur (because I was working with her at the time). And with my dad, I guess my cataplexy symptoms don’t happen as much. I had my learner’s permit when I was diagnosed, now my doctor recommended that I didn’t drive at the time. I have to say, I miss driving. I remember when I was doing my internship while studying for my associate’s degree and I was fired because they assumed I was on drugs as I was falling asleep on the job (This was before we knew I had narcolepsy). I feel the more you educate/share your story with people, the more they will want to learn about it (not all people, but most genuine people). I’ve shared my story on social media and got a lot of positive feedback and encouragement.