I was diagnosed a year ago and honestly, I still feel like I'm in denial. I don't want to take my medicine because I don't really think it's working at all. I got changed from Provigil to ritalin and feel miserable and out of it all the time. And the Xyrem affects my entire day. I don't know what to do and some days I just act like there's nothing wrong with me because deep down I don't want to admit I'm defective. I don't know what to do. I'm feeling depressed and lost. I can't feel excited about much anymore and I just want to go home after work and I start crying because I just don't know if I can stand this for the rest of my life. I'm only 22 and I feel there's no hope. Any advice? Everyone just keeps telling me to lose weight and I'll feel better. (I know I'm fat, 271 at 5'5".) But I just don't feel the like I have the energy to get up. I wake up 6 usually, and about 2 days a week I wake up at 5am to go to the gym and I still don't feel any better (30 lbs down). Any advice?
Diagnosed A Year Ago, But Still In Denial
Started by
nerkie
, Jul 18 2012 09:29 AM
3 replies to this topic
#1
nerkie
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Posted 18 July 2012 - 09:29 AM
#2
NikkiD
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Posted 18 July 2012 - 05:58 PM
I don't have much advice. All I can say is that I know exactly how you feel. I've been feeling very down lately. I don't have a diagnosis though, I'm still working on it. People just don't understand how hard it is living every day feeling like you didn't sleep a wink the night before, even if you did get a solid 8 hours. I had some pretty bad reactions to provigil, and then tried Ritalin. It was great for about a week - now it just make me feel 'off' (for lack of a better word) and doesn't help keep me awake.
There are so many things I want to get done but just can't work up the energy. So I'm taking things one day, one thing at a time. Right now, I'm getting the hang of cooking and eating clean, healthy meals and snacks. It's been one week and I'm doing ok. Next week, I'm going to start taking a walk in the morning. I used to have a gym membership but never really went because it was too much of a hassle. I was in really good shape a year ago, but stopped working out because I was just getting more and more tired.
I'm going to be laid off in a month and have no idea how i'm going to be able to find another job when I can barely work 5 hours. I'm also studying accounting at university, and I won't be able to afford tuition soon. Sigh. Life should not be this hard...
All I can say is keep trying, and don't be ashamed if you need to cry, it's better than keeping it all inside. Take any help you can get, and as hard as it can be sometimes.
There are so many things I want to get done but just can't work up the energy. So I'm taking things one day, one thing at a time. Right now, I'm getting the hang of cooking and eating clean, healthy meals and snacks. It's been one week and I'm doing ok. Next week, I'm going to start taking a walk in the morning. I used to have a gym membership but never really went because it was too much of a hassle. I was in really good shape a year ago, but stopped working out because I was just getting more and more tired.
I'm going to be laid off in a month and have no idea how i'm going to be able to find another job when I can barely work 5 hours. I'm also studying accounting at university, and I won't be able to afford tuition soon. Sigh. Life should not be this hard...
All I can say is keep trying, and don't be ashamed if you need to cry, it's better than keeping it all inside. Take any help you can get, and as hard as it can be sometimes.
#3
TNW
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Posted 30 July 2012 - 11:20 PM
nerkie,
30 lbs lost? That's AWESOME!
I've always felt like my husband is in denial. Only recently has he started treating himself like he has an incurable disease. When he was diagnosed 4 years ago, it didn't really seem to faze him much. It drove me nuts, because I had all these plans and opinions...
We're all defective. Everyone has some imperfection - internally or externally - we all have issues. I totally agree with NikkiD, if you need to cry, just let it go.
Hang in there!
30 lbs lost? That's AWESOME! I've always felt like my husband is in denial. Only recently has he started treating himself like he has an incurable disease. When he was diagnosed 4 years ago, it didn't really seem to faze him much. It drove me nuts, because I had all these plans and opinions...
We're all defective. Everyone has some imperfection - internally or externally - we all have issues. I totally agree with NikkiD, if you need to cry, just let it go.
Hang in there!
#4
Megssosleepy
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Posted 31 July 2012 - 01:32 PM
Nerkie,
Know that you are not alone, I dont really want to believe it all either. Even when the Doctor told me I couldnt believe it... being told for so long it was just our fault. The first step is being diagnosed, next step finding the drugs that work... I am still working on that one! 6 tries later and i am still not happy.
Any day that I have a hard time coping I come on here.(a lot lately) Its a shame everything that comes a long with this illness. Not only are we deadly tired we also are depressed ect ect... I find that reading others stories and how much worse some are, and how some have found ways to become better! Although we are frustrated right now one day I hope I will be the one giving good advise on how to move forward. Right now all I think about is permanent sleep.
Ive realized tho I have a job that can pay my bills and insurance that covers chunks of Dr. bill and meds. A desk job is such a bad idea! but, with the feeling of no hope and just wanting to sleep its hard to figure out what to do?
We must remember we are more fortunate then others in this world cursed with horrible diseases, I think what may make it harder for us is the feeling that no one gets it, no one who doesnt have N will ever truly understand. If it was cancer people would be so supportive, but being tired? no one gets it!
Im proud that you were able to loose 30lbs! that is really great, thats something to live for and strive for. Don't give up! If we give up then N wins...
Know that you are not alone, I dont really want to believe it all either. Even when the Doctor told me I couldnt believe it... being told for so long it was just our fault. The first step is being diagnosed, next step finding the drugs that work... I am still working on that one! 6 tries later and i am still not happy.
Any day that I have a hard time coping I come on here.(a lot lately) Its a shame everything that comes a long with this illness. Not only are we deadly tired we also are depressed ect ect... I find that reading others stories and how much worse some are, and how some have found ways to become better! Although we are frustrated right now one day I hope I will be the one giving good advise on how to move forward. Right now all I think about is permanent sleep.
Ive realized tho I have a job that can pay my bills and insurance that covers chunks of Dr. bill and meds. A desk job is such a bad idea! but, with the feeling of no hope and just wanting to sleep its hard to figure out what to do?
We must remember we are more fortunate then others in this world cursed with horrible diseases, I think what may make it harder for us is the feeling that no one gets it, no one who doesnt have N will ever truly understand. If it was cancer people would be so supportive, but being tired? no one gets it!
Im proud that you were able to loose 30lbs! that is really great, thats something to live for and strive for. Don't give up! If we give up then N wins...
