20 replies to this topic

[malachi777]

There is no cure for narcolepsy, but this condition can be somewhat controlled to allow the individual to live a halfway descent life. If you take a nap on a daily basis, even if it is fifteen minutes, it will make a big difference in your life. Life will never be as normal as others, but rather than narcolepsy having control of you, you will have control if it.

We all go through the dark realm of feeling sorry for ourselves. It is very important to get over the despair and work around the issue of sleep. We do not live in a twenty four hour day, ours is quite shorter. This is a reality we need to face and understand.

We have a condition that requires a schedule, but look at the benefits. Narcolepsy is not a fatal condition in its own right. Without being responsible and doing everything in your power to control it, it can lead to harm. This is why I feel it is important to plan our life around sleep. One day, this condition will be cured. Another benefit, we can sleep no matter what position we are in.

Don't get me wrong here, living with narcolepsy does suck, but it really could be worse. It could be cancer, HIV, ALS, Alzheimer's or numerous other fatal conditions. Narcolepsy is not a death warrant, it is more a life living without an essential body part, such as a leg or an arm. The good news is the fact that we have tools to help us get by.

I went through the phases of denial, anger, sadness, acceptance, all in a period of two years. Now, I have decided to work hard and just accept that I have to walk around the walls that I can no longer climb. Things really could be much worse in our lives.

It is also important to understand that our family and friends will never completely understand our condition. Unless you live with this condition, you will never get a grasp on how we feel. I made a decision to talk very little about narcolepsy. By doing this, all my friends have come back around and they like to hang out again. I can understand why they avoided me in the past. I never threw positive energy back then. I always drowned them in my problems. This negative energy takes a toll on our friends and family. More importantly, it is a poison to us.

There will be some who disagree with some of my beliefs and I completely understand. I just want others to know, although I am a narcoleptic, I will only let it take one part of my life. I will not allow it to take control of every realm of my life. Do not live with narcolepsy, let it live with you.

[ulooktired]

There is no cure for narcolepsy, but this condition can be somewhat controlled to allow the individual to live a halfway descent life. If you take a nap on a daily basis, even if it is fifteen minutes, it will make a big difference in your life. Life will never be as normal as others, but rather than narcolepsy having control of you, you will have control if it.

We all go through the dark realm of feeling sorry for ourselves. It is very important to get over the despair and work around the issue of sleep. We do not live in a twenty four hour day, ours is quite shorter. This is a reality we need to face and understand.

We have a condition that requires a schedule, but look at the benefits. Narcolepsy is not a fatal condition in its own right. Without being responsible and doing everything in your power to control it, it can lead to harm. This is why I feel it is important to plan our life around sleep. One day, this condition will be cured. Another benefit, we can sleep no matter what position we are in.

Don't get me wrong here, living with narcolepsy does suck, but it really could be worse. It could be cancer, HIV, ALS, Alzheimer's or numerous other fatal conditions. Narcolepsy is not a death warrant, it is more a life living without an essential body part, such as a leg or an arm. The good news is the fact that we have tools to help us get by.

I went through the phases of denial, anger, sadness, acceptance, all in a period of two years. Now, I have decided to work hard and just accept that I have to walk around the walls that I can no longer climb. Things really could be much worse in our lives.

It is also important to understand that our family and friends will never completely understand our condition. Unless you live with this condition, you will never get a grasp on how we feel. I made a decision to talk very little about narcolepsy. By doing this, all my friends have come back around and they like to hang out again. I can understand why they avoided me in the past. I never threw positive energy back then. I always drowned them in my problems. This negative energy takes a toll on our friends and family. More importantly, it is a poison to us.

There will be some who disagree with some of my beliefs and I completely understand. I just want others to know, although I am a narcoleptic, I will only let it take one part of my life. I will not allow it to take control of every realm of my life. Do not live with narcolepsy, let it live with you.

Thanks, it sure is tough sometimes!

[hathor]

thank you for writing that. i love coming to this site bt u are the first person i have seen who has said it. i tell people i have narcolepsy i dont have a problem with it. it is part of who i am. i have had it so long i dont know what it is like to not have have it. people often say sorry to hear that i have it bt i find it difficult to understand why they say that. there is nothing wrong with me apart from the N and C. i have both my legs and both my arms, i can see and hear and dont have a painful illness. i am grateful for that. there is so many illnesses that i could have that are very cruel ones, bt i havent i just have narcolepsy. i can be difficult sometimes bt isnt life? nobody is perfect there is no such thing as a perfect person, having N and C is just one of my inperfections. i have learnt to live with and as i said i am grateful all the time that is all i have wrong with me and not some cruel illness or physical painful disability.

[malachi777]

thank you for writing that. i love coming to this site bt u are the first person i have seen who has said it. i tell people i have narcolepsy i dont have a problem with it. it is part of who i am. i have had it so long i dont know what it is like to not have have it. people often say sorry to hear that i have it bt i find it difficult to understand why they say that. there is nothing wrong with me apart from the N and C. i have both my legs and both my arms, i can see and hear and dont have a painful illness. i am grateful for that. there is so many illnesses that i could have that are very cruel ones, bt i havent i just have narcolepsy. i can be difficult sometimes bt isnt life? nobody is perfect there is no such thing as a perfect person, having N and C is just one of my inperfections. i have learnt to live with and as i said i am grateful all the time that is all i have wrong with me and not some cruel illness or physical painful disability.

Thank you Hathor,

You know, I decided to write this not to anger others, but to allow them to see how non-narcoleptics see us. After spending a lot of time on here reading many comments, I have noticed that I quickly skim past the extremely negative ones. I only do this because I am looking for something positive in my life. I believe negative energy brings us all down. Don't misunderstand me, I like to read and reply to those who are upset about something, like family, doctors, or friends. Those are fine, I just try to avoid the one's that go on and on. I do not want to sound like I lack compassion because I am very compassionate and passionate about life.

I was born with extremely deformed legs and was not able to walk until braces were put on my legs and I lived with them for 3 years. I know what it is like to want to do something, but cannot because I had to drag my body where I wanted to go. Thankfully, after many years of therapy, I could not only walk but became one of the fastest runners in my high school. You would never guess I had any problems with my legs now, although doctors said i may need a hip replacement when I get older.

I was inspired to write to others about this subject to help them to accept and be at piece with their condition and live their lives around narcolepsy. Thank you for your positive comments. Mike

[hathor]

Thank you Hathor,

You know, I decided to write this not to anger others, but to allow them to see how non-narcoleptics see us. After spending a lot of time on here reading many comments, I have noticed that I quickly skim past the extremely negative ones. I only do this because I am looking for something positive in my life. I believe negative energy brings us all down. Don't misunderstand me, I like to read and reply to those who are upset about something, like family, doctors, or friends. Those are fine, I just try to avoid the one's that go on and on. I do not want to sound like I lack compassion because I am very compassionate and passionate about life.

I was born with extremely deformed legs and was not able to walk until braces were put on my legs and I lived with them for 3 years. I know what it is like to want to do something, but cannot because I had to drag my body where I wanted to go. Thankfully, after many years of therapy, I could not only walk but became one of the fastest runners in my high school. You would never guess I had any problems with my legs now, although doctors said i may need a hip replacement when I get older.

I was inspired to write to others about this subject to help them to accept and be at piece with their condition and live their lives around narcolepsy. Thank you for your positive comments. Mike

lol no need to thank me i just agree with u. im glad to hear your legs are fine now i imagine you must have learnt a lot from having the problems with your legs wether you know it or not. i believe every experience in life can make a person a better person if they allow it to even the bad ones can teach alot of lessons. theres no point in dwelling on things when we can just move on and learn from it. life is too short. im a happy person so i dont like miserable people coming in to my home i cant deal with people crying etc. the longer a person dwells on a problem the longer it last and the worse it seems. i have N and C. i have C attacks so offten i cant put a number on it and my sleeping/awake pattern is roughly every 4 hours i need to sleep for up to 4 hours. But i still have a normal life. i look after children regularly for friends and am like a second mum to my neice i have looked after her so much. i have proper nights out with friends every weekend. i live on my own bt i know my limits and how to stay safe its basically common sense dont lie in the bath lots of naps etc. and it all works fine for me. meds disagree with me and i havent found any im happy with so i dont bother with them i dont like pills anyway. i cant hold down a job and it gets boring sometimes but im going back to college full time in september anyway. the staff there know about my sleeping probs and dont treat me any diff bt are ok if i need to go wake myself up.plus going back to college as adult learner i get extra respect anyway so i suppose the N and C is giving me the advantage on that one!!im doing travel and tourism and hopefully one day i will get a job in this or use what i learn to travel. as you say im not living with narcolepsy its living with me. all that said i do love coming to this website knowing there is people there with the same problems as me just incase i do need to know something or have a rant with people who just know what im on about.

[malachi777]

lol no need to thank me i just agree with u. im glad to hear your legs are fine now i imagine you must have learnt a lot from having the problems with your legs wether you know it or not. i believe every experience in life can make a person a better person if they allow it to even the bad ones can teach alot of lessons. theres no point in dwelling on things when we can just move on and learn from it. life is too short. im a happy person so i dont like miserable people coming in to my home i cant deal with people crying etc. the longer a person dwells on a problem the longer it last and the worse it seems. i have N and C. i have C attacks so offten i cant put a number on it and my sleeping/awake pattern is roughly every 4 hours i need to sleep for up to 4 hours. But i still have a normal life. i look after children regularly for friends and am like a second mum to my neice i have looked after her so much. i have proper nights out with friends every weekend. i live on my own bt i know my limits and how to stay safe its basically common sense dont lie in the bath lots of naps etc. and it all works fine for me. meds disagree with me and i havent found any im happy with so i dont bother with them i dont like pills anyway. i cant hold down a job and it gets boring sometimes but im going back to college full time in september anyway. the staff there know about my sleeping probs and dont treat me any diff bt are ok if i need to go wake myself up.plus going back to college as adult learner i get extra respect anyway so i suppose the N and C is giving me the advantage on that one!!im doing travel and tourism and hopefully one day i will get a job in this or use what i learn to travel. as you say im not living with narcolepsy its living with me. all that said i do love coming to this website knowing there is people there with the same problems as me just incase i do need to know something or have a rant with people who just know what im on about.

Hathor, Believe it or not, you have inspired me and I am sure your comments will inspire others who read this thread. It is great that you look at all realms of your life before you judge it as a whole. You have life, love, friends, family and so much more. This is reason enough to be happy and work around your disability. As I stated before, I still get sad, angry and self pity, but it is short lasting and circumstantial. Take care of yourself.

By the way, I learned one thing about being crippled in my childhood, kids are mean! They called me robot boy and some beat me up and took the braces off me, and threw them in the ditch. It is quite fine though, I got revenge on all but one in middle and high school. It made me fearless and really tough.

[BaRb79]

There is no cure for narcolepsy, but this condition can be somewhat controlled to allow the individual to live a halfway descent life. If you take a nap on a daily basis, even if it is fifteen minutes, it will make a big difference in your life. Life will never be as normal as others, but rather than narcolepsy having control of you, you will have control if it.

We all go through the dark realm of feeling sorry for ourselves. It is very important to get over the despair and work around the issue of sleep. We do not live in a twenty four hour day, ours is quite shorter. This is a reality we need to face and understand.

We have a condition that requires a schedule, but look at the benefits. Narcolepsy is not a fatal condition in its own right. Without being responsible and doing everything in your power to control it, it can lead to harm. This is why I feel it is important to plan our life around sleep. One day, this condition will be cured. Another benefit, we can sleep no matter what position we are in.

Don't get me wrong here, living with narcolepsy does suck, but it really could be worse. It could be cancer, HIV, ALS, Alzheimer's or numerous other fatal conditions. Narcolepsy is not a death warrant, it is more a life living without an essential body part, such as a leg or an arm. The good news is the fact that we have tools to help us get by.

I went through the phases of denial, anger, sadness, acceptance, all in a period of two years. Now, I have decided to work hard and just accept that I have to walk around the walls that I can no longer climb. Things really could be much worse in our lives.

It is also important to understand that our family and friends will never completely understand our condition. Unless you live with this condition, you will never get a grasp on how we feel. I made a decision to talk very little about narcolepsy. By doing this, all my friends have come back around and they like to hang out again. I can understand why they avoided me in the past. I never threw positive energy back then. I always drowned them in my problems. This negative energy takes a toll on our friends and family. More importantly, it is a poison to us.

There will be some who disagree with some of my beliefs and I completely understand. I just want others to know, although I am a narcoleptic, I will only let it take one part of my life. I will not allow it to take control of every realm of my life. Do not live with narcolepsy, let it live with you.

Well put!!
I found out in January of this year that I have N with C and SP. It was rough at first. I'm in the acceptance stage now. I have decided that I wouldn't be who I am without it and that as long as I take my meds and sleep when I can I'm better. My friends just laugh and alot of them think it's really interesting. But I don't try to hide it. Sometimes I think we think we need to keep it a big secret...WHY? I'm very open, but that works for me. But with me being open that gives people a chance to ask me questions and a chance for me to tell them it's not just the crap you see on tv. I have decided that if I don't tell them who else will..Just have fun with it!!

[malachi777]

Well put!!
I found out in January of this year that I have N with C and SP. It was rough at first. I'm in the acceptance stage now. I have decided that I wouldn't be who I am without it and that as long as I take my meds and sleep when I can I'm better. My friends just laugh and alot of them think it's really interesting. But I don't try to hide it. Sometimes I think we think we need to keep it a big secret...WHY? I'm very open, but that works for me. But with me being open that gives people a chance to ask me questions and a chance for me to tell them it's not just the crap you see on tv. I have decided that if I don't tell them who else will..Just have fun with it!!

Good for you BaRb. Keep your head up, my friend. Don't kick yourself when you get upset about it at times, just get over it as soon as you can. If you would like to read my blogs too, you can find them here...

http://narcolepticized.blogspot.com/

[sleepless sleeper]

thank you for writing that. i love coming to this site bt u are the first person i have seen who has said it. i tell people i have narcolepsy i dont have a problem with it. it is part of who i am. i have had it so long i dont know what it is like to not have have it. people often say sorry to hear that i have it bt i find it difficult to understand why they say that. there is nothing wrong with me apart from the N and C. i have both my legs and both my arms, i can see and hear and dont have a painful illness. i am grateful for that. there is so many illnesses that i could have that are very cruel ones, bt i havent i just have narcolepsy. i can be difficult sometimes bt isnt life? nobody is perfect there is no such thing as a perfect person, having N and C is just one of my inperfections. i have learnt to live with and as i said i am grateful all the time that is all i have wrong with me and not some cruel illness or physical painful disability.

No there are others, but Malachi is the first in a while. I'm not trying to belittle Malachi because it is wonderful for him to post this. This new post is needed for people that are not regulars or they are new. I am saying this also because there are people here that I want to make sure that they get recognition , too. Stu is one and MikeM is another. Their attitudes are always appreciated even though they haven't been posting lately - where are you guys? It is wonderful having Malachi here to pick up where they have left off.

THANKS MALACHI

[hathor]

No there are others, but Malachi is the first in a while. I'm not trying to belittle Malachi because it is wonderful for him to post this. This new post is needed for people that are not regulars or they are new. I am saying this also because there are people here that I want to make sure that they get recognition , too. Stu is one and MikeM is another. Their attitudes are always appreciated even though they haven't been posting lately - where are you guys? It is wonderful having Malachi here to pick up where they have left off.

THANKS MALACHI

well im glad to hear that there are more people who think the same. there is proberbly a whole load of people who are members of this site but dont post. ive noticed its regular names that come on the boards. i just hope some of the people that dont post still read and learn. i gather that the people on here are from all over specially america bt i still love coming here. until i found u lot i had never spoke to anyone with narcolepsy before. It is so unheard of in the UK that even most of my doctors think they have never heard of it!!
i manage ok with my N and C aswell as i can do anyway but it has made it even better knowing that im not on my own. nearly 30 yrs is along time to have a medical condition and for no one to really understand what it is like.
so thanks you to everyone on this site that does post because it does help just to know other people have the same conditions!!!!

[malachi777]

well im glad to hear that there are more people who think the same. there is proberbly a whole load of people who are members of this site but dont post. ive noticed its regular names that come on the boards. i just hope some of the people that dont post still read and learn. i gather that the people on here are from all over specially america bt i still love coming here. until i found u lot i had never spoke to anyone with narcolepsy before. It is so unheard of in the UK that even most of my doctors think they have never heard of it!!
i manage ok with my N and C aswell as i can do anyway but it has made it even better knowing that im not on my own. nearly 30 yrs is along time to have a medical condition and for no one to really understand what it is like.
so thanks you to everyone on this site that does post because it does help just to know other people have the same conditions!!!!

I was diagnosed with tachycardia, narcolepsy, cataplexy and a new disease called coolnsexy. The coolnsexy disease sucks because everyone stares at me and it makes me uncomfortable. Just wanted to make myself laugh today. I can care less what you guys think....Sorry, that wasn't nice. Gonna put myself in the corner until I understand what I said was wrong.

[sleepless sleeper]

The positive attitude and encouragement is needed. But please also remember that people come here to vent, also. NN is a coping place that is found no where else other than other narcolepsy support sites. It is absolutely awesome to have these posts because they are greatly needed, but remember that reading other pwn's posts that are "negative" is what is needed also. Don't forget our brothers and sisters are posting because they 1) need to express themselves to cope, and 2) need feedback. That is actually an excellent place to reply with your words of encouragement!

We are usually our own support system. We are usually our own love. We are usually our own understanding. We are usually our own encouragement and family. Stand together and lift one another. Support is needed by paying attention to what each of us have to say, especially even when we don't agree.

Life is good. Life is bad. Postings will ebb and flow likewise.

MikeM posted in his blog and on fb that Narcolepsy is his friend. I like that. Who else would have come up with that? What an amazing way to look at this disease that will never go away. Not as an unwelcome house guest that won't pack their bags, but as a lifelong friend. Awesome.

[malachi777]

[quote name='hathor' date='May 12 2009, 09:21 AM' post='9970']
well im glad to hear that there are more people who think the same. there is proberbly a whole load of people who are members of this site but dont post. ive noticed its regular names that come on the boards. i just hope some of the people that dont post still read and learn. i gather that the people on here are from all over specially america bt i still love coming here. until i found u lot i had never spoke to anyone with narcolepsy before. It is so unheard of in the UK that even most of my doctors think they have never heard of it!!
i manage ok with my N and C aswell as i can do anyway but it has made it even better knowing that im not on my own. nearly 30 yrs is along time to have a medical condition and for no one to really understand what it is like.
so thanks you to everyone on this site that does post because it does help just to know other people have the same conditions!!!!

Hathor, Have you had narcolepsy for 30 years. If so, how have you coped this long? Just so you feel better, I want you to pick on me and tease me all you can. I never take things personal since I am a joker too. Laughter is the best medicine for us. So you are from the UK? What part?

[hathor]

Hathor, Have you had narcolepsy for 30 years. If so, how have you coped this long? Just so you feel better, I want you to pick on me and tease me all you can. I never take things personal since I am a joker too. Laughter is the best medicine for us. So you are from the UK? What part?
[/quote]

i live in northumberland in a little fishing village. i have had narcolepsy most of my life and i was diagnosed with cataplexy before i even knew what it was so i was about 16.
im lucky so far apart from these 2 i dont have any other medical problems.
i love laughing i recently met a bloke who couldnt believe how happy a person i was.i never realized i gave that impression to people he surprised me when he said it cause ive spent half my life trying nt to laugh cause of the C!! i think i have managed so long by being honest with myself and people about it. i learn my limits and have common sense. i still have problems and accidents bt nothing to dwell on.
so u want me to pick on u? lol im too nice a person to do that.i pick on my best friend all the time tho for being short bt ive known her for 10 yrs now.



[/quote]
The positive attitude and encouragement is needed. But please also remember that people come here to vent, also. NN is a coping place that is found no where else other than other narcolepsy support sites. It is absolutely awesome to have these posts because they are greatly needed, but remember that reading other pwn's posts that are "negative" is what is needed also. Don't forget our brothers and sisters are posting because they 1) need to express themselves to cope, and 2) need feedback. That is actually an excellent place to reply with your words of encouragement!

this is very true. people do need to vent somewhere. i think i have proberbly even had a go myself somewhere on here. this is a good place to let off steam with people who can relate in some way. it is ok for people to feel negative at some point in their life. but as long as there is positive people as well then they should know that things can and do get better. i was ok with my N and C when i joined this group bt i have learnt so much from u lot i didnt think i could it has made me feel even better about it which for me is a really big thing because in the past i have had issues with the cataplexy and never speaking to anyone with it before was so frustrating!!

[malachi777]

Hathor, Have you had narcolepsy for 30 years. If so, how have you coped this long? Just so you feel better, I want you to pick on me and tease me all you can. I never take things personal since I am a joker too. Laughter is the best medicine for us. So you are from the UK? What part?


i live in northumberland in a little fishing village. i have had narcolepsy most of my life and i was diagnosed with cataplexy before i even knew what it was so i was about 16.
im lucky so far apart from these 2 i dont have any other medical problems.
i love laughing i recently met a bloke who couldnt believe how happy a person i was.i never realized i gave that impression to people he surprised me when he said it cause ive spent half my life trying nt to laugh cause of the C!! i think i have managed so long by being honest with myself and people about it. i learn my limits and have common sense. i still have problems and accidents bt nothing to dwell on.
so u want me to pick on u? lol im too nice a person to do that.i pick on my best friend all the time tho for being short bt ive known her for 10 yrs now.




The positive attitude and encouragement is needed. But please also remember that people come here to vent, also. NN is a coping place that is found no where else other than other narcolepsy support sites. It is absolutely awesome to have these posts because they are greatly needed, but remember that reading other pwn's posts that are "negative" is what is needed also. Don't forget our brothers and sisters are posting because they 1) need to express themselves to cope, and 2) need feedback. That is actually an excellent place to reply with your words of encouragement!

this is very true. people do need to vent somewhere. i think i have proberbly even had a go myself somewhere on here. this is a good place to let off steam with people who can relate in some way. it is ok for people to feel negative at some point in their life. but as long as there is positive people as well then they should know that things can and do get better. i was ok with my N and C when i joined this group bt i have learnt so much from u lot i didnt think i could it has made me feel even better about it which for me is a really big thing because in the past i have had issues with the cataplexy and never speaking to anyone with it before was so frustrating!!

TRUST ME, MY FRIEND, I DESERVE IT. Fishing village huh? That is all I do these days. I love to fish but in freshwater and rivers only. The last time I fished in the ocean, I became so sea sick, that I jumped out of the boat while my friend was reeling in a shark. He said, "Are you nuts, man!!" I said, "No, I'm sick dude!!" Well, it's a pleasure meeting you. Mike

[Mr BluBerry]

being narcoleptic is cool for me. i get paid for it

[hathor]

TRUST ME, MY FRIEND, I DESERVE IT. Fishing village huh? That is all I do these days. I love to fish but in freshwater and rivers only. The last time I fished in the ocean, I became so sea sick, that I jumped out of the boat while my friend was reeling in a shark. He said, "Are you nuts, man!!" I said, "No, I'm sick dude!!" Well, it's a pleasure meeting you. Mike

lol that story cracked me up. dont people just normally hang their heads over the side??? nice meeting u too and everyone else here.
clare x

[malachi777]

lol that story cracked me up. dont people just normally hang their heads over the side??? nice meeting u too and everyone else here.
clare x

LOL.....I hung my head over until I could dry heave no longer. I was so desperate to get out of the boat and swim to shore that I forgot we were many miles from land. After being pulled back into the boat. He took me back to shore.

[hathor]

LOL.....I hung my head over until I could dry heave no longer. I was so desperate to get out of the boat and swim to shore that I forgot we were many miles from land. After being pulled back into the boat. He took me back to shore.

lol we have the RNLI for that. it a volunteer lifeboat.

[malachi777]

lol we have the RNLI for that. it a volunteer lifeboat.

That would have been great! Then I could have safely jumped into the lifeboat to get out of what I was starting believe was a death boat. I was sure my lungs were about to be heaved and exposed to the elements. lol