Two hours of sleep

For everything and anything else not covered in the other RLS sections.
legsbestill
Posts: 561
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Two hours of sleep

Post by legsbestill »

Ever tried? Ever Failed? No matter. Try again. Fail again. Fail better.

Samuel Beckett

I can never decide if it is actually an uplifting quote.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Two hours of sleep

Post by debbluebird »

I will have a few good nights, and then feel better. Then when the good period comes back, I will think that it will last forever.
I'm already better. Slept some last night.
Thanks everyone for your thoughts.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Two hours of sleep

Post by ViewsAskew »

debbluebird wrote:I will have a few good nights, and then feel better. Then when the good period comes back, I will think that it will last forever.
I'm already better. Slept some last night.
Thanks everyone for your thoughts.


Good news!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Two hours of sleep

Post by ViewsAskew »

legsbestill wrote:Ever tried? Ever Failed? No matter. Try again. Fail again. Fail better.

Samuel Beckett

I can never decide if it is actually an uplifting quote.


Uplifting because it tells me that I have a choice about how I fail. Not that I won't, but that next time I can deal with it better, learn more from it, or use it in a positive way.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two hours of sleep

Post by badnights »

Deb, I hope you can hold on to the wonderful things, the things we need to keep us going.
I will have a few good nights, and then feel better. Then when the good period comes back, I will think that it will last forever. I'm already better. Slept some last night.
It's good that you think it will last forever; how else could you enjoy it? The problem is if you think the bad times will last forever when you're in the middle of them. It's usually possible for me to realize - at least intellectually, if I can't feel it in my gut - that bad times always end, whether I do anything to end them or just endure through.

Almost no one understands what this disease is like. I don't have many friends, probably because I'm picky that way. If you don't know my disease, you don't know me!

If someone implies they know what I'm going through, I'll either say "having restless legs is not even close to having this disease. Don't be fooled by the name, it affects all different aspects of our bodies and our lives" or
"Did you know that there's only one disease in the world that causes greater sleep loss than mine?" - they always ask what it is, then I say "It's called Fatal Familial Insomnia. It's fatal, because everybody who has it, dies. From being unable to sleep. It makes them dead." or I'll say
"Do you want to know what my disease is like? I can tell that you don't know, so if you're interested I'll tell you" - the implication being - don't talk as if you know about it, because you don;t.

Some people are actually interested in learning about it. Those are my friends. The others are just people I say hi to.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Two hours of sleep

Post by debbluebird »

Thanks for the information. I knew that people could only live so long without sleep, but didn't know about the disease. Thank goodness I don't have it, but I do believe that my leg jerks are the same as with that disease, muscle twitches and jerks called myoclonus. Mine are getting worse over time.
Last night was a minimal night thank goodness. Tonight, I'm just wide awake. It happens once in awhile.
At least I know I won't have this in heaven.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two hours of sleep

Post by badnights »

It's hard to bear up when you're tortured so often. Hugs Deb.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

leggo_my_legs
Posts: 349
Joined: Sun Oct 16, 2016 12:29 am

Re: Two hours of sleep

Post by leggo_my_legs »

Reading this thread is reminding me of the struggles of invisible disability. This thread is normalizing my life experience, for sometimes I don't feel I have accomplished much in my life. People with disabilities (I don't like that word much but not sure how else to say it) struggle every day to do things that others take for granted. Thank you for reminding me of that.

Sometimes it's hard to remember that every life has value, even if you're not one of these wildly successful people that the corporate machine says you could be if you just "worked harder."

If you dream of the PhD program, do it! Take your time and get educational accommodations to help you through. Or just start and quit if you don't like it! At least you can say you tried it rather than listening to that discouraging voice. I have that voice too.

And now, I will toss my lottery number into the drawing of all those with RLS and PMLS who are trying to sleep tonight! :) Hopefully I win tonight, and hopefully there's a huge drawing and all of you do too!

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two hours of sleep

Post by badnights »

Reading this thread is reminding me of the struggles of invisible disability. This thread is normalizing my life experience, for sometimes I don't feel I have accomplished much in my life. People with disabilities (I don't like that word much but not sure how else to say it) struggle every day to do things that others take for granted. Thank you for reminding me of that.
Sometimes it's hard to remember that every life has value, even if you're not one of these wildly successful people ...
I actually started crying. Thank you for your post.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Two hours of sleep

Post by ViewsAskew »

leggo_my_legs wrote:Reading this thread is reminding me of the struggles of invisible disability. This thread is normalizing my life experience, for sometimes I don't feel I have accomplished much in my life. People with disabilities (I don't like that word much but not sure how else to say it) struggle every day to do things that others take for granted. Thank you for reminding me of that.

Sometimes it's hard to remember that every life has value, even if you're not one of these wildly successful people that the corporate machine says you could be if you just "worked harder."

If you dream of the PhD program, do it! Take your time and get educational accommodations to help you through. Or just start and quit if you don't like it! At least you can say you tried it rather than listening to that discouraging voice. I have that voice too.

And now, I will toss my lottery number into the drawing of all those with RLS and PMLS who are trying to sleep tonight! :) Hopefully I win tonight, and hopefully there's a huge drawing and all of you do too!


Image
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

leggo_my_legs
Posts: 349
Joined: Sun Oct 16, 2016 12:29 am

Re: Two hours of sleep

Post by leggo_my_legs »

((badnights)) glad to have touched your heart

((Ann)) hugs back!

debbluebird
Posts: 2386
Joined: Mon May 21, 2012 3:27 pm

Re: Two hours of sleep

Post by debbluebird »

Sleep has come and gone as usual. Feel pretty good today.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Two hours of sleep

Post by ViewsAskew »

debbluebird wrote:Sleep has come and gone as usual. Feel pretty good today.


I find very little correlation between how much sleep I get and how I feel. Sometimes I feel horrible when I have slept and great when I have had very little - and vice versa. Such a strange and crazy disease this is.

Glad you feel good today!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
Moderator
Posts: 6259
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Two hours of sleep

Post by badnights »

Sometimes I feel horrible when I have slept and great when I have had very little - and vice versa.
Am I right or wrong... I think we never have enough sleep, we're always operating on a deficit. So it's easy to feel like crap after a "good sleep" - no matter how good, one night is not even close to enough to let us feel good. But kick enough glutamate and whatever else is needed into our brains and we do feel good, or we think we do -
whatever good means to us now that it's been so long since we've been truly rested that our perception of feeling good is distorted.

Or am I wrong? Am I perhaps actually sleeping well and I just feel like crap all the time because of my meds, or because I don't have the right attitude, or because the moon has a crack in it?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
Moderator
Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Two hours of sleep

Post by ViewsAskew »

badnights wrote:
Sometimes I feel horrible when I have slept and great when I have had very little - and vice versa.
Am I right or wrong... I think we never have enough sleep, we're always operating on a deficit. So it's easy to feel like crap after a "good sleep" - no matter how good, one night is not even close to enough to let us feel good. But kick enough glutamate and whatever else is needed into our brains and we do feel good, or we think we do -
whatever good means to us now that it's been so long since we've been truly rested that our perception of feeling good is distorted.

Or am I wrong? Am I perhaps actually sleeping well and I just feel like crap all the time because of my meds, or because I don't have the right attitude, or because the moon has a crack in it?


I have thought that, too. Maybe we never feel normal after we reach a certain point of sleep deprivation that cannot be corrected for long enough of normal sleep.

That moon might have a crack, though. I sometimes feel as if I know less now than I did when I knew nothing.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Post Reply