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Re: Two hours of sleep

Posted: Thu Apr 06, 2017 3:22 pm
by Polar Bear
stupid" "insanity" .... hmmmm.... a bit like the question
"What is the difference between 'bravery' and 'stupidity' and 'no choice' -

Ann - I would have no doubt that you would have the tenacity and determination to pursue a Ph.d successfully. One bonus being that they are generally not time limited. Those hours during a bad night could become so productive :)

Re: Two hours of sleep

Posted: Thu Apr 06, 2017 5:40 pm
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.

Re: Two hours of sleep

Posted: Thu Apr 06, 2017 11:30 pm
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.

Re: Two hours of sleep

Posted: Fri Apr 07, 2017 12:02 am
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!

Re: Two hours of sleep

Posted: Fri Apr 07, 2017 12:04 am
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.

Re: Two hours of sleep

Posted: Mon Apr 10, 2017 8:03 am
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.

Re: Two hours of sleep

Posted: Mon Apr 10, 2017 8:25 am
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.

Re: Two hours of sleep

Posted: Tue Apr 11, 2017 6:27 am
by badnights
It's hard to bear up when you're tortured so often. Hugs Deb.

Re: Two hours of sleep

Posted: Tue Apr 18, 2017 4:20 am
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!

Re: Two hours of sleep

Posted: Tue Apr 18, 2017 6:55 am
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.

Re: Two hours of sleep

Posted: Tue Apr 18, 2017 6:58 pm
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

Re: Two hours of sleep

Posted: Wed Apr 19, 2017 9:18 am
by leggo_my_legs
((badnights)) glad to have touched your heart

((Ann)) hugs back!

Re: Two hours of sleep

Posted: Thu Apr 20, 2017 9:07 pm
by debbluebird
Sleep has come and gone as usual. Feel pretty good today.

Re: Two hours of sleep

Posted: Thu Apr 20, 2017 10:21 pm
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!

Re: Two hours of sleep

Posted: Fri Apr 21, 2017 9:02 am
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?