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T O P I C    R E V I E W
eldergirl Posted - 09/15/2013 : 01:00:49 AM
This is an older topic for posts about personal stuff which began with knitters who were night owls (duh!)

When my beloved older son died of cancer in the summer of 2009, we spent nearly 5 months in Atlanta taking care of him, then clearing his apartment after he died. The Night Owls thread was my lifeline then. Truly. I will never forget the gift of being able to grieve here, and have the kindness of my fellow knitters to support me and help me through: even though I didn't know anyone personally!

I am back, because since then I have been suffering from Circadian Rhythm Disorder, where my sleep/wake times are impossibly screwed up. The history of this disorder is like that of the Chronic Fatigue Syndrome, in that doctors do not receive the patient's info. as description of a "valid" problem. The last directive I received was 2 weeks ago: consistency: get up at the same time consistently. But I have a variety of the syndrome which does not pay attention to the 24 hour cycle: "Non-24 Circadian Rhythm Disorder.

I fall asleep later and later each "day", and wake up later and later, in a non 24-hour cycle.
I am unable to be reliable on daily outings or tasks, and I have felt ashamed of my "weakness" for years.

I just learned the name for the illness 2 weeks ago. Who knew?

Now I am a member of the Circadian Rhythm Disorder website.

I am boring those of you who are reading this, because I would love to know if any other knitters have this disorder, or have heard of it, and wonder about experience with treatments or whatever. There is no known "cure" for this disease.

Thanks, dear friends, for "listening"!

Best wishes,

Anna

Life is beautiful.
19   L A T E S T    R E P L I E S    (Newest First)
Luann Posted - 12/18/2013 : 11:18:00 AM
Shaggy!!!! So nice to hear from you! Big hugs back to you!

Knit and let knit!
http://www.luannocracy.blogspot.com
shaggy Posted - 12/17/2013 : 4:49:07 PM
Just wanted all the night owls to know I just read this thread, and I am thinking of you all.

xoxoxoxox hugs

shaggy

every dollar makes Betty smile





eldergirl Posted - 10/06/2013 : 9:31:26 PM
Anyone can be a Night Owl! It was an "unofficial" group years ago, that we posted to usually in the wee hours, but not always. We just stopped using the title after awhile.

Life is beautiful.
Rwats2 Posted - 10/06/2013 : 11:42:45 AM
Can someone with a slight case of insomnia join? For I do not know for how many years I have.not really gone to be at a decent hour. I can stay up as late as say 1or so in the am knitting and watching tv.

Thank you.
Shalee Posted - 09/29/2013 : 10:13:17 PM
Well gee, I guess I'm not so different! I seem to sleep in 3 hour increments with 2 to 10 hours in between. Of course I don't normally go to bed until 1 A.M. or later. It has gotten to the point that I put my phone on "do not disturb" during tired times during the day, so I can get some sleep. I was so excited when I discovered I had that feature! Even all but one of my doctors nurses don't call me right at 9:00 in the morning. The one that calls right at 9 thinks it is funny to wake me up! What she doesn't realize is I don't always remember what she had to say when she wakes me up!

I won't go on and on, but with my sleep problems and now finding out I'm not as healthy as I thought I was, I get frustrated. I'm not knitting as much as I want. I don't even like to leave the house anymore; it is too much effort. My retirement is not what I expected.

Sharon in NW PA
I always wanted my own library but I didn't realize it would be all knitting books!


sandyt Posted - 09/27/2013 : 06:49:08 AM
Hi Anna! I was an original member of the Night Owls, way back when.

The post above is wonderful! I'm so sorry that you were ashamed of this-and I'm happy that you have a diagnosis for the disorder.

I have no advice, I can only say that Night Owls appreciate what you are going through. I hope that research catches up and can provide something for you in the future. Meanwhile, take care and just do what we all do...you know...sigh.
robinstephanie Posted - 09/25/2013 : 09:01:31 AM
Ah, Luann, a very interesting article, thank you. All this kind of makes me wonder what the whole "first sleep/second sleep" lifestyle might be like. I especially like this:
quote:
Subjects grew to like experiencing nighttime in a new way. Once they broke their conception of what form sleep should come in, they looked forward to the time in the middle of the night as a chance for deep thinking of all kinds, whether in the form of self-reflection, getting a jump on the next day, or amorous activity.


Uninterrupted knitting time, anyone?


Robinsteph

Different is good. ~Matthew Hoover
Kade1301 Posted - 09/24/2013 : 12:37:03 AM
quote:
Originally posted by robinstephanie
...

Over the past 100 years or so, we've forgotten that these so-called "normal" sleeping hours are defined by our culture, not our biology. And so we lose the flexibility and experience to deal with a wide range of "sleeping styles". ...



Exactly! Therefore for me the solution is not to fight my waking or sleeping patterns, but to arrange my life so that it fits into them. I was lucky in that I could talk my last boss into letting me work 10 a. m. to 7 p. m. instead of 9 to 6.

One of my bosses before was convinced that we would be more productive in the afternoon if we could have a short nap after lunch (that was about 20 years before the N.Y. times article was written). He didn't get around to setting up cots in the warehouse, though... (wonder whether we could have talked him into it...)

Lots of countries shut down for a few hours after lunch (Spain, Italy, parts of France) during the heat of the day and life continues far into the night, when tempeartures are bearable.

So, Anna, don't feel ashamed of your "weakness" but live your life how you want to live it. And if you want to live a 25-hour-rhythm, do so.

Bye, Klara


http://www.lahottee.info
Luann Posted - 09/23/2013 : 12:12:44 PM
HI Anna - I miss our Night Owls group too! I know a lot of us are on Facebook now but it's not the same. These forums and you ladies especially helped me so much during some rough times.

Left to my own devices, I think I'd go to sleep about 1:30 am and wake up at 9 or 10 am. I think my husband might have the Circadian Rhythm Disorder however - it seems like about once every 6 days or so he'll stay up all night, go to work, fall asleep early that evening, and then get up very early the next morning. It's been a big adjustment for us both now that we don't work for ourselves anymore - he has to be in the office "core hours" at his company now. He prefers mornings, but sometimes he's seeing them from the back side not the front.

Robinsteph, I first heard of the theory you mention in this article from last year.
http://www.nytimes.com/2012/09/23/opinion/sunday/rethinking-sleep.html?pagewanted=all&_r=0
It definitely resonated with me.

Luann

Knit and let knit!
http://www.luannocracy.blogspot.com
robinstephanie Posted - 09/22/2013 : 11:52:55 AM
[[Anna--I've been editing this post off and on for days. As you can see, this is not boring to me! I hope your contact with the folks on the website is helping you, and you're starting to understand your behavior in a new way, and not as a weakness!]]

I can see why this sleep cycle would tend interfere with your ability to function, or to have "human time". I imagine it's not something that can be predicted in a straightforward way, so you never know where you'll be in the cycle and whether or not you'll be able to get certain things done when they need to get done, or meet up with people at predefined times. That sounds very frustrating.

Our modern culture, too, can make it harder for anyone who responds best to sleep other than that defined, culturally, as "normal"--which is 8 hours straight through, from approximately 10pm-6am or thereabouts. What about those of us who are, genuinely, night owls, who sleep best between the hours of 5am and 8am? I have to sacrifice my best sleep every day I need to get up for work.

And there are many, many cross-cultural references to a sleep pattern where people go to bed at about 8 or 9pm, sleep for a few hours, then get up and do a bunch of stuff in the middle of the night (cooking, cleaning, weaving, knitting, singing and storytelling in groups, &etc.) Then they go back to sleep for several more hours. There are Victorian references that call this "first sleep" and "second sleep" and it was understood to be commonplace. American Indians did it, rainforest Indians in South America do it--it's a completely different cultural understanding of sleep! Perhaps even biologically based. Imagine capitalism trying to cope with that! But no, we need to have regular hours, all in a row, at the same time, so we can all show up to work at the same, predefined time.

Over the past 100 years or so, we've forgotten that these so-called "normal" sleeping hours are defined by our culture, not our biology. And so we lose the flexibility and experience to deal with a wide range of "sleeping styles". Your sleep cycle doesn't fit what we understand as normal, and it becomes traumatic and frustrating for you.

I suppose my point in all this is that people have got to be stepping in and out of the type of sleep you're experiencing for zillions of years. People are people, and stress and grief turn us inside out. I think it's a normal thing that normal people do, it's just that a lot of us are under informed. And then doctors! OK--I know they're great in a lot of ways, in fact they've saved my life, surgically—but god forbid you have something that they don't have a neat category for.

OK, I'm stepping off the soapbox.

Robinsteph

Different is good. ~Matthew Hoover
Schaeferyarnlover Posted - 09/22/2013 : 06:31:28 AM
I really feel for anyone suffering with this. I have fibromyalgia and rheumatoid arthritis. The fibro was undiagnosed for more than ten years; the doc said I had not had a good nights sleep for ten years! I take a small amt of an antidepressant which helped a lot. I need a good rest to get through the next day.
I remember the agony of sleep deprivation when I was a new mom and night after night getting up, and feeling like a zombie the next day.
Go ahead and sleep all day! There is no errand more important than that REM sleep.
Kade1301 Posted - 09/19/2013 : 04:35:55 AM
Sorry, I don't quite see how living a 25 or 26 hour rhythm translates to being unable to function. I mean, couldn't you simply go to bed one (or two, or however your body wants) hours later every day and get up correspondingly? That would mean that a) your waking and sleeping times are perfectly predictable and b) that regularly (not always, though) you would be awake (as in fully awake and well rested) during daylight hours. Which would be the days to do errands and chores that need daylight. For everything else I'd install daylight-quality lamps in my home - fortunately knitting can be perfectly well done at night ;)

I've wondered whether our planet used to spin slower sometime in the past, i. e. took 25 hours for one revolution...

Bye, Klara

http://www.lahottee.info
eldergirl Posted - 09/18/2013 : 11:43:10 PM
Debra, I take my sleep when I can get it, and sleep during the day, sometimes all day. I no longer work, so am not tied to a timetable, but losing daylight is losing human time, and time to do chores and errands. But I do the best I can, and I get enough sleep, because I am so conscious of being healthy, no matter what.

Anna

Life is beautiful.
Schaeferyarnlover Posted - 09/18/2013 : 06:37:41 AM
I had never heard of this syndrome. I'm guessing it applies to lots of folks who can!'t sleep at night. Question: what happens when you can sleep when you would like? Are you then able to sleep enough to feel rested?

Debra
eldergirl Posted - 09/17/2013 : 4:21:10 PM
I think some of us may need to know how hard I have tried to beat this problem behaviorally:
I have tried getting up at a regular hour in the morning, and have been successful for days , once over a week at a time. But I eventually am exhausted, and cannot cope with life at all.'

This on and off has gone on for over 5 years. It is an enormous relief to find that others struggle with this disorder as well, and that it has a name.

It isn't something I want to have.

Thanks for your comments! You all are wonderful!

Anna

Life is beautiful.
flicka Posted - 09/16/2013 : 5:07:06 PM
Dear Anna, you are not boring me at all! I recognize the symptoms. Someone near and dear to me, who died many years ago, most likely had this disorder. He managed it by becoming a solitary, self-employed, night-time worker. We had no idea that this was an actual syndrome. How blameful we were, and how sad that makes me now.

Thank you for educating us. I wish I had known this long ago.

flicka
Kade1301 Posted - 09/16/2013 : 04:50:32 AM
quote:
Originally posted by eldergirl


...
I fall asleep later and later each "day", and wake up later and later, in a non 24-hour cycle.
...



Okay, I don't know anything about circadian rhytm disorder per se. But when I have a choice I too tend to go to sleep later and get up later every day. I've often wondered what would happen if I spent a few weeks in one of these research facilities where you are completely cut off from the outside world (and daylight), without clocks. And there's something at the back of my mind about that non-24-hour-rhythm actually being normal - it's just that for most people their internal clock gets reset at sunrise, or the alarm clock's ringing.

Now I'm lucky in that I can get up when I have to - even if I have to put the radio on maximum volume to wake me up... Could that not work for you?

Bye, Klara

http://www.lahottee.info
Lynne604 Posted - 09/15/2013 : 2:15:30 PM
I know what you mean about not being reliable for outings, etc. Due to chronic insomnia, I am the same way. I never know if I will be able to put in an appearance and I don't want to let anyone down who is depending on me. Not long ago, after a sleepless night I had to cancel lunch with a friend. Ironically, I had just gotten to sleep when she called and woke me to see if I needed anything!
mertle Posted - 09/15/2013 : 03:39:06 AM
Hi, Anna,

I was one of the Night Owls. Wow, how I miss that thread! We sort of petered out about the time my sister died three years ago. You, Sandy, Mocha, Luann, Lella, KL, Shaggy, Mary ... *sigh* ... got me through a lot!

I'm off to go read more about this disorder. I've never heard of it and am intrigued. Hope you find some encouragement and relief!



Marilyn
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