xlviii. Guest blogger: Breann (again!)

24 January 2010 at 21:48 | Posted in Circadian rhythm | 4 Comments
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  The  body  clock

 

A new list member wrote that his wife doubts the validity of Delayed Sleep Phase Syndrome, believes that his diagnosing doctor is a quack and believes that forcing oneself up early – often enough – will solve the problem.   

Breann, with her knowledge of biology, responded:

Hi __, nice to meet you :)

It might help if your wife had a basic understanding of genetics. I’m not trying to be flip, many people don’t; they’re lucky if they get some Mendel in high school, and unfortunately, his “one gene, one trait” discovery is not true for everything. (The last time I checked, there were at least ten genes thought to be involved in the sleep-wake cycle. Whew!)

In my experience, it has simply never occurred to most people that they wake up or go to sleep for any reason other than being tired or not being tired; i.e. they believe it is mostly a conscious choice. They are unaware that their body has many complex and delicate systems keeping track of the time of day, how long they’ve been awake, how much or little food they’ve consumed, and so forth. Sometimes just teaching people that these seemingly simply urges aren’t TRULY conscious choices for anybody is a great help in their understanding that some or all of these systems can “go haywire” due to using a different set of instructions (different forms of the genes that regulate the processes).

Something that really worked with my friends and family was for me to simply sit them down and ask them flat-out: “You have known me my whole life. Do I seem like the kind of person who is going to malinger for decades just to get out of doing things that you KNOW I enjoy doing? Think about this logically. Am I that kind of person? Do you think I’m faking when I’m upset about getting fired, or missing an important appointment? Either your judgement of me over the last 20 years is totally wrong, or I am insane and need a lot more help than a sleep doctor.”

That flipped a light switch for them, I think. It was still hard for them to accept, and still is in some cases, but it at least got them to consider the fact that if there isn’t something wrong with me physically, than that leaves me as someone who has deliberately, yet unconsciously, set out to ruin my own life. That makes no sense, if they take a minute to think about it, and not just have a knee-jerk reaction.

Hope this helps!

–Breann

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Next:  xlix. 2009:  sleep logs

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xlvi. Guest Blogger: Breann Hays

11 October 2009 at 21:15 | Posted in Circadian rhythm | 3 Comments
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This post was written in response to one whose author also lives on a very strict schedule and thereby feels that he has “defeated” his circadian rhythm disorder.  Breann feels a bit differently about it.  Thanks, Breann, for letting me use this!

 

I wouldn’t say that I’ve beaten DSPS.  I know that as soon as I stop doing everything right all the time, things will go back to the way they were.  I’ve been on the early morning schedule for about four months now, and my friends and family are really happy for me because they’ve never seen me do it for this long before.  (Sad but true :p)
 
But they also seemed to think that I would somehow have cured myself doing it  …  conveniently around the time they are getting sick of the unyielding restrictions on my time. 
 
One recently asked how much longer I would have to keep it up.  I said I was looking for new chromosomes, but they didn’t seem to have any at the store  :(  Then I felt bad for being mean, but it made me mad that she seemed to think that just because I was doing things differently it was going to really change anything.
 
Like I haven’t tried doing things differently a million times…  I have to keep reminding people that I have known how to operate an alarm clock for a long time, that’s not the part I had to learn… and none of this changes anything REALLY.
 
DSPS is a condition, not a habit.
 
Then she got kind of depressed and said it seems like a lot of work for nothing, then I got kind of depressed because it is…  But, oh well, at least I can say that I have a much better chance of at least graduating school.
 
I haven’t beaten anything…  I am just able to cope a lot better now.  And it took 3 years to get it down, too!

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Next post:  xlvii.  Distribution of early and late types

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xxxix. Guest Blogger: “J”

6 December 2007 at 16:42 | Posted in Circadian rhythm | 1 Comment
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Every now and then, someone on the mail list for DSPS and Non-24 just says it so well, often in a rant. I fell for this one by J., who has Non-24-hour sleep-wake syndrome. By permission:

 It’s so funny to me how many things I keep on finding out might be related to my Circadian Rhythm Sleep Disorder that I always thought were just “quirks” of mine. First of all the odd sleeping, of course, but also the fact that I am always cold when no one else is… I always thought that I just had “temperature regulation” problems, for no specific reason. And it wasn’t a big deal, but EVERYONE always commented on it. Once in my very FIRST meeting with a new psychiatrist (bounced from neurology, of course) he mentioned it and then perhaps took it as a sign of my psychosis. Right, bro, right. How about I HAVE A CIRCADIAN RHYTHM DISORDER. Gahhhh.I have also been accused of wearing long sleeves in the summer just to hide track marks (yep, I’m a lazy, psychotic heroin addict now).

 I am so sick of people viewing me as crazy and lazy, which, seriously, has been the case since this whole n24 thing hit when I was a teenager.

 But now at least I KNOW and can EXPLAIN how maybe I’m not lazy after all. And, no, not a junkie either! In fact the ones feeding me the drugs… who was that?!  DOCTORS.

 My sleep will never be normal. Trying to force it with daily drugs, morning and night, was wrong. Maybe my neurology in general will never be normal. My perception may never be normal.

 I have finally started to accept it because that is the right thing to do. The doctors need to get on board with this if they want to “do no harm”.

 And thanks for reading this far, if anyone did.

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Next:  xl. The post-lunch dip
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xxxiv. Guest Blogger: Alan West

26 June 2007 at 17:58 | Posted in Circadian rhythm | Leave a comment
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On our ‘niteowl’ list we give support and compare experiences. That list is a life-saver.

Now and then member Alan West, casting pearls for swine, finds and uses his most talentful pen. As here (with permission) on some results of sleep deprivation:

If the early-start enthusiast managers could somehow see the condition of the insides of our heads, I wonder what would happen? There might be some rather frenzied back-pedalling, along with long and tense conferences with their respective corporate insurance providers. Of course, there might not. 

 But how do we convey an accurate impression of our mental processes after early starting? After several years of early starting? Consider a more than usually drug-soaked short story. Various things happen in a headachy blur. Extraneous characters float in and out, unexplained. Strange things hide in the corners of the vision, wriggling and twitching and occasionally offering irrelevant comments in cartoonish voices. The co-workers have become a strange colour, and several do not appear to be touching the ground. Their faces have changed, and now they resemble famous people, long-dead physicists or gargoyles. The central character has to fight down the urge to slide small pieces of paper into the great creases in the faces of these gargoyles. 

The story continues. By now the readers understand, with mounting unease, that our central character, combining the worst of the mental states of Hunter S Thompson, Thomas de Quincy, and several other notorious drug-heads or drunks, has driven to work, managed to negotiate the stairs, found their desk, and is about to work on a huge and vastly important project that will affect the happiness of the entire human race. Can they find their pen? Can they remember any single fact about the project on which they are working? Can they remember their name, or where they live? Why are the pieces of paper on their desk moving about by themselves? Is there a goat hiding near the photocopier, leering?

The story concludes with the responsibility and sobriety of the central character being reinforced. The reader now knows that our hero is clean-living, and of sensible habits. But the weird stuff continues as the hero continues to look for their pen….

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Next:  xxxv. Can one figure out one’s own rhythms?

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xxix. Guest Blogger, not a morning person

15 October 2006 at 20:14 | Posted in Circadian rhythm | 5 Comments
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With the author’s permission, here’s a particularly insightful post to a DSPS support group. Thanks, V., for letting me use this!
_ _ _ _
 
 
It’s interesting to me when someone comes on and talks about a “cure” to see the reaction. I think there’s way more to this than just biology. I switched to an early wake time to take a class I needed to take to finish my degree. I noticed the same thing that some of you have mentioned. I got a lot of sleep at the “socially acceptable” times but waking up early everyday left me feeling weird. Like something wasn’t quite right. By the end of the academic term I was sick, fatigued and run down.
 
There was another thing I noticed, though, that was completely separate from the physical symptoms I was having. I felt like I moved to another city or something. Culturally, everything shifted slightly. I woke up and walked to the bus, the streets were filled with busy people, the world seemed way more crowded and the pace was so different from what I was used to. People’s attitudes were different. They were aggressive, everyone had to get to where they were going and you better not get in their way.
 
It was weird seing everything illuminated from the opposite side. I wasn’t used to seeing how things looked in the morning sun.
 
All the people I was used to seeing in my neighbourhood were gone as I was now going shopping, getting a coffee, doing my laundry at different times with all these different people.
 
I had trouble getting together with my friends because our schedules clashed and getting stuff done was hard because I didn’t have my uninterrupted night hours to be alone and work.
 
Even watching TV was annoying, all my favourite shows don’t come on till after 11pm (although that was easily solved by taping them but I couldn’t watch them with my friends).
 
After the course was over, aside from feeling like crap physically I think I was kind of homesick. I wanted to get some sleep, when my body wanted it rather than when it was “socially acceptable”, and then get back to my life. I wondered if looking for a “cure” was what I needed. I’m a night owl, always have been. I was the only 10 year old in my school who knew who Johnny Carson and John Belushi were. I grew up star gazing out my bedroom window because I couldn’t get to sleep until 4am and wasn’t allowed out of bed or to turn on the lights. I didn’t care about Saturday morning cartoons or getting up early to open my presents at Christmas, then or now.
 
It made me realize that I’m part of a culture of night people, people who have gone against some of the traditional norms when it comes to being an “early bird” and I really felt out of place in my new morning world.
 
I don’t think I’m up for being a guinea pig for another “cure”. So far all the drug, light, cycle therapies, special teas, white noise machines, relaxation tapes, etc. seem to focus on one aspect of the problem and ignore the rest; biological, social, psychological. And when one more thing doesn’t work I feel like even more of a defect. I’m tired of devoting so much energy to fitting in. Maybe it would be better spent trying to set up a life that works for me.

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Next:  xxx. Light Therapy, Practice Parameters, 1999

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