Non-Profit Supporting Fractured Sleep Clocks


Chronorhythm Sleep Disorders are SERIOUSLY understudied – overlooked
PLEASE help spread the word about CSDN — reblog, link, talk about it on chatlists ~ thanks!

Stepping into the Void:
The Circadian Sleep Disorders Network

by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC
Another article in the Sleep Series

Broken ClockBroken Sleep Clocks

As many as three quarters — 75% — of those of us here in “Alphabet City” have chronic problems with sleep and sleep timing.

Most of us have trouble falling asleep at night unless we are, literally, exhausted. For some of us, not even then. Almost all of us struggle to come to alertness when we awaken.

Are you aware that, until now, there has been
no concerted effort to understand WHY?

Chronorhythm disorders – the disorders of sleep timing – have long been the unloved step-child of sleep medicine.

A relatively new Non-Profit organization, the
Circadian Sleep Disorders Network
has been formed to change that sad reality.

Charter Members joined before before March 31, 2012, and you can join NOW
if you have even as much as $5.00 to spare.

  • They need NUMBERS to help them demonstrate the size of the problem.
  • They need financial support to be able to lobby for awareness, research
    and change.

I joined online, using their link to PayPal, sending the regular membership fee of thirty dollars, clicking a button to add an additional donation at the same time.

You can use that link to pay using any method you prefer – you don’t have to have a PayPal account.  They’ll email you a receipt, and take you to a page that will give you the password that opens the door to the resources that are a privilege of membership.

  • But the MAIN reason to join is not the goodies on the membership part of the site.
  • They need OUR support to be able to support their efforts on our behalf.
  • Do it the moment you get to the link at the bottom of this article — before you “ADD-out.”

I urge ANYONE who has trouble falling asleep at night, frequently sleeps through alarms, repeatedly “hits the snooze,” and/or finds it difficult to come to alertness in the morning to explore CSDN’s amazingly informative website; sign up for membership to join them in their efforts.

Help to support their Mission:

“Circadian Sleep Disorders Network is a non-profit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.

We aim to increase awareness within the medical community and among the general public, to provide emotional support and practical ideas for people living with these disorders, to encourage research into circadian rhythms, and to advocate for accommodations in education and employment for people with circadian rhythm sleep disorders.

Remember: links on this site are dark grey to reduce distraction potential
while you’re reading. They turn red on mouseover
Hover before clicking for more info

It’s about time WE were invited to the table!

In an earlier article explaining the High Interest Charges for Sleep Debt, I began with the following:

BigYawn“At least 40 million Americans suffer from chronic, long-term sleep disorders each year, and an additional 20 million experience occasional sleeping problems. These disorders and the resulting sleep deprivation interfere with work, driving, and social activities.

They account for an estimated $16 BILLION in medical costs each year, while the indirect costs due to lost productivity and other factors are probably much greater.”

My source for that information goes on to say that “the most common sleep disorders include insomnia, sleep apnea, restless legs syndrome, and narcolepsy,” which is an indication of how little research has been done on chronorhythm disorders. 

In my 20 year hunt for research or information about the problem, I have encountered MANY individuals struggling with sleep timing – and I am finding more and more every day.

  • Yet we have not really been factored into the sleep disorder statistics. 
  • Except for the sleep specialists, MOST doctors (and even fewer Coaches) are aware of the existence of chronorhythm disorders
  • The few who are aware of them are not aware enough to recognize chronorhythm destabilization in what their patients/clients say about their sleep habits – if they even ASK about sleep habits!
  • Even highly sleep-literate doctors and coaches know little about what to DO to restabilize circadian rhythms —   because NOBODY really does.

‘Sup with THAT?!

blackANDwhiteZs

Check it out!

Among their MANY resources, you’ll find a two-sided brochure with a clear explanation of Circadian Struggles that they encourage everyone to download, print and distribute.

Take it to your doctors, request that they read it,
then ask them to put it in your file.

Because the quality of our waking hours is a product of the quality of our sleep!

 

Upcoming Articles will go over other sleep basics — like the cycling of the sleep stages, which will underscore the importance of allowing yourself enough time to cycle through them all (which will help to explain WHY some amounts of sleep make it harder to wake up at a certain time, and how to tweak to make it easier). 

We’ll also take a closer look at what happens when chronorhythms destabilize and some of the warning signs that you are dancing to close to the destabilization edge — SO STAY TUNED.

————————————————————————————————————————————
As always,
if you want notification of new articles – in the Sleep Series, or any new posts on this blog – give your name and email to the nice form on the top of the skinny column to the right. (You only have to do this once, so if you’ve already asked for notification about a prior series, you’re covered for this one too) STRICT No Spam Policy

HOWEVER you do it, stay tuned — there’s A LOT to know, and a lot more to come. Get it here, while its still free for the taking!

If you’d like some one-on-one (or group) coaching help with anything that came up while you were reading this article (either for your own life, that of a loved one, or as coaching skills development), click the E-me link <—here (or on the menubar at the top of every page) and I’ll get back to you ASAP (accent on the “P”ossible!)

Articles in the Sleep Series
(links turn red & “click” only once the article has been published)

About Comorbidities

Chronorhythm Info Sites & other Related Articles

BY THE WAY: I revisit all my content periodically to update links — when you link back, like, follow or comment, you STAY on the page. When you do not, you run a high risk of getting replaced by a site with a more generous come-from.

About Madelyn Griffith-Haynie, MCC, SCAC
Award-winning ADD Coach Training Field founder; ADD Coaching field co-founder; [life] Coaching pioneer -- Neurodiversity Advocate, Coach, Mentor & Poster Girl -- Multi-Certified -- 25 years working with EFD [Executive Functioning disorders] and struggles in hundreds of people from all walks of life. I developed and delivered the world's first ADD-specific coach training curriculum: multi-year, brain-based, and ICF Certification tracked. In addition to my expertise in ADD/EF Systems Development Coaching, I am known for training and mentoring globally well-informed ADD Coach LEADERS with the vision to innovate, many of the most visible, knowledgeable and successful ADD Coaches in the field today (several of whom now deliver highly visible ADD coach trainings themselves). For almost a decade, I personally sponsored and facilitated seven monthly, virtual and global, no-charge support and information groups The ADD Hours™ - including The ADD Expert Speakers Series, hosting well-known ADD Professionals who were generous with their information and expertise, joining me in my belief that "It takes a village to educate a world." I am committed to being a thorn in the side of ADD-ignorance in service of changing the way neurodiversity is thought about and treated - seeing "a world that works for everyone" in my lifetime. Get in touch when you're ready to have a life that works BECAUSE of who you are, building on strengths to step off that frustrating treadmill "when 'wanting to' just doesn't get it DONE!"

12 Responses to Non-Profit Supporting Fractured Sleep Clocks

  1. Pingback: November 2017 Mental Health Awareness | ADD . . . and-so-much-more

  2. Pingback: Mental Health Awareness in November | ADD . . . and-so-much-more

  3. Brandi says:

    Whoa! This blog looks exactly like my old one!
    It’s on a entirely different subject but it has pretty much the same page layout and
    design. Excellent choice of colors!

    url: tawnyacuppaxapsxe.beeplog.com

    Like

    • Thanks. Brandi, for taking the time to comment – interesting that my customization mirrored yours. Thanks for ringing in!
      xx.
      mgh

      Like

  4. Hi. Late to the party, but I still want to thank you for this post!! (Late to a lot of things, come to think of it.)

    Those of us who do not sleep on the “normal” schedule are blamed all our lives for being lazy, inconsiderate and worse. All too many of us internalize this: that we ARE irresponsible, we DO lack the self-discipline that others possess. (Could that cause the depression that at least 50% of us suffer from, at least in periods?) We learn how unfair we (and others) are to ourselves when we’re finally made aware of the Circadian Rhythm Disorders. They are real! I walked on air the day I got the diagnosis.

    (It’s just criminal that so few doctors have heard of CRDs!)

    Though too little, there is SOME research going on. Some of it is very validating, like the study I want to mention now (have you heard of it?). I haven’t (yet) found the original study, but WaPo has an interesting article from May 2013: http://www.washingtonpost.com/national/health-science/disrupted-brain-clock-is-linked-to-depression-in-new-study/2013/05/20/90802c24-be65-11e2-9b09-1638acc3942e_story.html

    Here we learn that there are clear, observable differences between the brains of people with broken body clocks and healthy people. (Never mind that they studied depressed people. It’s an open question whether the depression is caused by the broken brain clock, or vice versa. I believe the former.)

    Liked by 1 person

    • No such thing as late to THIS party — we LIVE late — Seriously, it’s an Evergreen blog (I even update 2 year old content, if it needs it) – and keep weaving the web of links that interconnect the content here with every post.

      So comments are welcome ANY time, ANY where — especially yours.

      I sense that our sleep struggles have caused similar frustrations with life (and those who shame and blame until we’re really no longer certain if just perhaps they are right and we are wrong — we “just” need to straighten up, fly right – and put ourselves to bed at a decent hour!!!!!)

      It will NEVER cease to boggle my mind that the very first thing out of the mouths of ANYONE who’s not a fellow sufferer – after they ask about my awakening time (or rag my @$$ about something I didn’t have sufficient daylight overlap hours to accomplish), is always WELL, WHAT TIME DID YOU GO TO BED?

      Of COURSE – I should have thought of that – THANK YOU
      It’s MY fault I sleep the wrong 8 hours because I go to BED at the wrong time.

      So, let me make sure I get this right — ALL I have to do now is go to bed and the magic fairies will make it all better – AFTER they call Mr. Sandman?
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
      Seriously, let’s think this through logically.

      1- My life tanks when I don’t have daylight overlap hours – but
      2- you want me to lie in bed staring through the dark starting at (what time again is the vanilla definition of a “decent” hour?) —
      3- RATHER than using the hours I AM awake to do whatever I CAN do in the middle of the night to keep things moving forward somehow?

      4- and that makes my life better HOW?!!
      ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

      WHAT, ARE YOU BRAIN DEAD!??

      Ahhhhh – that feels better.
      Too bad the people who need to hear this will never read it, and it always seems to activate my startle when they rag, so none of this is accessible at the time I need to lob it back at them.

      Now that I’ve gotten it out of my system, I’ll go get some coffee, come back and respond to the REST of your comment.
      xx,
      mgh

      Liked by 1 person

      • I did find the full text of that study, “Circadian patterns of gene expression in the human
        brain and disruption in major depressive disorder”:

        http://www.pnas.org/content/early/2013/05/08/1305814110.full.pdf+html

        and what they call the “supplemental” (PDF – 14 pages):

        http://www.pnas.org/content/suppl/2013/05/09/1305814110.DCSupplemental/pnas.201305814SI.pdf

        Think I might write to the author.

        Liked by 1 person

        • VERY cool! Thanks. I have been losing so many responses to comments that I am forced to do the “backstage/frontstage” dance — so when I’m online at the same time that someone comments (like now), I’m never sure WHICH version of my response you tuned in to.

          Better than not seeing ANY response, I guess, but not by much. ANYway, popping “backstage” to finish this comment NOW – brb

          Like

        • Just downloaded – will have to print to read (my brain can’t grok that degree of text density onscreen — without the ability to copy/paste/reformat) — so must have paper and ability to hightlite for focus.

          I’m going in with following attitude, already – eager to see what I come out with!

          Bi-polar aside, I believe that most depression is what I call “situational” – meaning that it is not the “original sin,” if you will, but caused by another situation (or dx state, etc.)., then spirals into a darker place as neurology tilts further off-kilter.

          That’s what I see, what I experience personally, and what makes sense to me in light of all the interventions, techniques, etc. that shrinks use in their attempts to “fix” (i’d say “heal” but that’s not the right frame either).

          When your life is not within your own control – EVEN to the level of when you sleep and when you are awake – and no one – not even the friggin’ AMA or APA — EVER understands or believes that you are not at cause (OR that you really wish you were because you could then cause it to be another, better way) . . .

          it would be psychologically maladaptive NOT to be depressed about it!

          Thanks for staying on the hunt. I’m looking forward to reading it.
          xx,
          mgh

          Like

  5. Darren says:

    Thank you for helping get the word out on these overlooked conditions. Even people who have heard of them rarely understand how disabling they can be,

    Liked by 2 people

    • You are quite welcome. Thank you for hopping over to read about it – and for taking the time to leave a comment.

      Sadly, even the *doctors* who treat sleep disorders know little about chronorhythm disorders.

      Nor do *most* of the ADD Coaches & Pros – even though those who are aware that 3 out of 4 of their clients and patients have sleep struggles of one type or another (and my experience is that the majority of the 75% have dysregulated chronorhythms – which means they are attempting to function with chronic sleep debt) VERY tough to live with!!

      Maybe we can make a difference there, huh?
      xx,
      mgh

      Liked by 1 person

  6. Dear Madelyn,

    I’ll bet you are wondering why you aren’t getting more notices that people have reblogged — or comments from fellow strugglers, given what YOU know about how common chrono-destabilitzation IS in the ADD (and TBI) — not to mention how LITTLE is known about circadian disorders in the sighted SIMPLY because it has never been studied.

    ME TOO!

    My most generous come-from is that my readership struggles with activation and follow-thru — but that could REALLY change for the better if we got a handle on this sleep thing.

    ANYBODY OUT THERE?

    xx,
    mgh

    Liked by 1 person

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