When your Sleep Clock is Broken


N-24 Awareness Day –

November 24

by Madelyn Griffith-Haynie, CTP, CMC, ACT, MCC, SCAC

Because I was not able to make it home in time to make sure this article posted automatically before November 24, 2014, primarily due to the ramifications of my own sleep disorder, it didn’t (groan!)

No matter, really, because the information remains relevant, if not exactly “timely,” posting one day following the official N-24 Awareness Day.

ABOUT Chronorhythm Disorders

As I said in the 2013 article about N-24 Awareness Day, chronorhythm disorders – the various disorders of sleep timing – have long been the unloved step-child of sleep medicine.

ALL OVER THE WEB, and in the sleep disorder literature itself, you will read that “the most common sleep disorders include insomnia, sleep apnea, restless legs syndrome, and narcolepsy.

That information is only partially correct.

Shamefully ignored and under-reported.

angry_alarm-clockThe fact that the short-list is so widely repeated by supposedly expert sleep sites and in books written by supposed experts in their fields, only serves to underscore how little research has been done on chronorhythm disorders – disruptions of the body’s sleep clock.

It lets us know how little professional awareness there is of how many people suffer from one of the chronorhythm disorders (also known as Circadian Rhythm Sleep Disorders).

Sadly, it also indicates that the information base of MOST doctors and scientists is inadequate and woefully out-of-date where sleep-disorders are concerned – even among too many of those who claim to specialize in sleep disorders.

Getting BETTER, but far too s-l-o-w-l-y

As I told you in a previous N-24 article, even if they don’t understand what’s behind what they’re hearing from their patients, most doctors now have at least heard of diagnostic insomnia, sleep apnea, and restless leg syndrome (along with most of the other non-chronorhthm sleep disorders).

The time it takes to receive an accurate diagnosis has decreased slightly now that doctors no longer throw ALL so-called insomnia into the “lousy sleep hygiene” bucket.

The general public, too, has become more aware of the importance of sleep to life success – and that some people have sleep disorders that makes getting a good night’s sleep difficult at best, no matter what they do or how hard they try to overcome them.

Workplaces are finally beginning to get a clue about the importance of sleep to performance, and the ramifications of sleep disorders.

Many schools can be convinced to provide at least some accommodations for the more familiar sleep disorders.

That is still not the case for chronorhythm sleep disorders, however.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
“Too many people don’t care what happens

so long as it doesn’t happen to them.”
~ William Howard Taft
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Were you aware that up to 75% of the ADD/EFD population struggles with sleep in a manner that strongly suggests some form of circadian rhythm disruption?

And still, unfortunately, FAR too few therapists and coaches who work with our population have any awareness of chronorhythm disorders or their significant contribution to the struggles of ADD/EFDers.

Even worse, far too many doctors and psychologists still misdiagnose sleep timing disorders as narcolepsy or insomnia, simply because those are diagnoses of which they are aware.

That has to change.

And YOU can help by learning about it
so that you can share the information with your
doctors, therapists, coaches, colleagues and loved ones.

What ARE Chronorhythm Disorders?

Chronorhythms, or circadian rhythms, are controlled by the SCN (the suprachiasmatic nucleus or nuclei), the so-called biological clock within the brain of every human being.

The SCN affects or controls the regular, “interdependent” daily highs and lows over a number of domains (like body temperature, hormone secretion, appetite, alertness) — as well as the body’s need to fall asleep at a certain time and sleep for a certain length of time.

Chronorhythm disorders (or Circadian rhythm sleep disorders) are the terms used to describe a variety of presentations of non-standard sleep patterns, in addition to Non-24-hour Sleep-Wake Syndrome. Some are intrinsic [“native”] disorders, and others are brought on my external factors (similar to the external cause of JetLag, which also scrambles the sleep clock).

The problem is, because their “sleep clocks” are set differently from “sleep-normal” individuals, that sufferers frequently find themselves unable to sleep and wake at the times required for the “normal” activities of work, school, and social interaction.

Let’s take a quick look at a few chronorhythm disorders besides N-24 before we move on.  Perhaps your sleep struggles might be similar to one of the following:

  • ISWD – Irregular Sleep Wake Disorder is perhaps the most dysregulated of the circadian rhythm disruptions.  It is characterized by irregular, unpredictable sleep/wake periods, with at least three sleep periods per day (misdiagnosed most frequently as narcolepsy).

Z-DroolingSmileyIrregular Sleep Wake Disorder is seen most commonly in the presence of dementias, developmental disorders (autism, for example), TBI (traumatic brain injury), and brain tumors.

As you might imagine, sufferers report family problems, work problems, and severely limited social interaction, which means they have depressingly fewer friendships than sleep-normal individuals.

  • Shift Work Disorder – Shift Work Disorder is possibly the presentation that first championed the importance of stable chronorhythms, thanks to early websites by Michael J. Thorpy, MD., who sounded the alarm about the health dangers of shift work.  Still, most people don’t know that it can become a diagnostic condition.

SWSD_ClockCoffeeFaceShift Work Disorder is believed to be brought about when the natural and healthy circadian rhythms are disturbed as a result of a work schedule that forces an individual to remain awake during the body’s natural time to sleep.

It affects a percentage of shift workers, making it practically impossible for them to adjust their sleep timing. These people valiantly attempt to manage their lives while they remain chronically sleep deprived.

The next two chronorhythm disorders affect when your body wants to sleep – outside those “natural and healthy” circadian rhythms, even when the rest of your schedule is predictable enough to be practically boring.

EarlyBird_NiteOwlWhile many sleep-normal individuals may not be happy about being required to sleep and wake to a schedule set to accommodate an agrarian lifestyle (in times before the wide-spread availability of electricity turned us into a twenty-four hour society), most are ABLE to do so relatively easily.

Beaten Up by Sleep Hygiene misunderstandings

Website & blog articles about the importance of sleep to health (moving on to tell you how to make sure you get your zzz’s) frequently contain misleading language like that found at the top of an article from the Better Health Channel:

“Common sleeping problems (such as insomnia) are often caused by bad habits reinforced over years or even decades. You can dramatically improve your sleep quality by making a few minor adjustments to lifestyle and attitude.”

Those “minor adjustments,” taken together, make up what is referred to as SLEEP HYGIENE.

The sleep hygiene advice that practically everyone seems to regurgitate as a universal truth turns out to be effective enough to allow sleep-normal individuals turn things around — those individuals who have allowed their perfectly average sleep/wake rhythms to get off-phase with current majority-rules earth norms.

HOWEVER, for reasons science has not really taken the time to understand, some sleep clocks seem to be set much earlier or much later than “usual” – with controls practically rusted shut.

UNFORTUNATELY, individuals with various chronorhythm sleep disorders do not respond in the same way to tips and tricks touted as if it they are supposed to work for everyone who sincerely attempts to apply them.

When these sufferers respond to them at all, it is a constant struggle to remain “regulated.”

Opposite ends of the same pole?

As the Sleep Series continues, I will expand on each of these next disorders a bit more, but I wanted to introduce them together as opposite ends of a puzzling syndrome.

For more about sleep timing NOW see Owls, Larks and Camels or
Sleep Basics affecting Sleep TIMING (Part I of a 3-part article).

DSPSDelayed Sleep Phase Syndrome (now “upgraded” to DSPD – Delayed Sleep Phase Disorder – sometimes referred to as Sleep Phase Lag Syndrome.  Sufferers were once referred to only as “extreme owls”).

Source: sleepdisordersplace.com/ delayed-sleep-phase-syndrome

Unless these individuals are utterly exhausted, the call to sleep hardly ever comes before midnight (in their own timezone) — nor are they ABLE to fall asleep at what almost everyone in their world currently considers “a decent hour.”

Even though they feel the call to sleep at about the same time every “night” (usually after 2 AM), many individuals with this disorder report that they cannot sleep until early morning.

They also report an incredibly hard time waking up in “the morning,” and that they feel exhausted all day if forced to awaken before their body tells them it is time to get up.

HOWEVER, the majority of individuals with DSPS/DSPD report that, allowed to sleep according to their body’s own natural rhythms, they do quite well with a bedtime around four A.M., waking naturally and refreshed at noon.

ASPSAdvanced Sleep Phase Syndrome (“extreme larks”)

Source: canadianfamily.ca/kids/baby/6-ways-to-help-your-kids-get-more-sleep/

Individuals with ASPS are upside down, compared to those with DSPS.

They awaken before the sun (it is often reported that they awaken somewhere between 1:00 a.m. to 3:00 a.m.) and can barely keep their eyes open at all once darkness descends.

The call to sleep ALWAYS comes well before midnight (frequently as early as 6:00 p.m. to about 8:00 p.m.), nor are many of these individuals ABLE to remain awake past their body’s bedtime without the help of stimulants.

Although some claim that their migraines increase when they are unable to sleep and wake when their body tells them to,  when forced to remain awake past their body’s native rhythms, many report feeling “sickish” in a way they find difficult to describe specifically.

Accommodated slightly more easily within misguided but widely-believed paradigms with advice like “early to bed/early to rise, makes a man healthy, wealthy & wise” ASPS sufferers are made fun of for their extremely early bedtimes, but are usually spared the worst of the shame heaped on their DSPS cousins

The lives of the sufferers, however, are similarly limited by the lack of overlap with the majority of the people they know.

Broken Sleep Timing Clocks cause Chronorhythm Sleep DisordersThe important thing to understand that differentiates the individuals with either disorder above from those with N-24 is that, allowed to live on their own schedules, they find it relatively easy to sleep and wake to a predictable schedule, albeit “off” in the timing.

Things get dicey when it is difficult even to determine a predictable sleep/wake schedule, much less to develop life-support systems that can support a life with, seemingly, free-floating circadian rhythms.

When YOUR day is different from Earth Day

  • N24 – Non-24-hour Sleep-Wake Syndrome (also known as hypernychthemeral syndrome or free-running sleep disorder) is what we call the chronorhythm disorder that appears when an individual’s brain & body insist that the day is longer than 24 hours.

The body’s cue to fall asleep gets progressively later each day, so the sufferer is eventually sleeping during the day and awake all night — until, that is, the cycle moves on toward a more standard night-time bedtime for a short period of time.

(“See, you can do it when you really try” redux!)

Unfortunately, the cycle never stops, so a person with N24 has sleep/wake timing that continues to revolve around the clock.

N-24 is QUITE the problem — rarely believed, much less understood — even though it has been recently introduced to the television-watching public in commercials for a drug called Tasimelteon, recently approved for use in blind sufferers.

Click here for an excellent example of what N-24 might be like in YOUR life – especially if you are fairly certain you are NOT a sufferer.

The most important take-away of this article

Not only are sleep timing disorders NOT the result of a lack of will-power or volition, they are also NOT a problem confined to an isolated community of blind sufferers (reported in most of the sleep information you will find on the web and in print.)

It is simply NOT true that chronorhythms disorders are primarily a problem for those who cannot SEE to rephase to light cues.

 

No small problem

As I continue to repeat like a broken record: We have known for DECADES that as many as three quarters of those of us here in “Alphabet City ~ 75% ~ have chronic problems with sleep and sleep timing.

Many of us have trouble falling asleep almost every night — until and unless we are, literally, exhausted. Some of us continue to have trouble letting go of the day even then.

Almost all of us, EVEN when we are well rested, struggle to come to alertness when we awaken, regardless of what time of day that might be — frequently for well over an hour or more after first opening our eyes.

Our eyes may be open, but our brains are still half-asleep
— almost every single “morning” of our lives —

Were you aware that, for longer than the Baby-Boomer generation has been ALIVE, there has been only a small pocket of concerned individuals — dismissed as mavericks, complainers, enablers, alarmists, incalcitrant slug-a-beds, fringe-scientists — who have been interested enough in the quality of the LIVES of those who were so affected to lobby for efforts to understand why?

Except for the handful of sleep specialists, MOST doctors (and shamefully fewer Coaches) are even aware of the existence of the entire category of chronorhythm sleep disorders.

The few who are aware of them are not aware enough to recognize chronorhythm destabilization in what their patients (or clients) say about their sleep habits – if they even ASK about sleep habits!

  • Even the few doctors and coaches who ARE sleep-literate know little about what to DO to restabilize circadian rhythms — because NOBODY really does.
  • MOST continue to insist that following appropriate sleep hygiene protocols will help, even though ADD-aware doctors like Yale’s Thom Brown report that there is A LOT MORE TO IT in our population.
  • We need to call for more research to understand the causes and to improve treatment.
  • The Circadian Sleep Disorders Network was formed to change the unconscionable reality that chronorhythm disorders have been overlooked for so long — a non-profit organization dedicated to improving the lives of people with chronic circadian rhythm disorders.

Recoiling from Révèle

bugleONCE AGAIN, 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 (and growing) website.

Sign up for membership to join them in their efforts.
That will get you the keys to their kingdom.

Parents and partners who start every day with frustrated screaming at a loved one who seems to willfully resist your efforts will probably be stunned at some of the information you will discover on the website of the Circadian Sleep Disorders Network site.

Not only THAT, what you learn will no doubt transform mornings at your house – to everyone’s benefit!

As Peter Mansbach, the founding President of the Circadian Sleep Disorders Network, said during his extremely informative presentation to the 2013 Narcolepsy Network Conference.

“We need to raise awareness, among doctors, school personnel, employers, and the public. We need to get accommodations for people with these disorders, at work and at school.”

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The CSDN Mission:

“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.”
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Why I urge YOU to join

Becoming a member is a NO BRAINER if you (or those you care about) struggle with “earth-appropriate” sleep timing issues.

HOWEVER, you don’t have to be suffering yourself to be a BIG help
to the many of us who are, simply by adding your name to the
CSDN membership roster.

A significantly large membership roster will help us demonstrate the size of the problem and the level of interest to the rest of the sleep-disorders community, the general public, and our law-makers – especially since our difficulties with sleep have not been factored into the sleep disorder statistics appropriately (or much at all, actually!)

Your membership fees help pay expenses as they lobby for awareness, research and change. CSDN needs YOUR support to be able to fund their efforts on behalf of ALL of us.

Check them out!

Among the MANY resources available on the website of CSDN, 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.

N24AwarenessDayPlease Pin it, Reblog it, and Share this article with your social networks TODAY.
“Liking” the page will help it get found in the search engines too.

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As always, if you want notification of new articles in the Sleep Series – or any new posts on this blog – give your email address 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

Want to work directly with me? If you’d like some one-on-one (couples or group) coaching help with anything that came up while you were reading any of the articles of this Series, click HERE for Brain-based Coaching with mgh, with a contact form at its end, or click the E-me link on the menubar at the top of every page. Fill out the form, submit, and an email SOS is on its way to me; we’ll schedule a call to talk about what you need. I’ll get back to you ASAP (accent on the “P”ossible!)
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You might also be interested in some of the following articles
available right now – on this site and elsewhere.

For links in context: run your cursor over the article above and the dark grey links will turn dark red;
(subtle, so they don’t pull focus while you read, but you can find them to click when you’re ready for them)
– and check out the links to other Related Content in each of the articles themselves –

Related articles right here on ADDandSoMuchMore.com
(in case you missed them above or below)

About Comorbidities

2013 N-24 Day Posts from others — THANKS!

Chronorhythm Info Sites & other Related Articles

BY THE WAY: Since ADDandSoMuchMore.com is an Evergreen site, I revisit all my content periodically to update links — when you link BACK, like, follow, or comment on the article, 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.

A CALL TO ACTION aimed straight at YOU!

Chronorhythm Sleep Disorders are SERIOUSLY overlooked & understudied

~ PLEASE ~
Help spread the word about the non-profit Circadian Sleep Disorders Network
— reblog, link, talk about it on chatlists & add your name to its membership rosters TODAY
THE LIVES YOU TRANSFORM will most definitely be somebody’s Beloved.
~ Thank you! ~

 

 

 

 

 

 

 

 

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!"

23 Responses to When your Sleep Clock is Broken

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  7. Wow!! So glad I looked into this on your site. You had suggested that I might be more of a chrono disorder type, and looking at the description gave me a TOTAL “a-ha!!” moment immediately. As in, 2 minutes ago!!

    My story is long-term and simple. I was a night owl, even as a little kid. In my teen years, this became more dramatic, and at ages 14-16, I found myself staying up all night. By 15-16, I actually told my mom “I think I have a 30-hour rhythm. This 24-hour stuff just doesn’t work for me.” Lol! My 30-hour rhythm is simple: at that time, I could easily stay up for 20 hours before I would have to go down for about 10. Then I could be up for 20 more hours again!

    In my 20s, I stabilized *really* well. Until my early 30s, when I got hit with two later-diagnosed forms of PTSD: the traditional kind and the cumulative/chronic kind–onset due to two separate phenomena occurring within 9-10 months apart.

    It’s been 7 years since then, and I’ve only gotten worse again. My body now survives just fine on 3-4 hours of sleep, and sometimes those hours occur from 9p-2a, and at other times from 5a-8a. It doesn’t seem to matter. My body is completely un-tethered, utterly detached, from the regular day/night earth cycle.

    You nailed it once again!! Thank you for writing about this. I would’ve had no idea otherwise!

    ❤️❤️

    Liked by 1 person

    • Love/hate the fact that you relate, but glad you have some info. Check out my other N-24 posts too – and follow the links to the non-profit that supports chrono-destabilizations. You may WELL have a 30-hour rhythm.

      I, too, had a similar chrono-setback due to PTSD (gang mugging at gunpoint) – and, of course, daylight savings time is problematic twice a year.

      Truly glad to hear you found it useful.
      xx,
      mgh

      Liked by 1 person

      • Omg! My dear friend I’m so sorry to hear about that! 💐💐. Wow 😱

        I really love and appreciate the depth of your information; I think it’s incredible! Very useful indeed 👏🏼👏🏼.

        Thank you so much for your encouragement and affirmation, too! 💙

        It’s interesting that since I’ve been detached from the day/night cycle, the daylight savings time changes don’t affect me much at all; I guess that’s my silver lining moment? It makes me shrug and go “meh” because whether I get 3 hours of sleep in 24 or I get 6 hours, it almost doesn’t matter–well, at least, it doesn’t feel any different lol 😉💖. But that’s just me 🌟🌷. Awesome work – I’ve bookmarked your home page; I found this post by searching for insomnia at the top (couldn’t recall the exact chrono term) 😉💜

        Liked by 1 person

        • Thanks, Laina – it’s been a while now, and I’m doing pretty much fine now – except for my sleep struggles. I [relatively] recently wrote a 3-part article about it – hoping to inspire empathy, if you’re ever interested in the details (PTSD trigger warning for Part II – and I do *not* recommend starting there).

          Re: finding the sleep stuff —
          ~~~~~~~~~~~
          Drop down the “LinkLists” menu on the bottom menubar at the top of every page and click the “Master Linklist.”

          From there you can select “SLEEP: Everything you ever wanted to know” (the list is alpha, primarily, and numbered – sleep is around #23).

          All of the links to the sleep posts on the blog are at the bottom of the sleep LinkList, after a bit of an intro, so you can jump to whatever peaks your interest most. TONS of sleep info in those posts, and more to come.

          Thanks for taking the time to let me know you were here and that you appreciate my efforts. You’re a doll!
          xx,
          mgh

          Liked by 1 person

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  11. Dooris Moore says:

    I was recently diagnosed with circadanian. The doctor says it is a kind of sleep disorder, and might be harmful sooner or later. But it seems like the daylight isn’t a big issue to disturb anyone’s sleep, even though i’ve been wakening up during the midnight

    Liked by 1 person

    • Sorry for the delay in response – missed this somehow.

      Circadian rhythm disorders include both advanced and delayed sleep phase disorders (which work within a 24-hour day, just not within the timing most people consider “normal”), as well as N-24 (where sleep rhythms are concerned, the body insists that the day is *not* 24 hours long – usually longer).

      Advanced = “extreme larks” — waking extremely early combined with an inability to stay up into the evening (8PM – 4AM sleeping not uncommon)
      Delayed = “extreme owls” – bedtimes before midnight rare, 4AM – noon sleeping very common.

      The thing to note is that NONE of these fall within volitional control. You can (as people always insist you must) “go to bed at a decent hour” — but that doesn’t mean you will fall asleep until your brain tells your body that it’s time!!

      Very few doctors are even aware of the existence of Circadian Rhythm Disorders – and a great many of those who are aren’t well versed in them, generally, so are unsure how to dx. You need more info. Ask your doctor WHICH kind “circadanian” you have and what kind of “harmful” s/he is referencing.

      S/he IS right that it certainly might be harmful later, btw – and s/he may well be worried about the development of free-ranging sleep rhythms that make it impossible to predict when you will be awake or when you will be asleep (tough to plan, work, relate, etc. once that happens)

      Simply saying you have a problem with sleep rhythms is WAY too generic to allow you to know what to DO about it (even to the extent of looking up i-net info). If you had a “hormone imbalance” wouldn’t you need to know which ones were unbalanced by how much? Same deal here.

      Actually, sleep science has pretty much shown that ANY light at all can be enough to change circadian entrainment, even if you aren’t consciously aware of any problem with it (which may be why you are waking up at night?) In any case, good sleep hygiene NOW will go a long way toward preventing greater problems as you age.

      Thanks for taking the time to comment.
      xx,
      mgh

      Like

  12. busydarling says:

    I’ve been diagnosed with sleep disorder related to circadanian whatever. I don’t agree: my clock works perfectly well, allowing me to fall asleep about 3-4h after it gets dark. The problem is: in summer it gets dark at 10:30pm. The problem is: I’m supposed to live by a man made clock rather than by nature.

    I think everyone who is not influenced by the large difference in daylight here in Northern Europe has a disorder.

    Like

    • Although it’s a hassle, lucky you, to be so responsive to light cues!

      You’ve identified one of the exogenous causes of chrono-struggles — we’re not genetically built for “fake” light cues and moving targets like daylight savings time (hate it!).

      Unfortunately, some who move to a more “human-normal” spot on the planet after years in places like yours find that they can’t “reset” – thus their inclusion in the category.

      If you find, when you travel, you’re still adapting to the light, you are right about your suspicion of misdiagnosis – not that it changes anything in your reality NOW.

      Thanks for your comment – Happy Holidays.
      xx,
      mgh

      Like

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