About Me

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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, March 22, 2013

Friday Tidbits: Naps & Sleep

This "child" knows to take a nap when need be and for just how long! (Knock on Wood!)

Those of us with insomnia, the legacy of CFIDS/ME/CFS and/or fibromyalgia, are often made to feel as if we are at fault if we ever have the "nerve" or gall to nap, much less sleep, during the day.  We are not just taught that napping or sleeping during the day is a sin, but that it's the mark of a lazy person, a person who wants attention, and any number of other insulting accusations. 

When hubs and I started the sorely-needed remodeling of the house (eons ago) and were getting all the details worked out with the contractor as to which weeks and days would be best, the hours workers would be coming in and leaving, and all the little minutiae that ends up being a sort of Mt. Everest,  the glaring fact of my illness was obvious.  What wasn't obvious, however, was that I suffer from severe insomnia and never know when I'll be able to fall asleep or if I'll be able to sleep.  After all, I live my life going 24-72 hours without any sleep on a regular basis.  The house practically sings "Hallelujah" when mom finally falls into a sleep and quietly, VERY quietly, rejoices. 

I know that the contractor wasn't being mean nor nasty when after one of our long planning sessions he said to me, "so, what's this insomnia all about?  You sleep during the day and stay up all night?"  Oh, if only it were so easy!   Of course, his words weren't  meant  maliciously.  Good grief, we hadn't signed on the dotted line yet and so you can bet your bottom dollar (or quid or franc...) that he was on his best behavior when he made this "innocent" statement.  He had absolutely no idea that he was hitting a sore spot.  

I felt like saying something nasty in reply - not because of him per se, but because he was just one too many people in too short a time period to say the same thing.  I know that it's difficult to understand what my sleep is like - or not like.  I've even had a neurologist who labeled my sleep as "malignant insomnia."  He was technically wrong about it being "malignant insomnia" because that sort of insomnia is now considered to be genetic, fatal about a month after onset, though if you do extensive research on the subject, it's still a murky area.  What my neuro meant when he called my insomnia "malignant" was that my insomnia was killing me off slowly.  For example, the reason for my body's inability to produce Human Growth Hormone - without which I would and almost did die - was due to the insomnia.  Even all the medications that I need to take because of my severe insomnia (which don't work much at all) will shorten my life by a lot.  (Don't worry: I have a family history of people who, if they should die before the age of 91, everyone mourns that the person was way too young to go!!)  And so it goes, on and on and on...

Furthermore, the reasons for sleep disorders are varied.  Yes, there are five major categories of sleep disorders which have been defined by the Sleep Disorders Classification Committee of the American Academy of Sleep Medicine.  What is cruddy is that unfortunately almost all CFIDS and/or fibro patients get most of these five categories at one time or other.  Lucky us! 

  1. Disorders of initiating and maintaining sleep (insomnias).
  2. Sleep-related breathing disorders (sleep apnea).
  3. Disorders of excessive somnolence (hypersomnias).
  4. Disorders of the sleep-wake cycle (circadian rhythm sleep disorders).
  5. Dysfunctions associated with sleep, sleep stages, or partial arousals (parasomnias).

In fact, I've been to more sleep specialists than I can remember.  I've had sleep studies - the last was ineffectual since five minutes (count them, just five!) were needed for anything to register on the monitors, but I couldn't seem to accomplish even that.  The last neurologist, who has known me for about 30 years, some years as a patient and some years as a family friend, is rather good at what he does.  He's had patients whom he has sent to NYC and to Stanford or Johns Hopkins and those neurologists have called him and said, "why do you send us these people?  You know that if you can't fix it, no one can."  He's helped people who could only get 7 minutes of sleep at a time.  He was so sure that he could fix me but one day, after a few years of going to him, trying someone new, going back again, and repeat, he finally threw up his hands and said, "OK.  I admit defeat.  I don't know what to do or if anything can indeed be done, but your options are..." and he proceeded to name five major medical centers known for their work in insomnia.  Irony: I was and have been too sick to go for the work-up and sleep study so far from home and for sleep studies that are done in such a cruddy way that they yield little or no info on really serious sleep disorders.  (Another post, my lovelies!)

Further irony, the one neurologist who was the "golden boy" in my history, that is, who helped to diagnose me after so many years of all the problems which would become known eventually as fibromyalgia and CFIDS/ME/CFS, now lives in the DC area again.  As a young doctor, he testified before congress about the brain damage done to boxers, an indication of what a smart cookie he is.  He moved from our "town" to another for multiple reasons, but we remained good friends until life got in the way: children born, living miles away from each other, and so forth.  

Hubs and I have been so desperate in the last year or so that we finally contacted my "hero" neurologist to see if he could suggest a good sleep specialist since things were getting so out of control.  Our hero asked for my medical charts to be sent to him in order to see what has been happening to me in the last almost 20 years since I'd last seen him.  (Can you imagine how many records were gathered and sent???  Scary!)  Instead, much to our delight, this neuro not only agreed to see me, unofficially since he is head (read employee) of a top hospital in the DC area and there was no way that we could get me to be seen officially, so informally, staying at his home was presented as an option.  The shocker was that in talking to hubs, our neuro realized how incredibly severe this insomnia problem of mine had become and offered to come to our house for the weekend to do his magic here, knowing how stressful a trip would be for me.  Talk about house calls (5 hours away!)  Don't we all need doctors like that in our lives?  

But finally, today on the news I heard a story about how good napping can be.  However there were time limits set which would differentiate just how long these naps should be in order to be helpful rather than making you feel lousier, as often happened when "power naps" came about.  Knowing my "golden boy" as well as I do I am sure he would have insisted that I sleep whenever it is possible for me to do so - he has such great instincts and is so attuned to his patients that it's almost spooky! - not having to worry about being called lazy or strange since lack of sleep is associated with many dangerous health problems.  Even napping can be beneficial and according to sleep experts there are several ways this can happen.  

  • The most beneficial naps during the day tend to be short because if you sleep less than 20 minutes you don't enter slow wave sleep and once you awaken you don't feel groggy.  (This is also known as a "power nap.")
  • Even though naps under 20 minutes don't have the effect of a good night sleep, you still get benefits such as improved mood, concentration, alertness, and motor skills. 
  • A nap of 45 minutes can help improve the brain's sensory processing and creative thinking.
  • If you are lucky enough to get a nap of 90 minutes, you will have had time to go through all the stages of sleep and won't wake up disoriented.  

The above recommendations and observations are for healthy people who may have not gotten proper sleep for a few days or even a week or two, due to family problems, financial worries, scheduling problems and the like.  Imagine how much more important and pertinent this is for patients with severe insomnia.

So sleep on, babies!  Get it when you can!  

As always, I hope everyone is doing their best, only better.  Ciao and paka! 

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  1. Wow, you have a couple of great docs in your life! And I am happy to see that there are, slowly, increasing numbers of articles here and there about sleep, napping -- even in the workplace! -- and if you haven't already read it, you might enjoy Martin, Paul (2002): Counting Sheep: The Science and Pleasures of Sleep and Dreams. St. Martin’s Press.
    It was just this morning that it dawned on me that perhaps one of the reasons so many docs (and others) are blase (can't get the accent to happen) about complaints of poor sleep is that they are so deprived of sleep themselves during medical school -- and they "did just fine" (excepting the occasional dead patient).
    On the other hand, a dear friend who was the consumate napper finally, FINALLY, went and got a sleep study, and yep, sure enough -- 16,792 cans of RedBull later -- she's got pretty bad OSA. At least now she's getting good sleep.
    May you get yours...

    1. Yes, I've been really lucky when it comes to some of my doctors. And thank you for the sleep book recommendation.

      I sat on this comment for a long time because I know that each of us has such vastly different experiences, different illnesses, different degrees of health or illness and I don't like to hurt people's feelings. However, I feel so strongly about this that I couldn't let the observation simply sit here. When it comes to the issue of sleep for med students and those in training, I beg to differ. I see that the new doctors - who aren't allowed, by law, to put in the hours per week that the "old" ones did - as vastly inferior. Furthermore, I saw this over and over again at the "major medical center" which was our "home away from home" for just over a year when my daughter became so ill.

      In going for so many hours and hours without sleep, doctors developed muscle memory that made diagnosis and treatment more instinctual. I'm extremely disillusioned with the newest doctors, a huge understatement, and feel that this is one factor as to why healthcare in this country is going downhill. For many reasons, the best minds/brains are no longer going into medicine and the new crop with its vastly decreased hours are absolutely scary in their inferiority. xx