So you have narcolepsy, but you’re getting treatment, right, so what’s the problem?

I wake up tired, drive tired, cook tired, clean the house tired, and everything else I do, I do it tired. I don’t talk about living with Narcolepsy much, because there is so little understanding and I’m too tired to teach. I’m going to talk about it here, but not going into the cataplexy part, which is an additional little goody not all who have narcolepsy, experience.  I just got lucky, myself, to be one of those who does.  All my doctors know Narcolepsy is part of my medical profile, but none of them, not even the sleep doctor, really knows what an all-encompassing condition it is. There is no cure, and treatment is directed at minimizing the symptoms. It took many years for mine to be diagnosed, and even though the field of sleep medicine as a specialty is growing, the fact that all the body of medical knowledge is also growing, insures that few of the medical professionals which I may encounter on a regular basis, knows how Narcolepsy effects a life.

This is true even with my primary physician.  When I went in for my physical this year, just before turning 51, he noted the ten pound weight gain.  What he didn’t know, was that between then and starting a couple of months prior to my previous year’s physical, I had lost thirty.  My blood pressure was up, and that was what he was most immediately concerned about, so he increased the dose on my BP med, and offhandedly stated, “and if you decide to get some exercise and lose some weight, we can always decrease it again”.  This is not a doctor who is insensitive, it was just a remark made without much thought to the rest of my “clinical picture” in that moment.  When I informed him of the “decision” I made a year before, and my success, but also the long cold winter and personal losses/adjustments, and how they discouraged me and I gave up on it, he then looked at my age again and said (probably trying to soften the blow, but actually managing only to discourage me further) “well, you’re right there at menopause, and it is just about impossible for women to control their weight after menopause”.

Thanks, doc, thanks so much.  I saw my Rheumatology nurse practitioner the following day and was embarrassed to burst out in tears at the sheer frustration and humiliation of it all.

When I was in high school I ran five miles a day because I wanted to, not because I was on a track team or cross-country.  I played soccer, and after graduation I also loved to work out and stay busy.  I was a pudgy kid, and really had to stay active in order to not be a pudgy adult. So when all this stuff started I was a hundred and thirty-nine to 142 as my weight range. Probably, now that I think back, my narcolepsy may well have been triggered by a flu shot, since we were required to have those as nursing students and when employed in nursing. Some research also has indicated the possibility that the flu itself can nudge someone already genetically predisposed to narcolepsy, into it.  Jury is still out on that, and as far as how it effects me, it is neither here nor there.

I have suffered from fatigue since my twenties, and was debilitated by it by my early thirties. Narcolepsy was finally diagnosed in my mid-forties and now I am fifty-one. Sleep is crucial to good health, and if you have had poor sleep, unrestful and unrefreshing sleep for a couple of decades, it’s safe to say there are some effects to the body which treatment is not going to reverse even if it can help with the quality of your rest and sleep in the present. Goodness knows, sleep deprivation does wacky things to a person’s brain and body in the short term, but prolonged for years? Well, just multiply the short-term stuff:

Lack of restful sleep unbalances the peptides that control the sense of hunger and satiety. Ghrelin stimulates appetite, while leptin stimulates the sensation of satisfaction of the hunger, the sense of being filled. In my thirties I described to my doctor that my eating was like constantly throwing more “fuel” into a stove in hopes of stoking the fire, when the pilot light just wasn’t lit. No matter how much I ate (and I craved the fast-sugar) nothing seemed to satisfy my bodies desperate need for fuel to convert to energy, but it wasn’t a lack of fuel, just that none of it was being converted to energy. Of course this leads to weight gain. And of course when you already feel tired and sleepy all of the time, exercise is nearly impossible to consider, or carry out.

Just 24 hours without sleep can render you “impaired” to a degree that is equal to that of being too drunk to drive a car.

Two days without sleep you will start to feel the effects to your neuromuscular coordination, your skin, eyes and hair will lose luster, dark circles will appear under the eyes.

After three days you will begin to experience “micro-sleep” episodes.  Your brain will go into mini-sleep states lasting a few seconds without your even realizing it, and this is uncontrollable.

Day four you will probably start having muscle-twitches (another partial sleep state) blurry vision, nausea and definitely will be having some issues with mood swings, followed shortly (day five) with hallucinations and paranoia. (See the accounts of Randy Gardner and Peter Tripp)

Sleep deprivation of five days and beyond can lead to severe irritability, delusion, complete psychotic breaks, and long-term, possibly permanent psychological issues.  Thinking is fragmented, and you are neither alert nor even fully conscious at this point, and very apt to forget what you were doing or saying, right in the midst of doing or saying it.  In studies of rats, by day eleven without sleep, death ensues. The longest record in humans for not sleeping is just over eighteen days.  However, without EEG recording, it would be impossible to know how often someone actually went into micro-sleep episodes which are undetectable to observation and to the individual having them, in most cases.  Guinness Book of Records no longer recognizes “records” in this category due to the high risk of serious mental and physical health injury.

A week into sleep deprivation, and you will really be seeing a disconnect between what your mind is trying to get your body to do, and your body’s ability to do it.  Extremely lagging reactions and movement, as well as inability to perform simple tasks such as tying your shoes, or simple addition.  At this point you will have difficulty with concept of time, and even concept of self.  This is a very scary and disconcerting condition to be in.  Especially when you go to bed and “sleep” eight or nine hours a night and don’t even know that you are sleep deprived.  Since sleep consists of phases, and all of the phases are necessary for proper function, brainwave recordings of someone with narcolepsy show that we do not enter all of the stages of sleep, jump inappropriately between the stages, and go into partial sleep states during waking hours.

Lack of restful sleep impairs your memory, judgment, attention span, ability to learn, decision-making capacity, ability to plan, ability to catch and correct your own errors, and makes you slower in all functions.  Lack of sleep causes depression, increases risk of stroke, hypertension, heart attack, diabetes, and death by any of the above as well as accidental death and other injury from lack of alertness and slowed reaction time.  It prematurely ages you, and it dulls your skin.  It increases your cortisol levels, which breaks down collagen, which leads to lower muscle mass, weakness, fragile skin and bones.  Sleep deprivation also increases risk of cancer.

Is it any wonder that I am prematurely aged, can’t remember stuff, can’t get organized, and perpetually exhausted?  Give me a break!! Heck, I’m giving myself one. In fact, that is just precisely what I have been doing this year, other than the blog and what my family needs from me.  Sometimes it’s the only way, and if friends don’t understand, well, that’s just unfortunate.  It does have the benefit of driving me to the Lord as a refuge and very present help in times of trouble.


Next Entry: Lord Fill My Cup?

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