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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.

Sunday, January 20, 2013

Sleep Matters

I must say that these last couple of weeks have been the strangest I've had in quite some time. Anyone who's even a rare visitor to this blog can't help but realize that I have serious sleep issues.  For example, we're talking about regularly not sleeping for days and nights on end. After a couple of days of unrelenting "awakedness," my family walks around saying, "mom's due for a 'marathon' sleep!" - as everyone holds fingers crossed.

The "marathon sleeps" are wonderful, absolute bliss, almost heaven.  They can last up to 24 hours and one year I had a most unusual one.  Exhausted from all the holiday goings-on, I fell asleep on Christmas Day and slept right through to New Year's Eve.  I only woke up occasionally to mozy on off to the bathroom, gulp down a glass or two of water and literally pass right out again - in bed, of course.  Yep.  This was quite unusual. Typically, a marathon sleep is at least 12 hours, I would guess, and can go on up to 24+ hours.  However, the problem is that the marathon sleeps never ever come close to making up for the time I've lost due to the insomnia. So, that's the setup.

I've been battling the flu, on and off, for at least six months, perhaps longer.  Yep.  My funky immune system just can't seem to get its act together and no matter how much prodding I do, insulting, or even encouraging, my immune system simply doesn't seem to want to listen to me. And, to be fair, I don't want to listen to IT.  I suppose you could say that we're "frenemies." I have reason to be mad at it, although I must point out that I most certainly have NO idea why it doesn't want to be friends with me.  But that's neither here nor there.  

Sleep = a better, stronger immune system.  One of the reasons that those of us with the dreaded CFIDS/ME/CFS and/or fibromyalgia have such a rough time of it ("rough," really? no stronger word can't be found?) is because insomnia rules.  If you don't sleep, your immune system doesn't function optimally.  Of course, there are a lot of other factors contributing to the whole immune system issue, but restful sleep is really key and perhaps prime.  That is, quality counts!

So, what is it that has made this such a "weird" last few weeks? 

My body has decided to attack me from a new direction.  Suddenly, I'm falling asleep right and left.  Then, beginning with last Thursday night or so, I started having an incredibly weird sleep pattern.  I was working at my PC and kept waking up, surprised, because I'd find my head on the keyboard, NUMEROUS times!  At one point I woke up with my head on said keyboard, glanced at the time and discovered that two hours had passed.  I'd be working on my iPad in bed and wake up with a start because the iPad had fallen onto the floor and the noise then woke me up.  Hubs has had a hard time hearing the TV the last few days as we were supposedly watching some of our favorite shows together, because I was, EVIDENTLY, snoring away loudly. (Evidently?  Yes, I swear, sometimes I think he makes this stuff up, just to get my goat!)  

What the heck has been happening to me?  If I'm not careful, I may very well end up having to relinquish the title which so many sleep specialists have bestowed upon me: that of one of the WORST insomniacs they've ever had the misfortune to come across.  Were I searching for titles, "one of the worst insomniacs ever" is not the one I would choose.

But I digress.

It seems that my body and brain have decided "enough is enough."  Body and brain seem to be disgusted that I can't seem to get down the concept of LOTS and LOTS of rest.  I keep postponing rest until a "good" time comes along - my gallbladder and the hypothyroidism pretty good examples.  And so they seem to be trying new battle plans to get the message through to me - that once I feel a little better, I need to continue to rest. Actually, it's much like the warning you get when a doctor puts you on a course of antibiotics: do not stop taking the antibiotic once you feel better but take the entire course.  I tend to take on a small project as soon as I feel better, absolutely convinced that I'll suddenly be healthy and wake up only to discover that the last 38 years have been a bad nightmare, having been lived in some parallel universe and that my health is, indeed, fine and dandy.  

At any rate, my body's newest attempt to combat all the assaults of the past year (not to mention all the assaults of the last few decades) is that it's finally making me sleep.  I'm not sure how long this will last - we all know that in mentioning it here, I've really and truly jinxed myself - but I am so enjoying all this overwhelming sleep at the moment, even if I AM more disoriented than usual, time and day-wise.

BTW: did you know that you can get all itchy from a virus?  I've been going through a bout of itchiness like I've never had before and the med I take to prevent hives/itchiness has not been able to stop the itches.  I may soon go mad!  On the other hand, what validation: to know that this is not "imagined," but is a real scientific fact.  I'll take whatever validation the medical community reluctantly doles out!

The most frustrating part of this flu at the moment is that I feel great-ish one day - or even one hour - only to feel myself suddenly sicker than even before, running a high fever, sweating, unrelenting pain.  The sweating persists even as the fever goes away, my body temperature returning to my normal 95.5-ish.  But that, the sweating that is, is a subject for another day.

As always, I hope everyone's feeling their very best, only better.  Ciao and paka. 

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  1. Glad you've had a better quality of sleep hun, hope the flu symptoms ease up too. I'm a spoonie who's reading yr blog @ 2.18am..

    1. Thanks ever so much, Mandy! I do hope you get a lot of spoons this week. xx

    2. I hestate to bring this up...but after my own nightmare of 16 days in hospital around mhaving my gall bladder removed...I started falling asleep at my keyboard, thete is something quite individual in the experience of waking up with your face mashed into your computer keyboard....I discovered that I had a "shared bile duct infection" caused by spasming of my shared bile duct. This problem is in fact very common, but rarely easily diagnosed. It is treated by cutting the shared bile duct sphincter muscle, so that the duct remains open all the time and allows for constant bile flow from over active liver and/or pancreas or spleen.

    3. Hi Melinda! Thanks for writing in. I am a bit confused, however. How does the bile duct infection tie in with sleep? Sorry, not at my best at the moment. (Duh! I think I just explained that above! ;)). xx

  2. No way to know if it is related to Melinda's suggestion or just a new insomnia pattern, Irene. Time will tell, I'm sure.

    Just wanted to pipe up that about 4-5 years prior to being dx'd with Fibro, I had a long period of Narcolepsy and found myself asleep in my computer chair a lot! At that time I was also quite agoraphobic, could only leave the house with my hubby. I had panic attacks too.

    It's interesting to note that Narcolepsy is a central nervous system disorder. Fibromyalgia is said to also be a CNS issue, where pain (and other stimuli; sight, sounds, smell, touch) is greatly amplified. Which makes our energy deplete that much faster (causing extreme fatigue).

    I have had severe obstructive sleep apnea since about that time as well. I had gone in to have a sleep study due to snoring. Was found to stop breathing about 114 times an hour, sleep apneas.

    The reason I bring up all the above points is that your new pattern has been my normal for the last 3-4 years. I too have a pattern of insomnia, followed by marathon sleep where I can't stay awake OR asleep more than a few hours, sometimes for days. I sometimes am able to sleep during regular nighttime hours. Inevitably, I am back sleeping more during the day time. Whether I nap, or not makes no difference.

    I have not been to a sleep specialist in years, with so many other issues going on it was not high on my priority list. Yes, it is likely about time I get a referral. Whenever I finally get a new family physician, I will do that. When was your last sleep study?

    I hope this isn't new sleep pattern for ya. It royally sucks! If it is narcolepsy though, don't be doing any driving :)

    1. Hi Shannon!

      I last had a sleep study about 2 years ago. No reading since you need to fall asleep for at least 10 minutes to get a reading of any sort and I failed miserably in that. I had another sleep study done that wasn't very accurate for many reasons but they were able to eliminate sleep apnea.
      LOL about the driving. I've not driven but once (taking daughter to emergency room which started her health nightmare) in the last 10 years at the very least. Not strong enough to be a passenger let alone a driver! ;)
      Doctor is pretty convinced it's not narcolepsy. We have a plan to do the specialist rounds for many new and old problems as soon as flu season is over. Sleep is absolutely the bane of my existence. We really need to get that under some sort of control. However, if I sleep too much, that's a blessing of sorts. I've had too many decades of so very little sleep. xx