To Sleep or Not to Sleep?…So Done With That Question!…Fibromyalgia and Sleep II

What do I say about fibromyalgia and sleep that everyone doesn’t already know?…I said that in my last post and I’ll say it again!… What do I say about fibromyalgia and sleep that everyone doesn’t already know?

Because all of us with fibromyalgia know that sleep is IT…it’s the crux of everything that is fibromyalgia…isn’t it? I mean, when I really think about it…everything fibromyalgia revolves around sleep…got a bit…not enough…need more…need too much…can’t sleep…can’t stay awake…can’t wait to sleep…it’s never enough…etc etc.

But really, it all simply comes down to…you don’t get some…it’s very bad…you get some…it’s better. Yes, all is better with sleep.

I mean, we all “eat, sleep and breathe” sleep…so really, what can I say about it that everyone doesn’t already know? Again, as I’ve said before…maybe nothing…but as I said in my last blog post, I have made a few (surprising) observations about fibromyalgia and sleep over the course of my almost fifteen years of trial and error living with fibromyalgia without taking any ongoing medications…and on the outside chance that they may have something to do with the fact that I am managing to get good sleep in spite of having fibromyalgia…I thought I should share them.

So let me explain.

As I explained in my previous post, at some point over the years I came to think that there seems to be an optimal amount of sleep for me to get each night (maybe somewhere between seven and eight hours)…such that going under OR OVER(!) the amount is not necessarily desirable. And when I say optimal amount of sleep, as I also explained in my previous post, I’m talking about this optimal amount being the kind of sleep you get when you get through a good night of four or five sleep cycles and therefore get that deep-feeling restorative sleep.  

Now for my first maybe decade with fibromyalgia, I was (unintentionally for sure) helping to sabotage my chances of getting that oh-so-needed restorative sleep. I got in a vicious circle of being so exhausted that I would be doing everything slow throughout the day due to exhaustion and fibro fog…then I would need to stay up until later than I had wanted to (and should) to get everything done that I wanted to or needed to get done for that day…so you know the drill…the next day I would continue to be exhausted…and so on…and so on…it would just continue day after day, night after night, week after week, month after month and yes…year after year.

And as I’ve said before, I’d rather be doing things feeling exhausted and with whatever my current symptoms are, than not be doing the things I feel I need to and I want to do, at all. While this determined approach has certainly had its upside, it also definitely helped perpetuate this vicious circle…but I guess I have to take the bad with the good.

So about four or five years ago I got fed up with myself and I worked really hard on breaking this bad pattern that I had for so many years, pretty much since the onset of my fibromyalgia, because not only was I staying up too late, but the worst of it was, it was also causing me to get disjointed sleep most nights instead of four or five consecutive sleep cycles.

By the time I would get to the end of a long exhausting day, my body would feel like a huge concrete block, just totally immoveable. I would sit down on the couch at the end of the day, stubbornly wanting to finally have a bit of time for myself to watch a little TV and unwind before I went to bed…and forget it…pretty quickly my body would turn into “the block”…and then there was absolutely no way it was going anywhere anytime soon! I would most often just suddenly fall fast asleep on the spot, slumped over on the couch, still sitting up half the time, then wake-up half way through the night and then finish up a thing or two before going to my own bed…causing me to get disjointed sleep again and again and again.

I was rarely getting enough consecutive sleep cycles to get ANY restorative sleep. Most nights I would be so exhausted, I would need to go through maybe a couple sleep cycles on the couch, often around three hours, just to be able to get up and go to my own bed. Yes, it was such a vicious circle…chronic fatigue is just brutal (I know you know!). I was so tired of being so tired.

So I finally (finally!) made some changes in my night time routine and just diligently kept at it, summoning all of my willpower to once and for all break this bad pattern, especially not allowing myself to fall asleep on the couch anymore…and for the most part I was able to do it…because I guess basically I just got tired of living that way and didn’t want to do it anymore (isn’t that always the way?). I knew I was very fortunate to be able to sleep fairly well when I did sleep and I knew that I(!) was the only thing sabotaging myself from getting even better sleep by getting consecutive full sleep cycles…in other words…restorative sleep.

As I said in my last post, I’m certainly not a sleep expert but I think I can just tell, when I wake up, if I was able to get that…there’s a feeling of being rested and having a sense of well-being and grounded… that is just not there if I have a night of disjointed sleep.

So having broken this bad pattern, most nights now I fall asleep within what feels like five, maybe ten minutes at the most. I’m very tired from pushing through all day, but usually not totally and completely exhausted like before. Once in awhile I’ll nap during the day when I’m fighting through extra exhaustion and/or a flare up of symptoms, but not really that often‎…it’s just hard to find the time for it. And if I wake up during the night, I usually pretty much fall back asleep immediately after changing position to get the aches out.

On the really good nights, I am out like a light until my alarm goes off around 6 hours later on weekdays, and when I wake up I feel rested, like I’ve gotten restorative sleep. On the weekends I try to get more sleep, nine hours seems good right now to make up for the lack of sleep through the week (yes I know…it should be more than six hours a night on weekdays…I am still working on that!).

Now I said earlier that I worked on improving my bad pattern because I was fed up with it…but what I didn’t say…is that I lived with this pattern for many years because I told myself it was probably okay that my sleep was “disjointed” so much of the time…I convinced myself that it was fine as long as I was getting the hours of sleep, that it didn’t matter if they were broken up. So when I began working on improving this bad pattern, I think I just wanted to not be dragging myself off the couch in the middle of the night to go to bed anymore. And since I began working on breaking that vicious cycle years ago, it’s been so great to leave that behind…BUT…in the last, maybe year, something VERY SURPRISING and TOTALLY UNEXPECTED has happened.

I guess it has happened so very gradually that I wasn’t noticing, but awhile back I suddenly realized that my chronic fatigue is now largely gone!

Oh, it will still kick in if I don’t get good restorative sleep at times but I’d say I am moving more towards having NORMAL(!) ENERGY(!) each day. WOW!!

Now this has been HUGE for me to realize this (cross my fingers)…and not to take anything away from that…but as I said in my last post, I definitely could still do a bit better. I have a lot I’m trying to do ‎in life, and I haven’t wanted to compromise more than I have to. So I really push myself (at the expense of more hours sleep at times), more than I should at times I’m sure, but in some ways it also feels like I’m building up my resistance bit by bit by pushing myself, so maybe that’s a good thing. But really…with fibromyalgia…how do we ever know?

Sometimes I get a lot more sleep and I have just as much or more symptoms during that day, so I wonder, what was the point of sleeping extra and losing that time to get things done or do something fun or just relax?…oh well..I guess the restorative sleep still helped my feeling of well being which is so much better than the oh-so-familiar “walking corpse” feeling I wake up to when I don’t get enough sleep.

Yes, if we can get restorative sleep…I mean…what isn’t better than that?

We likely are less stressed overall, handle any stress better, have better energy and focus to get things accomplished, and therefore (in my case anyways) get to bed at a good time to keep getting good sleep. And yes, now that I think about that, there would be snowball-effect benefits of all these things turning into a virtuous circle working for us. And maybe most important of all (I’d be willing to bet)… restorative sleep is vital to a healthy brain, and as apparently fibromyalgia is a “brain thing”, that can only be good for us…likely very good! And yes, especially for those of us with fibromyalgia, good sleep just clearly makes the difference between a wash out day and something a lot better…A LOT BETTER!

So I DO sleep fairly well now…it sounds like better than lots of “regular” people I know who don’t have fibromyalgia! Is it the exercise regimen that I keep up? Or that I wear myself out from being up a lot of hours each day so I really sleep deeply for the shorter amount of time that I do get to sleep? Is it the fact that I limit my alcohol and caffeine consumption or is it the banana that I often eat before bed lots of evenings because bananas are one of the foods that apparently are good for sleep? Maybe, all of the above? Honestly, I don’t really know.

Or maybe…am I just totally lucky I seem to be able to get restorative sleep? Again, I don’t know and likely will never know for sure. But I am not taking any chances by changing any of the things I do. To me, they are such small things to do, small sacrifices to make, for (hopefully) the improvements I’m getting in return…and…I AM determined that I AM NOT GOING BACK. I want to FEEL BETTER FAR MORE than anything else …so I will push myself to do WHATEVER I NEED TO DO.

And…what I know is real is I believe that restorative sleep SAVES ME…getting it is what I need to do.

If I could go back and tell my early fibromyalgia self to work on just one thing, it would be to work on getting restorative sleep. I would say, if you need to exercise, if you need to push yourself to not excessively nap during the day, if you need to figure out how to handle stress better, if you need to limit or avoid alcohol and caffeine and whatever else affects getting quality sleep for you….do it! JUST DO IT! I think over the years this is what I have ended up eventually muddling through by trial and error, to do. And it would have been nice to get here a lot faster…but…I’m SO glad to be here now…and I plan on staying!

And as I’ve said before…I know I often come back to this…I can’t believe I can be the only one who can get here…