Help—Someone Stole My Internal Clock

So, guess what time it is. I’ll give you a hint: it’s dark outside. All I hear is the ticking of the clock here in the family room, a few tractor trailers going by and hitting the rumble strips on the nearby bridge, and the sound of these keys clicking as I type. The baby in the apartment below isn’t even crying right now (though time is certainly not in charge of those outbursts) but is sleeping like the rest of the world. No, the late night shows didn’t just go off. The early morning shows are actually starting about now, though I never watch them.

It’s 5:16 AM. And I didn’t just get up.

It’s funny (not really) how some rare nights I collapse into bed at midnight like a normal person. Sometimes it’s because I did one or two too many things that day and will pay for it the next. Or maybe there’s no obvious reason at all for me to be tired, like when I’ve only been up for about six hours. That’s a favorite of mine. In both cases, you never know when I’ll wake up, or rather actually get up, as I generally awake umpteen times during the night—or I mean, during the time I attempt to sleep.

But then most of the time, the world goes to bed, and I sit down and twiddle my thumbs at the computer, playing Angry Birds (I know, seriously?), making jewelry, writing songs, sending emails, finding gluten-free recipes on Pinterest, or occasionally doing the dishes. I twiddle for anywhere from three to six hours and finally get my husband’s lunch ready for him and go to bed. And then I usually lay there for a good hour or more, until after his alarm goes off a time or two or three and he gets up, takes a shower, and gets ready. Soon I hear him leave and lock the door, at which point I finally fall asleep well after the sun has begun to appear, turning the blinds that should be quite dark an annoying shade of morning. Good night, morning.

What’s even more fun is that you’d think those nights I go to bed “early” (midnight), I would then get up a decent eight or nine hours later. But actually, sometimes I end up having to get up, either from unignorable wakefulness or insufferable dreams, just about three or four hours later. Or, more often, I sleep something like fifteen hours and get up just before my husband gets home from work.

I’ve always been a night owl. I remember the thrill (yes, I’d say at the time it was a thrill) of staying up until, say, 10:30 at night reading kids’ books when I was like nine years old. That might have happened three times. Then by the time I was fourteen, I would stay up and write, in bed, until 11:30 or midnight or 1:00 AM. I thought that was late.

By the time I was in my late teens, I was staying up until 3:00 and 4:00 AM. There for a while, I thought I was just a night owl. But it didn’t make sense for it to just get later and later like that, as I would then have to sleep later and later. (This all went over really well with my family, by the way.)

By the time of my fibromyalgia diagnosis, the late nights were not shortening, and when I finally went to bed one morning to the sound of my dad getting up to get ready for work, I was a bit disturbed. This was crazy.

Turns out, one of the five bazillion symptoms of fibro is a reversed sleep cycle, which means wakefulness and best brain energy (key word, best) at night, when you should be in bed. But that then smashes up against another problem: unrefreshing sleep (we don’t go into the deepest level of sleep, we wake up a lot, dream a lot, etc.), which means we practically can’t wake up.

Now there is really no time that’s off-limits for me to be awake during and no time off-limits for me to be asleep. I used to feel bad, almost guilty, like I was doing something wrong when I would stay up until 1:00 … then 4:00 … then 7:00. But there must be something about 8:00 AM, because when I reached it, the numbers quit bothering me like that for some reason, almost like they lost significance to me. Like, I’ve done it—I’ve finally stayed up all night long, until all the world is up and running. My body officially has no timepiece it lives by, and they’re all just numbers to me now.

Now, what to do about all of this, I have no idea. The best solution I can think of is a sleep medicine besides Melatonin and muscle relaxants, which I’ve tried. However, that solution bothers me, as I want to fix the problem that’s making me not get refreshing sleep, which I feel is at least one of the main culprits in many of my problems, instead of just treating the symptom. But maybe I’m living in a dream world. At any rate, the problem is at the top of my list for when I go to the doctor next.

Meanwhile, this complete nonexistence of an internal clock grew to bother me so much, that I finally took the topic to a popular fibromyalgia page on Facebook recently, simply wanting to know if anyone else with fibro was severely dealing with this aspect. I knew the admin of the page often took questions others posted and reposted them as a regular status, gaining many, many more views and responses in the process. So I posted:

The admin did soon repost it, and I could not believe the responses:

Forget what the people suggested in their comments—almost a thousand people liked it?! (Which in my book is a quick way to say yes.) Here I am, in the middle of this ridiculous, helpless, sleep/no sleep nightmare, wondering if maybe I’m just not trying to go to sleep, or maybe I’m just not trying to get up, and I see this. Somehow I don’t think a couple thousand people are fed up enough with this aspect of fibro to bother finding a fibro page on facebook and participating, sharing that they deal with it too, what they’ve taken for it, what they’ve tried, and how they thought they were the only one, while being too lazy to try to do anything about it.

We’re all in the same boat.

And with that jaw-dropping discovery, I feel vindicated. The proof from the response is more powerful than the responses themselves. I read as many as I could, like comments about sleep number beds and drugs I’ve never heard of; none of us has an answer or a cure for this problem.

But somehow knowing that as I sit here, the clock ticking, the trucks going by, the morning now here, I’m in the company of several hundred other sleepless people, I suddenly feel . . . a lot less alone, even if just in this one struggle.

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A Hope, a Longing, and a Comfort: Three Fibro Anthems, Part III

At church one Sunday shortly after my diagnosis, the congregation sang my third song. I had never heard it but honed in on the last line of the chorus:

 My Healer will see me through.

That was enough for me. And as I mentioned in Part I of this post series, if that were the entirety of the song, it would be enough. The song stuck in the back of my mind for over a year, and finally just about a month ago I decided to track it down. Come to find out, the whole song, by Elevation Worship, applies this time and is nothing but an encouragement in the face of unanswered questions, pain, and discouragement. It is not just a cry to God for help in our troubles but a declaration to Him that we believe what He has promised to do and trust that we—and our struggles of all kinds—are in His hands. And that that is enough.

Not only does God see us in our pain and struggles, He has made promises that we know He will keep:

God who answers prayer,
Faithful you will be.
In my darkest hour
Your promise I believe.

Bless the Lord with all that’s within, O my soul.
I cry out with all that I am, make me whole.
Here I stand, I place all my hope in you.
My Healer will see me through.

No, there is not currently a cure for fibromyalgia. And it is not my calling to devote my life to that future happening. I have no idea if there will ever be one and how close they may be to one. I am not banking on a cure for relief from this prison of a body. Maybe that’s just pessimism, but it’s just not flitting in the back of my mind as a probable happening.

I know that God can and does heal and that sometimes He doesn’t, always for the best reasons, as He knows far, far better than any of us what is best. Sometimes He chooses to heal. But sometimes He says no, even when we ask Him to.

So even though my Healer did not choose to heal me when some loving friends of mine implored it of Him several months ago, even though He has not changed that answer, even though in my hardest nights life in this prison feels nothing but sickeningly dark, lonely, and hopeless, even though He may not heal me while I am on this earth, He is still my Healer, as one day I will be healed, and He will still see me through.

I am honestly not sure that, if I did not know Him, I would still be here today. I may very well have reached a level of despair that nothing but Him could have helped. He literally has seen me through and holds me in His hands, even when I am in gut-wrenching pain or crying inconsolably or certain that I cannot live this way any longer.

People can comfort me. Laughter can comfort me. Music can comfort me. But only my Healer is there for every tear and every breath, silently holding this life in His hands.

~~~~~

If you missed them, make sure to take a look at the first two posts in this series. And also, if you have a fibro anthem or two of your own, please comment and let me know! The more music, the merrier. 🙂