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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I May Have Forgotten to Title This

I should probably be in bed now, attempting to go to sleep. I am tired as always but actually leaning toward sleepy for once. But suspecting I might be nearing the realm of passing out from exhaustion by earlier this evening, I decided to take a brief nap—meaning three hours long. That’s brief to this body.

So thanks to that, I was able to make it through the rest of the things that had to be accomplished before I went to bed. But also thanks to that, I have a feeling that if I went to bed right now, I would possibly have a similar repeat of last night’s experience, which is now becoming more and more common, and be up by 5:30 AM, like a senior citizen or something.

It’s funny (not really) how the emotions of this unpredictable body rise and fall by the hour. Some hours I feel okay, meaning not crying out of despair at all of this, and think, Well, there’s no reason to write today—I’m actually doing okay. And then give it a day or a few hours and I’m ready to get one more of the countless burdens off my chest. Tonight is one of those nights.

So I sit down and start writing a post on a completely different aspect of this wind-driven life. I get two very small paragraphs into it, leading up to my next thought, and come to a dead stop with the last period.

What was I going to say?

Maybe it’s the fibro fog. That’s very likely, common as it is in my life anymore.

Maybe it’s that the usual memory lapses are being exacerbated by sleeping from 11:00 PM to about 3:30 AM last night and getting up out of pure disgust with the constancy, vividness, detailed-ness, and absurdity of the dreams that enveloped those few hours.

Or maybe it’s actually one of my indicators, rather welcomed lately, that my brain is slowly shutting down, meaning it’s genuinely time to go to bed. The kind of forgetfulness that comes in the minutes before you fall asleep, when you’re amusing the wakeful minutes with whatever thoughts you want and then you forget what you were thinking about. (Am I the only one who does that?)

And then maybe it’s all of the above, the most likely explanation.

Whatever it is, it’s old. Very. Old.

Just three years ago, I was cramming dozens of Bible verses and references into my brain for Bible class, who did what at any time ever in the history of church music, and the most random trivia imaginable to attempt to nail quizzes for a useless (to me) class on Rome’s history. (That class may have driven the last nail in the coffin on my fate with fibro. Maybe.) At any rate, I made it. My photographic memory was overflowing with facts and details, needed and not, all on the way to the magna cum laude diploma.

And now I can’t even remember that, yes, I have tried that family member’s certain dish (thanks to the reminder by my husband). Yes, I did say that once. Yes, I have been to that place before. Yes, I did name that cow Luther (family farm).

And I can’t even coherently pull out of my brain what it is I wanted to say.

So I’ll finish up this ramble instead, and post it. And then I’ll go back and stare at the very empty page again:

What was I going to say??

We may never know.

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. 🙂

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

This second song has become basically my life’s anthem anymore. Dying to do what I can’t and to be how I can’t be. The song is “Wild Horses” sung by Natasha Bedingfield and written by her, Andrew Marcus Frampton, and Wayne Wilkins (not to be confused with the other song by the same name about not letting them drag you away).

Again, somehow this is comforting from a fibro-sufferer’s perspective. And to someone without fibromyalgia, it gives them a brief glimpse into our life. I won’t copy all the lyrics that apply here, as I’d be copying almost the whole song; on so many levels, this song sums up the cries of my life (quoting myself, not the song):

How did I get here?

Why is this happening?

Why can’t I just do what I want, clean the house, fall asleep when I need to, go visit my best friend, run buy groceries, go out with my husband?

I see how I want to be, but I’m stuck in this prison of a body.

Why can’t I just be free??

I’ve mentioned before that I experienced fibromyalgia symptoms many years before my diagnosis. So on retrospect, I don’t see myself as ever really having been “normal.” But at least I thought I was. And as best I could tell, I was normal. Just an introverted, melancholy personality. Who had a few unexplainable quirks in the pain department. But besides all that, healthy. And compared to now, I definitely was. I used to be able to take hours-long shopping trips, buy groceries when I needed to, go to bed at night without crying more often than not, and experience activity-altering pain only about once a month in the female realm. I was free.

Now I am locked up inside my worst enemy, one that basically controls my muscles, my skin, my intestines, my thinking, and my emotions, just to name a few.

It’s very easy to look at others who are healthy and living like they’ve not a care in the world and be … saddened. Among other feelings. But then, since a lot of them have no idea what I’m living with, chances are a lot of them have their own personal struggles in any number of forms. So longing to be free like it appears others are, while easy, would be very hypocritical of me.

So I’ll settle for the symbolic realm, as my creativity is comfortable there anyway, and let Natasha put into words what I am not and what I wish I could be.

~~~~~

In case you missed Part I of my Three Fibro Anthems, go here.

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

As a songwriter, singer, and life-long music lover, I live with a song in my head, constantly. Whether I want to or not. (Usually the latter.) And as we with fibromyalgia will take what comfort we can get, with me a good bit of that is from music.

However, it seems to me that writing a song about fibromyalgia would be rather difficult. I know it’s been attempted before, including by me, but I mean a song that’s radio-worthy and broad enough to communicate the struggle without bogging down healthy, fibro-ignorant listeners with phrases like fibro-fog and crawling pain. They just wouldn’t get it.

So you won’t hear songs about fibromyalgia on the radio. (At least not anytime soon. Give me time. ;)) But in all my listening, there are a few songs, from all different genres, that have become to me what feel like personal fibromyalgia battle cries, or maybe more like laments, as fibro doesn’t exactly tend to make one feel courageous but much more often defeated. Yet, hearing these songs is, sometimes unintentionally, comforting. Like I’m letting someone else sing their guts out for me and I just get to listen and take a break from the tears.

Admittedly, these songs aren’t intended to be about fibro. One is actually a break-up song (I know, how do you get fibro out of that…) and the second is just a yearning for freedom, particularly freedom to love. The third is a worship song, amazing enough if it were made up of just the last line of the chorus. And each are so meaningful to me that I think they deserve their own individual posts.

On my hardest nights, this first song’s chorus somehow puts into words my utter emotional exhaustion. The verses of “Cry,” sung by Kelly Clarkson and written by her, Jason Halbert, and Mark Townsend, sadly don’t really apply, but the chorus arrested my ears and well makes up for the inapplicability of the rest of the lyrics. I feel like the artist sings it, as only she can, in a way that screams what my heart feels. And something about someone else so passionately singing their guts out about crying is like a sad balm. Yes, it’s weird the things that feel good when you’re dealing with depression.

Is it over yet?

Can I open my eyes?

Is this as hard as it gets?

Is this what it feels like to really cry?

So short, so simple, and yet so huge. Hoping that every flare, every storm will pass quickly, even while knowing the illness itself will only end when my life does. Hoping, like a little girl, that if you just close your eyes the storm will be past and the sun will be out again. Hoping that no storm to come will ever be as bad as this one and that you’ll be able to look back and at least know you made it through the worst part.

And hoping that this feeling—crying so violently that if you actually cried as hard as your emotions wanted you to, your body would literally break—won’t be a kind of crying that comes too often. Even if it is “what it feels like to really cry.”

And, yes, somehow hearing that sung actually does bring a sad smile to my heart. Sometimes I just have to let Kelly cry for me.

A Pile of Dirty Dishes: My Life Personified

A pile of dirty dishes. That’s all it is.

It’s not enough that the once wreck of a family room is now somehow in order, cleared of almost all unnecessary additions, the floor vacuumed. It doesn’t matter that the kitchen, hallway, and bathroom floors find themselves the cleanest they’ve been in weeks. And it doesn’t really help that all clean laundry is finally put away.

None of those accomplishments make the pile of dirty dishes any smaller or any less in need of being cleaned.

The former accomplishments are definitely that—accomplishments. Leaving my legs sore in places I had completely forgotten had muscles that could be made sore. They are tasks that had weighed on my mind for days, likely weeks, and that were spurred on to desperate completion by an unexpected impending arrival of company. It had to be done.

Now, the company gone, the house has not had time to become a wreck all over again. But as eating never seems to end, neither do the dirty dishes.

I never liked doing dishes. And I gather few people do.

But being a wife put a new perspective on that task, and I find that as much as I dislike it, I am the one who’s supposed to do them, and also the one who’s here all the time, so they must be done, of course. So when I do them, the view of a clean kitchen brings quite a pleasant feeling inside, knowing I, the wife, have done our dishes.

However, it is a known fact that dishes never really cease being dirty. Literally as soon as the last one is put away, a dirty cup appears in the sink, beginning the next mound to be tackled … later.

So, dirty dishes? A pile of them? That’s nothing new. And neither is the eventual though delayed tackled-ness of them. So where lies the problem?

Returning to the beginning: the clean family room, cleaner floors, and put-away clothes? And what they left me with? Or rather, what they took from me? There’s none of that left to conquer those dishes. So I do not stand at the sink, winning the battle one plate, one fork at a time. I rather sit here, slouched in a chair, tears running down my face, looking across the room at the enemy.

And I cry, not because the dishes are dirty. Not because they will remain dirty for who knows how much longer. And not even because I don’t want to do them.

But because I cannot do them.

Further, that it is actually not in my best interest to do them. And not only that, but because I see the piles of dishes dotting my horizon for the length of the rest of my life on earth and know that every single one of them will look just like this one. The number of personnel will change. The levels of dirtiness thereof will wax and wane. But I will not change. Every pile of dishes will look like this one: My struggle personified.

Life calls. Duty calls. Housewifeliness calls. And time after time I must tell it to wait. Because I can either answer as my mind wants to, as I feel a wife ought to, if I have enough left in me to do so, and therefore spend the next day or week in bed, completely unable to do any of the former; or I can put things on hold, say no to two-thirds of all I need or want to do, feel like a complete and utter useless bum, and let the dishes sit there. And catch a glimpse of the rest of my life, sentenced to playing a losing game.

How many people can say they have sat and cried like their heart was half-broken looking at a pile of dirty dishes? Almost laughable, the thought. Almost. Just not in my tired mind.

The Truth About Cinderella

As someone who grew up watching many Disney princess movies, I’ve discovered there is one story that is fondest in my memory.

I couldn’t really identify with Belle and her beast, though I loved her gold dress and her perfect hair. (Maybe it was all the snow—I never really liked playing in the cold.) I always got so upset when Ariel’s father destroyed all her treasures in that one scene, and Ursula was a bit scary there in the end, even if I did find it funny how she put on lipstick. And that whole dragon-fight scene in Sleeping Beauty was a  little much for my five-year-old, very sensitive mind.

Cinderella just stands out a bit in my memory, above the rest of her princess counterparts. Maybe it’s because we had slides of her story in that 3-D Viewmaster-thing. Maybe it’s because there was dancing and pretty dresses and a giant orange pumpkin.

But my adult mind has recently decided even further why; there’s more to her story than just bad luck and mean step-family members.

Here’s how I think Cinderella’s life really was.

~~~~~

Once upon a time, there was a very tired young lady named Cinderella. She lived with her step-mother and two step-sisters who were very selfish and absorbed in their own lives.

Cinderella had always suffered with fibromyalgia, and because of this, she couldn’t always go to balls like her step-sisters could and had to stay home a lot. So the three she lived with decided that Cinderella ought to be the one to keep the house clean and do all the chores—if she was always home, she might as well be the maid.

So Cinderella spent all her time cleaning, not just because she was the only one doing it, but also because she could only do so much at a time and had to take so many breaks, she could never get it all done.

When she found out about the Prince’s ball, she knew she just had to go—it was her one chance to get out of the house and meet someone who could love her and take care of her.

We all know about the fairy godmother and the pumpkin carriage and all. So she did get to go to the ball, but there was more on her mind that night than the clock striking twelve. There was so much going on at the ball—the music, people laughing and talking, the bright lights swirling around her as she danced, all while trying to focus on the Prince and the nice conversation he was trying to have with her and also attempting to act like she was okay—that by nearly midnight she was exhausted and very sad that, between her tiredness, her sensory overload, and her fibro fog, she couldn’t enjoy the evening nearly as well as she wanted to. And she was also sure all of this had caused her to make a bad impression on the Prince.

When the Prince finally came to her house looking for the owner of the slipper she had lost on her haste to leave the ball, she had little desire to try on the slipper, though she knew it was hers. She was certain that she had not made a very good impression on the Prince and that even if she somehow had, there was no way he would want to marry a girl like her once he knew what she was living with.

But the Prince had seen just enough of Cinderella at that ball to know that he wanted to marry her. And when he finally got to have her try on the glass slipper, and thus declared his feelings, she told him all about her health problems. He listened very carefully before assuring her that fibromyalgia had no influence on his feelings for her and that he would take care of her forever.

So Cinderella was rescued from her selfish step-family and married her Prince, who helped her clean and loved her every day. And they indeed lived happily ever after, even when she was tired, and in pain, and sometimes in too much fog to realize she was married to such a wonderful Prince Charming.

~~~~~

Somehow, knowing that Cinderella and I have far more in common than a love for dancing and the color orange makes me feel better, even if just for a few moments.