I May Be a Bit Tired

Sometimes I just get tired. Not the I-don’t-have-any-energy tired. That’s like, me all the time. I mean the sick and tired kind of tired. The utterly weary tired.

I’m tired of needing to go to bed, almost wanting to go to bed, and refusing to because I know I’ll just stare at the walls for an hour and/or wake up every hour for the next however many and/or wake up in three hours completely unable to go back to sleep.

I’m similarly tired of wanting to go to bed but deciding not to because I know I won’t be able to get comfortable, no matter how much my closing eyes imply sleep is very near.

I’m tired of reaching dinner, having only been up 2 or 7 hours, and thinking how I probably won’t make it through the show I was going to watch at 8, as my body is already in shut-down mode, having also accomplished nothing that day.

I’m tired of twitching all night, meaning during the part that I’m asleep, to the point of almost scaring my husband, all unbeknownst to me while it is happening. Which probably has a great hand in the problem above this one.

I’m tired of jumping around between experimental supplements, having given up on prescriptions, hoping that something like Sam-e, 5 htp, B-12, or Passion Flower will somehow make me feel much, much better.

I’m tired of forgetting to take my 7 vitamins (literally) and then feeling guilty for not feeling well, mistakenly thinking if I had taken them I would actually feel good.

I’m tired of acting like everything’s okay when it’s simply not.

I’m tired of going to the doctor every so many months like someone who’s … not my age.

I’m tired of leaving things to my husband to get done because I’m too [insert tired, weak, shaky, sensory-overloaded, depressed, in tears, or as I generally feel is the cause, lazy] to do it.

I’m tired of the current state of my wreck of an “office/jewelry studio” that I don’t seem to have the physical/mental capacity to tackle anymore.

I’m tired of chest pains that really have nothing to do with my chest at all but are just the annoying locale fibro has chosen for the time being.

I’m tired of people mistakenly thinking I can just do something and get better and be back to “the old me.”

I’m tired of trying to explain my problems, shortcomings, allergies, food needs to people, inconveniencing them with things that are much more than an inconvenience to me.

I’m tired of looking my husband in the face and thinking, Yep, I’m really not here right now.

I’m tired of hitting the same wall every night, when I sit down and wonder at the fact that this. is. my. life. for the rest of my life on earth.

I’m tired of it all.

And I’m tired of being tired of it all.

That is what fibromyalgia looks like.

Who Am I Talking To? Let’s Review

This blog still seems so new to me. It was started after much consideration, with one long, carefully written post explaining why in the world I was starting a blog when there were already a bazillion all over the Internet. My reason for writing is still fresh in my mind. But I realize that my readers, on the other hand, after reading perhaps all sixteen of my agonizingly written posts, may have forgotten my purpose, or some may have come in later and missed it altogether.

As strange as it may seem, unlike your average fibro blog, mine is not being written specifically for others who suffer with this same chronic illness, though if such readers find the commonality of our struggles encouraging, this blog has gone far beyond my expectations. But my intended audience is those who do not have fibromyalgia, both my family and friends and people I’ve never met, in the quest for fostering understanding in them.

Knowing that this is an invisible illness, I decided I would have to show in words what is impossible to see in person. So I have since proceeded to dig into my long-accumulated mental recesses and attempt to put my past and current experiences into words that accurately paint the picture of my life in the most realistic, understandable, effective way possible. All of this in the effort of simply giving my readers a fuller knowledge of what I live with, so that they can better know the reasons behind so much of my life, and the lives of others who have the same illness: why I often can’t go to church, why I stay up all hours of the night and sleep all day, why I am sometimes sociable and sometimes not, why I can’t always find the right words, and much more.

So this blog is for you who know someone with fibromyalgia and think they’re just exaggerating, for you who know someone with fibro and wish to help them, for you who want to understand but don’t want to ask questions, for you who are simply curious, for you who know little and want to know more, for you who want to understand the best you possibly can while not experiencing fibromyalgia yourself. The latter is what we with fibro want but know is like asking the moon of someone.

If you care enough to read, I just want you to learn. And you can’t learn if no one bothers to teach you. And this is why I continue to try to show you glimpses of this invisible illness.

*****

I’ll expound on what to do with your knowledge in a later post.

This Window I Live Through

As humans, we want to see things for ourselves—to believe them, to understand them. Even if we can’t see something in person, we want to see pictures of it to really believe it, hence, “I’ll believe it when I see it.” That’s one reason that it’s so hard to believe invisible illnesses like fibromyalgia are really as bad as they’re cracked up to be by those who claim to have them. We can’t show you visible proof of them, unless tears count.

I wish I could somehow capture this life with fibromyalgia in a picture for you. Because, look at me and you’ll see I look quite healthy. Honestly, even I find myself looking at pictures of others who have the same or a similar illness and thinking how okay they look. Even I can’t completely weed that tendency out of myself. But you just have to take our word for it.

This lack of ability to capture fibro in visible form then leads my writer’s mind to try to describe it in the best metaphors I can possibly contrive. To capture it in comparisons that will resonate with your experiences and make you think, Oh my gosh, that must be torture to live with, and actually feel a rush of the experience itself for an instant, kind of like watching Titanic and for a brief moment almost actually feeling what Rose is experiencing.

Yet I really can’t even do that. I’ve compared fibro to a prison, in what I feel is the closest example my mind has produced. But the longer I get to know this disgusting enemy of mine, the more comparisons fill themselves out in my mind. Some of which probably do nothing but drive the illness’s bleakness and complexities home for me more than for those who I pass the comparison along to.

Nevertheless, I’ve mentioned before that there is always something wrong. But believe it or not, I actually am still human in the midst of all this, though it honestly does not feel like it. And I am realizing further why that is. While there really is always something wrong in the fibro sense, things actually do go wrong now and then in a simply human sense. Yes, I still get colds and paper cuts and hiccups. But when I know that every single one of my body systems is affected by this illness, I suddenly find that I have absolutely no sense of what is “normal” and what is the fibro living itself out. And further, what problem is “just fibro” or actually something else wrong entirely?

Is that chest pain just fibro, or is there actually something wrong in there? Is that stabbing pain in my temple that makes me gasp just the brief invisible knife that travels around my body, or the sign of something life-threatening? Is that rush of anger the medicine talking, or am I that hateful? Do I really feel as bad as I think I do, or does everyone feel this way and I’m in fact just lazy? Is it the fibro fog keeping me from being excited about a happy event, or am I really a messed-up person who can’t even get excited for people I care about? And is it the fibro fog making me feel absolutely nothing emotionally right now when anyone else would be panicking, or is there something else entirely wrong with that part of my brain?

How do I know what is “just fibro” and what is “just human”?

And in all of this, I’m finding that fibro has become so much me, and has been for such a large part of my life, that I really don’t even know who I am without it. In every area of my life. In every emotional reaction and lack thereof, am I that animated for real or am I just trying to mask my depression around others? Am I that dull for real or is it just the fibro fog? Am I even awake right now? Do I really even realize that I’m married?!

I really don’t even know if I really know what is going on anymore. Like I am a robot performing (minimal) daily tasks, without all of the real emotion that accompanies living and knowing that you are really living. Kind of like living this life through a window. A cold window in a splintered frame against a blur of laughter and darkness.

A Day Without Pain

As abnormal as fibro makes me feel, believe it or not, I do still get to enjoy all the “normal” sicknesses that plague humanity. Such as a cold. This past week I had one of the worst I’ve ever had. Understandably, I felt horrible. Fibro already tends to leave me miserable, so add a very nasty fever-causing, sore throat, aching all over, cold-sweat, shivering, roasting cold worsened by already having fibro, and I didn’t know how I was going to get through it.

So overall, my discomfort was relatively understandable. And also very temporary (after the shot and antibiotics that have become standard procedure for me, that is). Because when you have a cold, you know one day very soon you’ll wake up and be all better. Oh for the temporariness of bad things: “It will get better,” and “This too shall pass”? Not in my case.

Living with fibromyalgia is like having a life sentence with no hope of release—all in response to a verdict of innocence. Or like being held under water and knowing that you don’t get to come up for air.

I am allergic to potatoes, a discovery made a couple decades into my life.

I miss them. I want some French fries really, really bad. I know I can never eat them again, yet I wish that I could eat them just once more—to have just one day that I could order them like a normal person, instead of having the boring replacement of a salad or cole slaw. But as much as I wish I could get away with just eating them once, I know the hope is ridiculous.

Similarly, but much more seriously, I know I won’t ever wake up one day and be cured of fibro. I don’t earnestly even wish for that. I just wish I could have one day without any pain, just one day’s break to hope for or look forward to.

Even though I hate colds, boy, do I love how you know they do go away eventually. But the knowledge that there will likely never be a moment in this fibro body where I actually feel no pain is, in most moments, more than I care to imagine but impossible to escape.

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.

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.

What the Wind Has to Do with Anything

I have never seen myself as the kind of person whose life follows ordinary paths. Nor did I ever want to.

For a long while, I never wanted to get married. That plan clearly worked out well.

I never wanted to be an editor. A quick look at my resumé shows that mindset went far.

Everyone and their mother has a blog, about cooking, about photography, on traveling, on themselves—because they are, of course, the most fascinating topic there is. So of course I would never have a blog. How very unoriginal. And I have now failed at that too; why break the streak now? (But then, my title was available, which means no one else in the entire world had ever thought of such a thought. Right?)

So here I am: a married, former freelance editor—blogging. What next, a short haircut?!

However, each of those “never wills” becoming fact had very good reasons:

1) God had better plans—I met my husband when I wasn’t even trying to, and my appearance was likewise unexpected for him. We’ve been thrilled to death with the surprise ever since.

2) Money doesn’t grow on trees—I had just graduated college, and the publishing field was my only realm of occupational experience. Plus grammar and I are good friends, after all.

3) I need to speak—where people can listen if they want, ignore if they want, but either way I will have spoken. And farther than my fingertips.

Yes, my life is not what I once intended, in many positive ways. But it is also not what I intended, in what certainly feels like are less than positive ways.

I am in my early twenties, a newlywed, living in my first apartment with my absolutely incredible husband. I look completely fine, happy, and healthy. But I am not.

I cannot blame the world for assuming I am the former. The mirror would lie to me too, except the problem is I also feel the inside and know that all is not fine, happy, and healthy.

Everyone has felt the wind as it tears through the trees, swirls through leaves, sometimes merciless and unignorable, sometimes soft and almost escaping our consciousness. But certainly there.

What color is the wind? Can you see it? Can you paint it? Of course not. But it’s still clearly there, because you feel it on your face and your hands…

Fibromyalgia is invisible. I look fine. But I am far from it. You can’t see it. I can’t even see it. But, boy, do I feel it. And I am reminded every minute of every day that it is real—just as real as the wind.

Now, why am I commencing this blog instead of just venting on Facebook when the notion hits? Several reasons: I really don’t want to subject my friends to constant ups and downs of my life, my struggles therein, and my philosophical discoveries gained thereby when they’re not looking for such things, and especially when they have their own trials to deal with. Further, Facebook statuses are so short and so unsatisfying. Facebook notes are a step closer but get lost on people’s walls and ignored and are only open to Facebook friends. A blog, however, is meant to be open to anyone who cares to read and wishes to be educated and encouraged by such reading, and I feel what all is to follow can be both to far more people than the five who would read any regular Facebook notes by me.

So is this blog going to be one of those I mentioned earlier? Not just a blog, but one about myself—because I am just so fascinating? It will, I confess, contain much about me. But it will more so be an attempt to make the wind visible, so that you don’t have to just be told it exists, you can begin to see what it looks like. And to know that it is quite real.