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.

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.

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.