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.

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.

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.