One Important Answer

For some, a fibromyalgia diagnosis means answers to questions. For me, while it was that in some respects, it more so opened up questions that would now have to be answered.

I had only been dating my now-husband for a couple of months when the bad headaches and eye pain started. Then one day in particular, when I was with him, I just started crying, seemingly out of nowhere. And the only vague reason I could offer was, “I just don’t feel good….” I was aching strangely all over and just didn’t feel right anymore.

I was a little afraid that, because the problems all seemed to explode out of nowhere, he would think that I had been having these mysterious health problems for ever and just hadn’t told him (as we knew each other for a short time before we started dating), only to let it out after we were dating. But thankfully he didn’t think that.

Of course the diagnosis brought the expected questions of why in the world I had to have this, how in the world I got it to begin with, and how in the world I was supposed to live the rest of my life this way. Those are the questions that don’t have cut-and-dry answers.

But one new question needed a yes or a no, and it was for him to answer.

We had started becoming more serious about our relationship a little before I found out I had fibro, and when I discovered a website that listed all the known fibromyalgia symptoms, along with lots of descriptions, I thought it would be helpful for him to read it all. It turned out to be a turning point for him. It was more than just helpful information; it was a sobering glimpse into what a future with me could look like, and it, understandably, looked far different from what he had assumed it would be. He had to seriously acknowledge to himself the new reality and decide if he wanted to live with someone with fifty unpredictable, debilitating, life-altering symptoms. I had no choice, but he certainly did. And I wanted him to have full opportunity to be spared of it all, even if that’s not exactly what I wanted, because we both didn’t need to suffer with this.

An altered view of future life with me made him think, but that was it. And he chose me—in spite of my problems, pain, struggles, incapabilities, and unpredictableness. I did not choose fibro, but he chose it to be with me. And he has been the most understanding, most comforting, most loving person in this ever-stretching valley. Even today I honestly don’t know how I would have made it this far without him—though God clearly knew I wasn’t supposed to, as we’ve now been married 3 ½ months.

Many of the questions fibromyalgia poses may never be answered. But one huge one was: my now-husband said yes.

Advertisements

Why I Did Need a Diagnosis: At Least I Know

I don’t really know how the diagnosis itself affected me at the time. I wasn’t really surprised, as it’s not as if it came out of nowhere (or maybe the fibro fog ate my emotions that day. . .). So I can’t say that day in January 2011 when my suspicions were confirmed was particularly monumental.

I actually almost felt like I would rather not have known there was a name for my problems, because it seemed like that made me notice them much more. I had passed off random problems (as that’s what many of them were—random) for ten years as quirks or normal things that everyone went through, though many of them were severe and extremely painful.

I know a lot of people find reaching a diagnosis freeing—after years of people calling them crazy, with the pain all in their head, they can finally announce that they are quite sane and have a legitimate name for their problems. But in a way, I guess I half-wish I didn’t know I had an incurable illness. Like some delusion that if I could just go back to my ignorance of three years ago, I would feel normal again. But even back then I often felt rather foggy, for lack of a better word, and probably would have eventually sought answers, for that or any number of problems.

At any rate, on reflection, the choice to go back and erase the diagnosis, were it even a choice, would actually not be a good one for two very important reasons:

Everyone would still think I was a lazy, selfish person who can’t manage to go to bed at a decent hour, pull myself out of bed in the mornings like the rest of the world, and participate in life like a normal human being. And for a few years, I guess I agreed with them. Except, I figure a lot of people have a lazy, selfish streak in them somewhere, and I humbly, honestly don’t know that mine is all that abnormally large. So were their surmisings true, being the decently sensible, can-work-hard-when-duty-calls person that I am, you would think I would have tried harder (future blog post on that ridiculous thought). Yet the problems actually only got worse—I stayed up later and slept longer (not to be read as, slept well). And the frustrations of those around me only grew. Clearly there was a problem. Now we know what it is. And I still stay up, even later than ever. And I continue to get up, even later than ever. It’s an exhausting, restless sleep/no sleep cycle. But if I’d never found out that my so-called laziness was actually fibromyalgia . . . I’m really not sure what would have happened.

The second reason I actually did need the diagnosis—it’s only gotten worse since it started getting bad in the fall of 2010. I’ve gone from mild to severe fibromyalgia since then. Now, I realize that the severity of fibro waxes and wanes, month to month and day to day. So give me five months and I may be back down to moderate. Right?? But had I reached this level without knowing my problems had a name—and not insane laziness and lack of effort—I would no doubt be far deeper in depression than I am now. And I actually just realized that comforting fact.

So, all in all, the unmomentous diagnosis, while feeling like a label that I have to prove my legitimate humanness against, is actually freeing—not immediately, but rather in the long run. Like a whisper in the middle of unexplainable pain, or an extremely foggy day, or a night of no sleep, or a day full of it. That it’s okay because, though I’m actually not okay, at least I’m not just lazy, I’m not crazy, and not every fibro storm will always be a hurricane.

When Fibromyalgia Burst onto [My] Scene and the Bazillion Symptoms It Brought with It

I think before I commence any posts about daily life in particular with fibromyalgia, it would be helpful to my readers to know when this illness appeared in my life. I have found that relatively everyone who has been diagnosed with fibro has a very similar story in the general and a quite different story in the particulars, with all being legitimately life-changing. Herein follow my story’s particulars.

In the fall of 2010, about a month after graduating college, I began having horrible, deep, almost indescribable eye pain that I thought was caused by the hours of staring at a computer screen required by my then job, accompanied by endless, life-disrupting headaches. I soon after began noticing that when my sister’s dog jumped on me, it hurt far worse than it should, even when I was wearing jeans, and the pain would continue to throb up to a few minutes after impact. I further noticed that my arms would ache in the mornings, almost like my skin was horribly dry and tight. And I would also very often just “not feel right,” which was frequently the only way I could describe it.

After a self-diagnosis on the Internet, trips to my family doctor, eye doctor, and rheumatologist, and a terrifying MRI to make sure it wasn’t a brain problem (an experience made far worse by my condition), I was officially diagnosed with fibromyalgia.

It was when I finally saw a list of fibromyalgia symptoms that I realized how many I was actually dealing with and had just assumed were either normal or quirks I had. I realized that I had actually been living with mild fibromyalgia since I was about twelve years old and had had no idea that was the cause of so many problems, until it had suddenly come to full-blown fibromyalgia. Among the biggest discoveries was the realization that I had been dealing with depression since well before college, which became much more pronounced around the time of my diagnosis.

Thus ensued the medication game: trying a new medication to ease my symptoms for two weeks up to a couple of months for the next two years. I can’t even name all the medications I have been on, but I have been on many different kinds, from anti-depressants to muscle relaxants.

If you have ever heard of fibromyalgia, chances are you’re under the impression that it is either boloney or just back pain. Whether that’s all you know, or you never heard of it, in a nutshell, it is an incurable syndrome (meaning they don’t have a known cause or cure for it, as opposed to a disease, which has a known cause) that basically puts your entire body into overdrive. It messes up every single body system—that means your digestive system, your nerves, your brain, your skin, your muscles—everything is affected. And all of your senses and nerves respond to any kind of stimuli in a very exaggerated and abnormal way. Poke me on the arm, and I may cry, whereas a healthy person wouldn’t even flinch. That’s the nervous system in overdrive. Put me in Walmart on a busy evening, with people rushing around me and talking, ads playing, music going, air blowing past me as I walk, smells everywhere, and I will be exhausted by the sensory overload.

But it’s not just reactions to seen stimuli that’s to be dealt with. There is random, daily—hourly—pain in all kinds of forms: tingling, throbbing, stabbing, breath-taking, aching, and crawling, and even the sensation of a sunburn when none is there, all that happen without warning and without any seen reason. And without any way to soothe it. Muscle twitches and pain, headaches that envelop my entire face, aching all the way down into my eyes and my jaw and my teeth. The feeling of bugs crawling on you, your scalp aching, weird airy sensations on the arch of your foot….

Now, you may notice that a lot of these symptoms are things that everyone experiences occasionally. But the constant occurrences, the severity of each, and the combination of dozens and dozens of symptoms is what makes this far more than what healthy people deal with once in a blue moon.

Fibromyalgia sufferers also do not sleep well—their muscles won’t relax, so even though they’re lying down, their body won’t let them rest but rather twitches and tenses all night. Which means no normal REM sleep pattern. Which means when I sleep 10 hours, I feel like I slept 3. Add to that a reversed sleep cycle—that means I’m like a night owl on steroids. Not only does my brain finally start working semi-normally at night, I often can’t go to bed until some people are getting up. Then once I do go to sleep, I can hardly bring myself to get up because I’m not rested.

As I sit here trying to even think of all the symptoms I live with, I can’t even name them all, not only because there are so many, but also because another is memory problems. I noticed shortly before being diagnosed that my once quick, sharp memory was becoming startlingly dull. I couldn’t even remember conversations from the day before. And even now I constantly have to write things down to remember them, like simple things I want to talk to my husband about or things I need to do that day.

There are actually so many fibromyalgia symptoms that occur weekly, daily, and sometimes constantly, that I won’t even bother typing them all out. I’ll rather include a link to a very realistic list of 100 Symptoms of Fibromyalgia, well over half of which I live with.

One of the worst symptoms I deal with is exhaustion and lack of energy. If I want to dust and vacuum the house all in one day, and do the dishes and make dinner, I could perhaps if I happened to have a sudden burst of energy. But I would pay for it the next day and maybe beyond, as that is more than my body can handle. I have to pick one or two active things and only do them, or I shoot myself in the foot afterward. Another is what we call fibro fog—which is exactly how it sounds. It’s like you’re in a mental fog, meaning you lose your train of thought easily, you often have trouble thinking of the right word, and altogether you just don’t feel like you are really there. I call it feeling “half-alive,” and I spend most of my life feeling like this. It has honestly made some of what should be the best times of my life far from that, as I’m not really in the moment and I’m also not nearly as emotionally involved as I would be were I “fully alive.”

And that, my friends, was the surface-level history. Its deeper repercussions are what will shortly follow.

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.