All My Fault Even When It’s Not

I don’t think I’ll ever understand the rather common phenomenon of people taking any negative happening that involves them in some way and twisting out a reasoning that involves their being the one at fault.

I am sure there is some psychological explanation that leads people to do this. But I’m content to go with the thought that they care so much about the people in their lives that they automatically want to take the blame for everything. Even when it doesn’t make sense at all. I sometimes have this tendency myself, at least inwardly, and have a husband who has a very strong tendency toward it, so I’m getting used to trying to combat it when it is probably well-meant but completely irrational.

For some reason, feeling guilty is an easily come-by feeling, in so many areas, chronic illnesses included. And I don’t just mean guilt over the dishes piling up for a few days. (Gasp, I know.)

It is extremely difficult to articulate exactly what fibromyalgia feels like physically. A lot of people compare it to the flu that never goes away, for lack of a better common experience with healthy people—a terribly wanting analogy in my book. But it is just as hard, if not harder, to articulate exactly what fibromyalgia feels like emotionally. There’s a double thrust of steady artillery flying at the emotions, each vying for attention and exacerbating the conflict by the others’ presence.

Life like this stinks. It leaves you upset, disappointed, and unsatisfied and feeling unaccomplished, unhelpful, quite a failure, and definitely less than human.

But as if the unignorable stabs of all of that aren’t enough, there’s the more subtle but equally crippling feeling that I have recently discovered thriving in the back of this over-stimulated, exhausted mind: guilt.

How silly—it’s an unexplained chronic illness with no cure, no certain cause but only guesses, all of which are not my fault. And also knowing I’ve dealt with levels of this since I was about twelve settles the fact: I surely did not cause myself to have this. I didn’t drop the ball on life, not exercise enough, not eat well enough, spiral myself into depression, or grasp at straws for pity and attention. Fibromyalgia chose me; I did not choose it.

So why do I even begin to feel like I’m to blame for my life being like this? The fact that I know my having all of these problems not only inconveniences family and friends but confuses them, burdens them, saddens them, and worries them. Especially my husband, obviously. I know he understands. I know it doesn’t make him upset with me or disappointed in me because he knows it’s not my fault and I don’t exactly have control over what I can and can’t do each day.

But honestly, I figure it’s a lot to ask to expect people to never, ever get annoyed when I have to put off talking to a good friend on the phone for a few days because I couldn’t get out of bed in time to call her, when I don’t even want to think about fixing dinner and ask my husband if he could just pick up something, when I miss a month or more of Sunday morning services because my sleep cycle is so out of order, or when I finally fall asleep just after hearing my husband leave for work in the morning, the birds chirping (a.k.a. screaming to a non-morning person) and the rest of the world up and living like you’re supposed to.

And yet, even though no one has chewed me out for these things or really implied frustration with me, I assume they must be feeling that way at some point or another. I feel like it’s my own stupid fault, even if I didn’t cause the illness after all, for not trying harder or something. Maybe I am a lazy bum. Maybe it is all my fault for all my social and house-cleaning shortcomings.

Even though I know thousands of other people feel just like me, the guilt is still there, intangibly, hauntingly, so evenly spread over my unpredictable emotions that even I am sometimes fooled.

So what do I do about it? Well, when my husband starts the irrational guilt thing, I lovingly but firmly tell him to stop. It’s completely irrational, and he sees that.

Now if someone could just get into this brain, give it a good shake, and show it how completely irrational it’s being, maybe it would see that and shut up. And then maybe I could start trying to deflect just one line of fire, instead of two.

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.

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.

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.