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.

Advertisements

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.

The Weirdness Hall of Fame

So, it’s pretty much a known fact that fibromyalgia causes pain and tiredness. Those are the main symptoms. But, as my post including 100 fibro symptoms showed, there’s far more to it than that, such as brain fog, internal issues, and depression. None of those are all that strange to hear.

But I have got me some symptoms that are just flat-out weird.

You may have heard of people who sometimes feel like there are bugs crawling on them. While I do experience the feeling of bugs on my skin that aren’t really there maybe three or four times a year, I much more often see—or think I see—bugs that aren’t really there. Sitting here typing on my laptop, I’ll think I just saw a bug dart by on the arm of our loveseat, or while I’m sitting on my bed, I’ll think I saw one out of the corner of my eye dart across the carpet. It happens a lot. I guess the only good part is that, since there usually isn’t really one there, that means I don’t have to track it down and squoosh it.

I can remember first experiencing this next problem when I was still in college, a good two years before being diagnosed. I get this feeling along the arch of my right foot that feels like there’s air blowing on it. That’s about the best explanation I can give to convey its weirdness.

Far more debilitating is what happens when a limb falls asleep. I like to sit on my legs, cross my legs, etc., a lot, but even without such help from me, I experience some part of my body falling asleep almost daily. I remember what it felt like years and years ago—it’s just briefly numb, then tingles as it wakes up. No big deal. But now, when something falls asleep, especially my leg or foot, I know I have to do one thing to keep what begins as a rather painful feeling from becoming a really painful feeling.

Hold still. Don’t move. [Groan…]

Problem is I can’t really hold perfectly still, a phenomenon I discovered when I had that MRI done last year. My muscles won’t stop twitching long enough for my foot to hold completely still until it wakes up. So if you ever see me stand up and say, “Oh no, my foot’s asleep,” and then freeze where I am for a couple of minutes with a grimace on my face like there’s a nail in my foot, you’ll know—it simply doesn’t feel at all like it does when your foot falls asleep.

In a slightly similar phenomenon, whenever I wake up, I find my hands and particularly—

Just saw a bug that wasn’t there, seriously; it was a black one. Sorry.

I was saying, I find my hands and particularly my feet, beginning about two thirds of the way down my lower leg, to be quite cold and numb-feeling. Yes, even if I wear socks. That’s a rather disturbing happening but a regular one. Haven’t given up trying to remedy it just yet.

A couple years ago, I discovered this one: the front of my scalp, roughly around the beginning of my part, will randomly feel extremely sensitive, as in no touching, generally for a few days. It’s quite painful.

My newest addition to the weird symptom list is an unaccountable, unpredictable sensation of heat from my throat down to my stomach. No, I don’t think it’s heartburn. I’ve had that. Not really burning, just heat. Is that possible to have one without the other? Kinda like Moses’s burning bush, except maybe the opposite? I thought I had found one common denominator for the happening: I had had food with garlic in it previous to the occurrence. But then it started happening without garlic, but with onions. And now it tends to happen when I’ve had neither and take a shower. Ugh.

Another rather new addition to my list, more so than the sand-papered scalp but less so than the heat with no burning, is the full-out feeling of a sunburn on the back of my neck when I am in the sun for even just a couple of seconds, literally, or when I get hot. This is one of those common fibro symptoms I’d read of but never experienced, and then it finally arrived. I knew I had a sunburn on my neck, so when I asked someone if my neck was red and they said no, it hit me. Duh—fibro. Good. Grief.

Much more serious than the fake sunburn, though, is a discovery made shortly after getting married. My husband had cleaned the bathroom while I was still in bed (as he does for me—he’s that amazing), and when I got up, he was done, so I went in the bathroom. As soon as I got in there I started feeling strange, and by the time I came out only a couple minutes later, I was about to pass out. It was an odd feeling, being on the verge of passing out with no stomach pain, which is how it happens any other time I almost pass out, thanks to fibro’s best friend IBS. Anyway, I got to the couch, where I soon recovered. And my husband immediately knew the culprit. Oh, I’m sorry—did I not mention that chemical sensitivity is another symptom? Oops. So bleach and I aren’t friends anymore, as it was in a cleaner he had used. And now it makes sense why Soft Scrub always made me feel weird when I was younger, as it has bleach in it. And also Static Guard, though for that one just chemicals and not bleach, obviously.

Finally, I’ve saved the most flat-out random, weird symptom for last. My ears do itch a lot, on the inside, which is also a symptom, but my right ear has a phenomenon all its own. It will suddenly, without warning or cause, turn bright red, as if it suddenly has a good fever, and burn like it also, to the point I’ll sometimes have to hold something cold on it to alleviate the heat. Every now and then it happens after I’ve touched it, but usually spontaneously. This also means I can’t wear earrings (and don’t have my ears pierced), as it can’t handle anything touching it. My left ear has done it a couple of times, but my right ear very faithfully does it at least once a week. Even my doctor was baffled by it, as it serendipitously happened once while I was paying him a visit.

So, never think that fibromyalgia, with all of its pain and tiredness and depression, is anything close to boring, as I never know what each minute will bring. And if you ever see me with a flaming red ear, please try to ignore the outburst, as it always calms down eventually.

A Prison Within a Prison

The other day in one of my many times of collapsing on the bed in exhaustion, something obvious my brain hadn’t yet put words to hit me. (Or maybe it had before, and I just forgot….)

There is always something wrong.

Maybe I’m crazy, but I was under the impression when I was younger that, generally speaking, the only pain a woman regularly experiences is monthly pain and the occasional stomach ache. Right? Ha—the monthly pain is just something to add to the list—just heap it on top of the rest, and within so many days, unlike the rest, it will be over for a few weeks. And at least I’ll know exactly how to handle it.

Instead, daily, hourly—constantly—if there isn’t an invisible knife in my arm, there’s one in my temple.

If the side of my hand doesn’t feel like I left it on a cold window too long, the front of my scalp feels like it’s had some sandpaper rubbed on it for a bit.

If my teeth aren’t aching from another headache that’s making my head about to explode and leaving me in tears out of sheer helplessness, the right side of chest is unaccountably hurting.

If my insides aren’t at a stand-still, making my system feel very pleasant, the front of my stomach is aching in the most indescribable not inside but not outside kind of way.

If my wrists don’t feel like I have carpel tunnel, my arms are all tight and stiff.

If I’m not weak, foggy-brained, and semi-functioning from sensory overload, I’m so tired that it’s a task to lift my arms to put on chapstick.

I could go on and on. And if I’m lucky, a handful of those are all happening at the same time, each out of the blue and with little to no apparent cause.

Then at the end of the day, or rather when I finally retreat to the bedroom, I don’t collapse into bed and find relaxation. I collapse into bed and find I am so weak you’d think I’d run in circles all day, or that my muscles are twitching with no help from me, or that my neck and shoulders are so tight there is no position that can possibly relieve them, or that relaxation is after all impossible as I cannot for the life of me will my body to relax. Or that any number of the previously mentioned problems are yet occurring.

To say nothing of my brain hosting about six or so topics at once and remembering and then forgetting all the things I’d forgotten that day and all the things I need to do the next day and the next week, in addition to hosting any growing emotional wreckage. I do not go to bed and find relief in the silent darkness. I go to bed and watch my body paint the silent darkness with feeling after feeling of discomfort, pain, and/or despair over my body.

So fibromyalgia is not just my life sentence, where I really get no days without relief. It means that though I can distract myself for a few minutes or fall into fitful, unrestful sleep for a few hours, this sporadic disease holds one guarantee: There will always be at least one something wrong. Kinda like my own prison within a prison.

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 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.