Reluctant Conclusion

It’s still kind of crazy to me to think that I actually went through with starting a blog, especially one of such a personal nature. I’m not used to being so open about just about anything personal, so that tells you how much I thought this blog was needed, in spite of my more private nature, particularly for those who know me to be able to gain some substance behind the generic knowledge that I have health problems.

I remember commenting after publishing one of my first blog posts that even if this new blog of mine isn’t helping anyone else, it is certainly helping me. Comments from others soon encouraged me that some were being helped too, both fibro sufferers and non, the latter of course being my intended audience (please see my first post).

For a while I thought I was accomplishing my goal, but I’m gathering that maybe what I want to say—and what I want people to hear—is not exactly what they want to hear or what they’re indeed hearing at all.

Eighteen detailed, agonizingly written posts later, I’ve certainly learned more about myself and my life with fibromyalgia by attempting to put my experience into words, sometimes clearly but more often in a fibro fog-clouded way. But I’ve also learned some things that I wasn’t looking to and that have led me reluctantly to this final post.

• First, no matter how carefully you write something, no matter how honest you are, no matter how good your intentions or how much of your heart you pour into it, people are still going to take things and respond to them in their own way, often ways you cannot predict and possibly not very like you intended. When this is the case, though you have done everything you can to achieve the desired result, it is sometimes better if you just stop, knowing that you’re probably unintentionally doing more harm than good.

The point of This Wind-Driven Life was to show what cannot be seen. Fibro is invisible, so how are you to believe me or further know how to help unless I tell you—and show you—about it? I was not aiming to give reasons to sit and worry, to burden, or to disturb. I was aiming to give the explanations for anything I do that’s not “normal” in the sense of a healthy person. Why I don’t always want to be sociable, why I sleep such odd hours, why I even claim all these things to be wrong with me when I look perfectly fine—to fill in mental gaps on the illness for people afraid to ask, and to make real to others what obviously can’t be seen simply because of the unseen nature of this chronic illness.

• Second, no matter how well-known the legitimate problem of depression has become in recent years (kind of like fibro), there will still be people who automatically equate “darkness” and deep, sad emotion with full-blown medical depression and, even further, with not knowing Jesus and the hope He gives.

It is actually possible to be deeply discouraged about something, often with more reasons out of one’s control surrounding the problem than meet the eye. All words of sadness and weariness do not suddenly equal medical depression. I would be one to know the difference.

That said, I have shared in my brief About Me page that I am a melancholy, introverted writer. Introverts are born thinkers—they are constantly reflecting on things as opposed to openly talking about them. Add the melancholy temperament to that, plus my artistic side of creative writing, and you’ve got someone who by mere nature leans toward more dramatic, specific, emotional word choices. My blog posts are completely honest, but they are, simply by my nature, not going to be covered in flowers and sunshine while portraying a less-than-happy topic of fibromyalgia.

Further, being downtrodden, depressed, or sad about life’s circumstances, whether the cause is mere human discouragement or actually clinical or situational depression, is not an indicator in itself that one is not a Christian. Even Elijah ran off into the wilderness, collapsed under a tree, and begged the Lord to just take him (I Kings 19:4). There are tons of psalms written about being downcast, downtrodden, covering your bed in tears, and weeping all night. And even Jesus, on His way to do His Father’s will, implored His Father not once but twice to spare Him of having to be tortured and murdered on the cross (Matthew 26:39, 42). If Jesus Himself, in His part humanness, was sorrowful and depressed about what He was experiencing and about to face, then it should be no surprise at all for a Christian, who is obviously only human, to deal with depression over a chronic illness.

Being a Christian does not remove the trials we face or even sorrow in response to them—it gets us through them. And enables us to write about them, even if it’s painful to do so.

• Finally, it was asking too much to expect people who don’t have fibromyalgia to get it like I want them to.

Simply put, I can’t expect people who don’t suffer from fibromyalgia to be able to handle it in theory, because they haven’t handled it in reality. No matter how well I put it into words that I think will do the trick. And unless they experience it themselves, they simply are not capable of getting it and may not even want to try.

I have by no means exhausted post topics for this blog. I keep a running list of areas to write on as they hit me. So, I could just keep publishing this blog and letting people continue to read or not read as they wish. But the chance of doing more damage than good—to them and also to their view of me—is not a risk I wish to continue to take—burdening people with information that was meant to educate them and make all of our lives a bit easier, giving people self-interpreted reason to label my kind of depression as lack of real Hope, and expecting what is painfully the impossible of people who cannot understand. I am sorry for quite unintentionally causing the first two and expecting the latter. Even if the posts were helping me, that is not worth doing the opposite to others. It may now be too late, but there is no sense in letting it continue.

So it is, as the title suggests, with reluctance and after much consideration that I cease publishing this blog. Thank you to those who read my posts and now get my life with fibro a little bit better, and especially to those of you I’ve never even met who have been helped and encouraged—and also encouraged me. I trust this whole undertaking was not entirely in vain, for me but also for some of those I wrote for. I hope you have at least caught a few helpful glimpses of the invisible.

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.

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.

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.

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.

Help—Someone Stole My Internal Clock

So, guess what time it is. I’ll give you a hint: it’s dark outside. All I hear is the ticking of the clock here in the family room, a few tractor trailers going by and hitting the rumble strips on the nearby bridge, and the sound of these keys clicking as I type. The baby in the apartment below isn’t even crying right now (though time is certainly not in charge of those outbursts) but is sleeping like the rest of the world. No, the late night shows didn’t just go off. The early morning shows are actually starting about now, though I never watch them.

It’s 5:16 AM. And I didn’t just get up.

It’s funny (not really) how some rare nights I collapse into bed at midnight like a normal person. Sometimes it’s because I did one or two too many things that day and will pay for it the next. Or maybe there’s no obvious reason at all for me to be tired, like when I’ve only been up for about six hours. That’s a favorite of mine. In both cases, you never know when I’ll wake up, or rather actually get up, as I generally awake umpteen times during the night—or I mean, during the time I attempt to sleep.

But then most of the time, the world goes to bed, and I sit down and twiddle my thumbs at the computer, playing Angry Birds (I know, seriously?), making jewelry, writing songs, sending emails, finding gluten-free recipes on Pinterest, or occasionally doing the dishes. I twiddle for anywhere from three to six hours and finally get my husband’s lunch ready for him and go to bed. And then I usually lay there for a good hour or more, until after his alarm goes off a time or two or three and he gets up, takes a shower, and gets ready. Soon I hear him leave and lock the door, at which point I finally fall asleep well after the sun has begun to appear, turning the blinds that should be quite dark an annoying shade of morning. Good night, morning.

What’s even more fun is that you’d think those nights I go to bed “early” (midnight), I would then get up a decent eight or nine hours later. But actually, sometimes I end up having to get up, either from unignorable wakefulness or insufferable dreams, just about three or four hours later. Or, more often, I sleep something like fifteen hours and get up just before my husband gets home from work.

I’ve always been a night owl. I remember the thrill (yes, I’d say at the time it was a thrill) of staying up until, say, 10:30 at night reading kids’ books when I was like nine years old. That might have happened three times. Then by the time I was fourteen, I would stay up and write, in bed, until 11:30 or midnight or 1:00 AM. I thought that was late.

By the time I was in my late teens, I was staying up until 3:00 and 4:00 AM. There for a while, I thought I was just a night owl. But it didn’t make sense for it to just get later and later like that, as I would then have to sleep later and later. (This all went over really well with my family, by the way.)

By the time of my fibromyalgia diagnosis, the late nights were not shortening, and when I finally went to bed one morning to the sound of my dad getting up to get ready for work, I was a bit disturbed. This was crazy.

Turns out, one of the five bazillion symptoms of fibro is a reversed sleep cycle, which means wakefulness and best brain energy (key word, best) at night, when you should be in bed. But that then smashes up against another problem: unrefreshing sleep (we don’t go into the deepest level of sleep, we wake up a lot, dream a lot, etc.), which means we practically can’t wake up.

Now there is really no time that’s off-limits for me to be awake during and no time off-limits for me to be asleep. I used to feel bad, almost guilty, like I was doing something wrong when I would stay up until 1:00 … then 4:00 … then 7:00. But there must be something about 8:00 AM, because when I reached it, the numbers quit bothering me like that for some reason, almost like they lost significance to me. Like, I’ve done it—I’ve finally stayed up all night long, until all the world is up and running. My body officially has no timepiece it lives by, and they’re all just numbers to me now.

Now, what to do about all of this, I have no idea. The best solution I can think of is a sleep medicine besides Melatonin and muscle relaxants, which I’ve tried. However, that solution bothers me, as I want to fix the problem that’s making me not get refreshing sleep, which I feel is at least one of the main culprits in many of my problems, instead of just treating the symptom. But maybe I’m living in a dream world. At any rate, the problem is at the top of my list for when I go to the doctor next.

Meanwhile, this complete nonexistence of an internal clock grew to bother me so much, that I finally took the topic to a popular fibromyalgia page on Facebook recently, simply wanting to know if anyone else with fibro was severely dealing with this aspect. I knew the admin of the page often took questions others posted and reposted them as a regular status, gaining many, many more views and responses in the process. So I posted:

The admin did soon repost it, and I could not believe the responses:

Forget what the people suggested in their comments—almost a thousand people liked it?! (Which in my book is a quick way to say yes.) Here I am, in the middle of this ridiculous, helpless, sleep/no sleep nightmare, wondering if maybe I’m just not trying to go to sleep, or maybe I’m just not trying to get up, and I see this. Somehow I don’t think a couple thousand people are fed up enough with this aspect of fibro to bother finding a fibro page on facebook and participating, sharing that they deal with it too, what they’ve taken for it, what they’ve tried, and how they thought they were the only one, while being too lazy to try to do anything about it.

We’re all in the same boat.

And with that jaw-dropping discovery, I feel vindicated. The proof from the response is more powerful than the responses themselves. I read as many as I could, like comments about sleep number beds and drugs I’ve never heard of; none of us has an answer or a cure for this problem.

But somehow knowing that as I sit here, the clock ticking, the trucks going by, the morning now here, I’m in the company of several hundred other sleepless people, I suddenly feel . . . a lot less alone, even if just in this one struggle.

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.