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.

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.

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.

A Pile of Dirty Dishes: My Life Personified

A pile of dirty dishes. That’s all it is.

It’s not enough that the once wreck of a family room is now somehow in order, cleared of almost all unnecessary additions, the floor vacuumed. It doesn’t matter that the kitchen, hallway, and bathroom floors find themselves the cleanest they’ve been in weeks. And it doesn’t really help that all clean laundry is finally put away.

None of those accomplishments make the pile of dirty dishes any smaller or any less in need of being cleaned.

The former accomplishments are definitely that—accomplishments. Leaving my legs sore in places I had completely forgotten had muscles that could be made sore. They are tasks that had weighed on my mind for days, likely weeks, and that were spurred on to desperate completion by an unexpected impending arrival of company. It had to be done.

Now, the company gone, the house has not had time to become a wreck all over again. But as eating never seems to end, neither do the dirty dishes.

I never liked doing dishes. And I gather few people do.

But being a wife put a new perspective on that task, and I find that as much as I dislike it, I am the one who’s supposed to do them, and also the one who’s here all the time, so they must be done, of course. So when I do them, the view of a clean kitchen brings quite a pleasant feeling inside, knowing I, the wife, have done our dishes.

However, it is a known fact that dishes never really cease being dirty. Literally as soon as the last one is put away, a dirty cup appears in the sink, beginning the next mound to be tackled … later.

So, dirty dishes? A pile of them? That’s nothing new. And neither is the eventual though delayed tackled-ness of them. So where lies the problem?

Returning to the beginning: the clean family room, cleaner floors, and put-away clothes? And what they left me with? Or rather, what they took from me? There’s none of that left to conquer those dishes. So I do not stand at the sink, winning the battle one plate, one fork at a time. I rather sit here, slouched in a chair, tears running down my face, looking across the room at the enemy.

And I cry, not because the dishes are dirty. Not because they will remain dirty for who knows how much longer. And not even because I don’t want to do them.

But because I cannot do them.

Further, that it is actually not in my best interest to do them. And not only that, but because I see the piles of dishes dotting my horizon for the length of the rest of my life on earth and know that every single one of them will look just like this one. The number of personnel will change. The levels of dirtiness thereof will wax and wane. But I will not change. Every pile of dishes will look like this one: My struggle personified.

Life calls. Duty calls. Housewifeliness calls. And time after time I must tell it to wait. Because I can either answer as my mind wants to, as I feel a wife ought to, if I have enough left in me to do so, and therefore spend the next day or week in bed, completely unable to do any of the former; or I can put things on hold, say no to two-thirds of all I need or want to do, feel like a complete and utter useless bum, and let the dishes sit there. And catch a glimpse of the rest of my life, sentenced to playing a losing game.

How many people can say they have sat and cried like their heart was half-broken looking at a pile of dirty dishes? Almost laughable, the thought. Almost. Just not in my tired mind.