As I sat down yesterday to see if I could think of something to post about here, Cranky Fibro Girl suddenly appeared in front of me, striding briskly out of a glittering cloud of smoke. (She does love to make an entrance.)

“Hi Cranky Fibro Girl,” I said. “You’re looking well.”

“Why thank you,” she cooed, twirling in a small circle. “I’m trying out a new shade of lipstick. Like it?” She pursed her lips in an exaggerated pout.

“Nice,” I agree. “Fiery Red definitely suits you.”

“So,” she began, all business now,” Why’d you call this little meeting? What can I do for you?”

“We-ll,” I replied, drawing out the word as I attempted to gather my thoughts which, on this day, was a lot like trying to herd cats. “I was hoping you had an idea for what I should write about next. I’m feeling a little stuck.”

“Ooh, that’s no fun,” she agreed, then did a double take as she actually focused on me. “Oh, wow-I can see why you’re having trouble. You look like sh*t.”

“Oh, thank you so much,” I snapped. “That’s so helpful.”

“Whoa, no,” she protested, throwing up both hands to ward me off. “I just meant I can understand why you’re stuck because you look like you’re feeling awful.”

“You got that right.” I smiled weakly to show that there were no hard feelings. “I’m in one of those patches where this stupid illness feels like a marathon that is never EVER going to end.”

“So why don’t you write about that?”

“Because I can’t think of any new way to say that I feel awful and that there doesn’t appear to be any relief in sight. And I don’t want to depress people, or bore them, or make them worry that I’m suicidal or anything.”

“Does it need to be said in a “new” way? she asked. “I mean, it is how you feel, and one of the reasons that people come to your blog is that you ‘tell it like it is’ when it comes to having fibromyalgia. Are people really looking for something shiny and different? Maybe they’re in a marathon too, and just want some reassurance that they’re not alone in this, and that there’s someone else who really gets what they’re going through.”

“That’s a good point,” I replied “and that definitely takes the pressure off of me-even though I’m the one who put it there in the first place. Thanks!”

“My pleasure. I’d stay and chat some more, but I have a mani-pedi in ten minutes and I don’t want to be late. Ta!”

She disappeared with a glittery pop before I had the chance to thank her, but I knew she’d get the message when she read this post.

Now, if you’ll excuse me, I’ve got a hot date with my pain meds, my jammies, my iPad, and my couch. And if you’re running your own marathon today, may you too find the support you need to help carry you through this next long stretch.

You are not alone.

This totally sucks.

I really do get it.

 

Because my Inner Nerd just isn’t happy unless I’m taking some kind of class, I’m currently enrolled in an online class by Ronna Detrick called “Soulstice“. In it, she guides you in working through various stories of women in the Bible, and the story I’m currently studying is the Old Testament story of Hannah, one of whose themes is that of Longing. Hannah desperately wants a child, but has spent years and years unable to conceive. And while I don’t long for children, I am quite familiar with this flavor of desperation-tinged wanting.

Because I am just so tired of being sick. I hate this fibromyalgia, and I desperately long to be free; free of pain, free of exhaustion, free of having to live my life through the filter of illness.

I long to wake up in the morning without being in pain from the moment I open my eyes ’til the moment I fall asleep at night. I long for a day that doesn’t involve pushing against the Sisyphean boulder of chronic pain and exhaustion, trying to get things done, but knowing that it’s only a matter of time before it overpowers me, and then steamrolls me flat on its way back down the mountain of my day.

I long for the energy and capacity of healthy people. I long for a time when picking out an outfit and getting dressed does not feel like having to climb Mt. Everest. I just want to feel better.

But I know that for right now, as well as for the foreseeable future, I can’t have any of this.

I want, and the answer is no. And I know I’m not the only one. I know you’ve been here too.

We want. And sometimes the answer is no. And That. SERIOUSLY. sucks.

I really wish I had some zippy punchline to end with, but I don’t. But I do think I can offer us at least a tiny bit of hope.

Because  somehow, we do still get up every morning. We do find a way through our days. We do experience moments of relief, of happiness, of contentment, and we do survive the awful. And I think this could only happen if, as we’re rolling that stone up the mountain, we occasionally stumble into a pocket or two of grace.

So let me wish for us, my friends: may these oases of grace and comfort run deeper and wider, and occur more frequently that we ever could have dreamed possible.

And you know what? I’m pretty sure the answer to that wish is most definitely, “Yes!”

 

 

Yesterday after 5 years I finally got a new CPAP machine, and the difference between the one I’ve been using and the one I just got is like the difference between trying to communicate with someone by chiseling out your message on stone tablets, and communicating with them by telepathically poofing your thought directly into their brain.

Today I am feeling down. I’ve reached the point where I’ve been in so much pain for so long that I have run out of words. There just aren’t any more ways that I can think of to say, “I hurt. I am weary. Just putting on pants feels like climbing Mt. Everest. Dear fibromyalgia: YOU SUCK GIANT DONKEY BALLS.” Well, OK-that last one never gets old.

I’ll let Rob Thomas’ song, “Her Diamonds” speak for me today. He wrote it for his wife, who’s also suffered with chronic illness.

Oh what the hell she said
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doing
Like I don’t know now

By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then i do too
So I let her be

And she says oh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now
She’s down in it
She tried her best but now she can’t win it
Hard to see them on the ground
Her diamonds falling down

Today is a day for me to go back to basics.

Today my question is, “How can I help myself feel a little bit more comfortable?”, not, “What can I clear off of my To Do list?”

Today I  need to ask, “What would feel soft, and gentle, and soothing?” instead of “How many words can I write?”

Today I revert to my “default” settings; the activities I can actually manage when I hit bottom. For me that is pain medicine, jammies, the couch, TV, mystery novels, and a cold drink.

Today I declare that this is enough.

The other day I was talking with a friend of mine who also suffers with a chronic illness, and we got to talking about our different medications. Her illness requires her to take courses of a pretty heavy-duty antibiotic, which she admitted can be really rough on her system.

“But on the bright side,” she said, cheerful and positive as she always is, “I never have to worry about getting leprosy.”

Yesterday I had my weekly session with Lynne, and when I got around to describing my current physical symptoms I told her that I was experiencing some fibro fog.

“The other day I couldn’t remember my home phone number even though I’ve been dialing it for 13 years, and it really freaked me out,” I said.

“Hm,” she replied.

“Although I am still able to name all of the children on 19 Kids And Counting.”

“Mm hm,” she said. “Plus, I already have an entire page of notes written down, because you haven’t stopped talking once in the past 35 minutes.”

“Wow,” I said, glancing at my clock in surprise.

“When I work with clients who are experiencing fibro fog, they can’t even put together an entire sentence,” she explained.

“Well, I’m not having that problem,” I agreed.

“I know,” she said. “Your version of ‘fibro fog’ is other people’s version of ‘being on crack’.”

 

A few months ago my Partner-In-Crime, Lynne, told me about a study detailing the Chocolate And Radish Experiment (carried out by Roy Baumeister, Ellen Bratslavsky, Mark Muraven, and Dianne Tice), in which a group of  researchers set about exploring a person’s capacity for willpower and self-control by pushing those abilities to their limits.

This was interesting to me because, as a chronic pain patient, I need a level of willpower I never could’ve dreamed was possible just so I can bear living each day with unbearable, debilitating pain. As a matter of fact, my fellow sufferers and I have pretty much elevated willpower into our own personal Super Power.

I need willpower to help me get up and face the day, even when I’ve woken up to day number 847,000 of my current pain cycle.

I need willpower to help me continue to take my meds, exercise, stretch, meditate, take a hot bath, lay on an icepack, track my symptoms, do some EFT, increase my Lyrica, decrease my Lyrica, go to the chiropractor,  and all the other things I do to support my body, even when none of them seems to be doing a damn bit of good.

I need willpower to help me stay on the couch, breathing in and out, when all I really want to do is run shrieking down the street, tearing off my clothes and ripping out my hair, and then throw myself in front of a bus.

I need willpower to challenge the thinking of my Pain Brain, which attacks me at my lowest and most vulnerable to shriek at me that I am just a burden, a weakling who doesn’t contribute anything at all to my life or the life of those around me.

And, ironically, willpower is what I need in order to finally surrender my bracing-against, “I-will-bend-you-to-my-will!”, pushing against my pain (which makes it a billion times worse), so I can relax a bit and get a touch of ease and relief.

However-and unfortunately, this is something that we sufferers are EVEN MORE familiar with-eventually, willpower gives out. That’s what these researchers wanted to explore: what is involved in exercising and sustaining willpower, and what happens when willpower runs out.

“In the first part of the trial, Baumeister kept the 67 study participants in a room that smelled of freshly baked chocolate cookies and then teased them further by showing them the actual treats alongside other chocolate-flavored confections. While some did get to indulge their sweet tooth, the subjects in the experimental condition, whose resolves were being tested, were asked to eat radishes instead. And they weren’t happy about it. As the scientists noted in their Journal of Personality and Social Psychology paper two years later (PDF), many of the radish-eaters “exhibit[ed] clear interest in the chocolates, to the point of looking longingly at the chocolate display and in a few cases even picking up the cookies to sniff at them.

…After the food bait-and-switch, Baumeister’s team gave the participants a second, supposedly unrelated exercise, a persistence-testing puzzle. The effect of the manipulation was immediate and undeniable. Those who ate radishes made far fewer attempts and devoted less than half the time solving the puzzle compared to the chocolate-eating participants and a control group that only joined this latter phase of the study. In other words, those who had to resist the sweets and force themselves to eat pungent vegetables could no longer find the will to fully engage in another torturous task. They were already too tired.” (Emphasis mine.)

This is pretty much the essence of what it is like to live with a chronic illness.

But please know that I am absolutely not saying that we’re the only people who feel pain or experience stress-not at all. Holy cow-we all have to eat radishes, all the time.

It’s just that when you live in such a constantly impaired state, this process and its affects are exaggerated to the most extreme degree possible. And you rarely ever get any relief, or at least, not enough to ever really be able to replenish yourself. Plus there’s the added discouragement of having nothing external to show for all the superhuman effort you’ve put forth in surviving days upon weeks upon months in unrelenting pain. It’s not like we  ever win a gold medal in the Holding Your Shit Together Olympics. (Although we TOTALLY should. We can teach the world a thing or two about marathons and other Olympian Feats.)

Plus, there’s the fact that one of the causes/effects (of fibromyalgia, at least) is that you spend your nights experiencing what is laughingly called “non-restorative” sleep. Which means that the things that is supposed to help us heal is just another agony to be endured (EVEN IN SLEEP, THE RADISHES FIND US.)

I know that this is kind of a bummer of a post (YOU’RE WELCOME!), but it will not surprise you to learn that I’ve been in a pain cycle that’s lasted for almost 3 months now. This sucks enormous donkey balls for many reasons, but one of the worst is that when I’ve been so strung out for so many days in a row, some of the metaphorical chocolate chip cookies I use to help myself feel a bit more comfortable start to turn into things that feel like radishes instead. Even my snark-my saving grace-runs out (damn you, fibromyalgia.) (See-I’m too exhausted to even rant in capital letters anymore.)

So pretty much the only thing I’m up for doing these days is sitting on the couch and watching reality TV on TLC and the Discovery Channel (last night: “How Booze Built America”). And there have been lovely chocolate chip cookie stand-ins like Coca-Cola and regular M&M’S, and I have finally figured out the combination of meds I need in order to get some sustained relief from this pain. Not to mention the fact that I’ve been able to write again the past week or two. So life is looking better by the minute.

In an ideal world I would have something insightful and lightly humorous to conclude with here, but all I’ve got right now is a Pain Brain that is trying to convince me that this piece is totally stupid and dumb and not worth posting, so I’m going to hit publish really fast and then go learn about rum and the American Revolution. (Rum? Or whiskey, maybe? Clearly I need the wisdom this show is offering.)

And in case you’re in the middle of running your own marathon today, for whatever reason, this is me handing you a cup of water (or rum), and cheering you on as you pass by.