Cranky Fibro Girl

Harnessing the healing power of snark

You Say Po-TAY-to, I Say Po-TAH-to

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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’.”

 

The Chocolate And Radish Experiment

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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.

 

 

2012: The Year Of Preparing For Awesome

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As I wrote yesterday I’m getting ready to turn 40, and so back in January I decided to approach this year a bit differently. Normally I don’t do New Year’s Resolutions, but this year I picked some specific areas of my life I wanted to focus on, and some specific goals I wanted to achieve in each of them.

One of those areas has to do with my appearance. I don’t know what happened, but somehow I missed the part of high school where you learn how to do clothes and hair and makeup. Probably I was off somewhere by myself, reading a book and writing some angsty, emo journal entries. So I sort of gave up, especially when I got sick 5 years ago.

But this year I have been feeling a bit better, and a bit stronger, with a bit more internal energy and resources, and so I’ve started to care about these things a bit more. The only problem was that it was sort of like I went to sleep for 5 years, and then woke up with this completely different body. The body of a stranger. Not my body. And I had no idea what to do.

For a long time I just hid, either in the house, or in my clothes. But a couple of months ago I decided that I’d had enough of that, and that I was finally ready to figure out how to make my outsides match my insides.

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Apparently This Dream Has Decided To Stick Around, No Matter What

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Hi, God, it’s me.

(Oh, by the way: I know that I address these thoughts of mine to many different things-
The Universe, Life, To Whom It May Concern-but you know I’m always talking to you, right?)

OK, that’s good, because I’ve got something huge that’s weighing on my mind today and I need your help.

You know that in 27 days I turn 40, and for the most part, I am thrilled.

But there’s one thing I’m kind of worried about-one thing I’m afraid might never happen. And it’s something I really, REALLY want. Like, since childhood. Since the first moment I was conscious of having desires, actually.

I want to write and publish a book. Or maybe books. And I’m so afraid that this might never happen for me.

I know I’m only 40 (well, 39 and 339 days, if we’re being precise), and that I still have lots of life ahead of me. And that some people don’t start getting published until they’re well into their 50s or 60s, and that these days there are a lot of different ways that people can publish or be published, and that I didn’t really have much worth reading or writing about until the past few years, and yada, yada, yada.

But I still worry.  A LOT.

And I wish this weren’t the case, but every time I hear about someone else publishing their book, especially if it’s someone I know, I get so jealous. It might only be for a minute or two, but holy cow-in that couple of moments, that jealously feels like it’s consuming every single piece of me.

I do not want to feel this way. And this is the way I feel.

This is not the place I want to be, this wondering-if-this-dream-will-ever-come-true, having-trouble-even-writing-anything place. And, this is the place I’m at.

Sigh.

Sometimes it hurts to want this so much that I try and force this dream to please, PLEASE, JUST GO AWAY. Or I try to trick myself into believing that, no, now that I think about it, I don’t actually want this.

The problem is that I can’t not know what I know. And what I know is that This. Is. What. I. Really. Want. Apparently this dream is sticking around, no matter what I do.

But wanting something can sometimes be so hard, especially when my mind tries to convince me that I’m running out of time. (Because, as we all know, turning 40 means you’re practically at death’s door.)

It’s not as if nothing has been happening with me and my writing; as a matter of fact, I have experienced HUGE movement over this past year. There has been a writing mentor, a writing community, and writing classes.

But there has also been an extended fallow period, with little to no writing. Although my crazy-ass monkey mind has kept itself busy spinning lots of tales, interpreting this quiet time as, “You’ll never write anything ever again,” and, “Oh, so you managed to eke out a few paltry sentences on your blog- big fat whoop-de-doo,”, and, “Everyone else is going to use up all the possible ideas that can ever be written about while you’re stuck here doing nothing, and even if you do start writing again, a blog post here and there is impossibly far away from ever writing an actual, full-length book. You’ll never be able to do that. And even if you do, it will be too late.”

Those kind of stories I could do without.

However, there have been lots of other dreams that have been coming true this year (about which, more later.) Dreams that seemed like they were in a universe so unbelievably far away that they were things I could never, ever have in this lifetime. And now they’re here.

Hm. I should probably stop and read that again. “I thought I could never have those things. And now they are here.”

Wow-looks like You’ve already started answering me on this, and I haven’t even finished writing it; at least, I have the piece I need for today. I’m excited to see where we go from here.

Thanks. I’m glad we had this little talk.

You Know You Are Two Months Away From 40 When You Get Excited About Something Like This

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So yesterday we got our driveway pressure washed, and because we are dorks old able to appreciate the little things in life, we pretty  much can’t stop talking about how amazing it looks. It’s been 5 years since we last got it cleaned, and in honor of that fact, I decided to re-run the post I wrote back then because it involves Dave, who is one of the most colorful characters we’ve ever met here in Cranky Fibro Girl Land.

“Coming Up For Air”, originally published on 6/4/07

I know I haven’t had a lot to say here lately, and that is due to the fact that I have been deep in the bowels of Being A Homeowner.

It all started so innocently back at the beginning of May when my husband uttered those four little words: “We’ve got wood rot.”

So that meant that I performed all my tutoring sessions for the rest of that month to the mellifluous background soundtrack melody of huge pieces of wood being ripped off the side of the house.

Because you know that the repairs did not stop with just the affected section. Oh no. Because that section was right next to the porch, a porch that of course became sadly shabby and run-down looking when compared to the brand spankin’, freshly painted new side of the house. So naturally we had to rip out the entire porch railing and prepare to “redo the deck”, a portentous sounding project if I ever heard one.

Apparently I then spent a lot of time beseeching the universe for Ways I Can Get Out Of Having To Do This Please!, because one day when I came home from working out, there, in my driveway, was Dave.

Dave has a wonderful voice, a voice very much like that of Mike Rowe, former opera singer and current host of the TV show “Dirty Jobs” on the Discovery Channel. I really didn’t care what Dave had to say, as long as he just kept on saying it. But then I began listening to his words.

“Behold,” said Dave, “your concrete is all black and dirty, like unto the dark heart of the blackest night. But I wilt come and wash it with my special ‘hot chemical’, and lo, it will shine like the clearest diamond and sparkle like the brightest sun.”

“Hm,” I replied.

“And verily,” continued Dave, “we also do decks.”

So we hired Dave to come and work on our house. And Dave pressure washed the house, the deck, the driveway, and all our walkways. And it was very good.

But it was also dangerous, because that was the moment that we all began Getting Ideas.

“You know,” I said to my husband, “wouldn’t it be a great idea to have your family and my family down for Memorial Day?”

“You know,” said Dave, “now that the house is clean, this is the perfect time to re-paint it.”

And so his idea and my idea met, collided, and then took on a whole life of their own.

Now that we are getting the entire house re-painted,

-Of course we have to rebuild the entire deck railing from scratch

-and re-landscape the entire front lawn

-and construct a special container on the side lawn to hold the enormous pile of gravel that’s been sitting on our driveway for an entire year (don’t ask)

-And sure, I can also prepare all of my students for their final exams in Spanish

-And host some out-of-town guests

-And easily conclude the final “tapering off” of the anti-depressant I’ve been taking for the past 14 years a mere week before we host our first ever joint family holiday gathering

Not surprisingly, my body responded to all of my insane delusions by sticking out its tongue, making a funny face, and contracting strep throat (which in turn meant receiving various helpful, yet painful, shots in the ass.)

If you listen very closely, you can still hear the quiet ticking of the Crazy Time Bomb Of Doom that I had become. Clearly, a meltdown was imminent.

The final straw occurred on the Thursday before the party when I tried, and failed, to plant three gardenia bushes in our front yard. It should give you some indication of just how completely at-the-end-of-my-ability-to-function-in-everyday-life I was that I was incapable of digging three holes in the ground, filling them with plants that had already been grown, and covering them back up with dirt.

Fortunately my husband arrived home not long after that and took over, although my hysterical wailing at first convinced him that I’d somehow accidentally lopped off one of my arms with the garden shears.

So he took over the planting, and I decided to do a few more weeks of “tapering” the meds, and the world slowly began to right itself once more.

Which was a very good thing, because the next day when he showed up to work on the house Dave motioned for me to come outside to where he was standing.

“Hi,” said Dave. “I think you have termites.”

Happily we don’t, and the party went well, and Dave has just about run out of Finding Things To Fix. I think.

You Guys, The Most Amazing Thing Just Happened!

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Yesterday I found out that I was chosen by the editors of Healthline as one of the 21 Best Fibro Blogs of 2012!!

I was so stunned when I saw it that my brain sort of shut down, so I ran into my husband’s office to get some independent confirmation. He was deeply involved in his his current computer game and without even checking to see if he was in the middle of a battle or a complicated negotiation I blurted out, “Can you stop right now and come with me?”

“Is it urgent,” he asked, and I said “YES!”  Which made him think that I was having some kind of medical emergency, so I quickly amended my request with, “I think my blog just won an award!” Which then unfortunately ratcheted down his perception of the urgency of the situation and he asked, “Well, is it something I can look at here on my computer?” and, unable to bear it any longer I yelled out, “NO! YOU HAVE TO COME LOOK AT IT ON MY COMPUTER SO YOU CAN TELL ME WHETHER OR NOT I’M IMAGINING IT!”

So he did. And I wasn’t. And then, even though my ability to form words was still fairly impaired, I called my parents. But I had a better opening planned this time so as not to scare them, so when my mom answered the phone I yelled, “I! AM! FAMOUS!” And there was much rejoicing in the land.

However: if you know me even a little bit, you will probably not be surprised to learn that even though I’ve gained some notice as someone who can entertainingly write about fibromyalgia, I am still someone who needs constant supervision as I live with fibromyalgia, which explains why, this morning, I was required to undergo The Don’t Be Stupid Today Catechism, as administered by my husband.

This is a process I must frequently undergo as I suffer from a constant disconnect between what’s going on in my body, what’s going on in my life, what my actual capacity is for doing things during the day, and what it takes to recover from activities and what I need to do to take care of myself. Or “Being Sick Amnesia”, for short.

For example, last weekend we went to the mountains to hang out with my in-laws, including my sister-in-law and Super Niece, who is now crawling, and able to sit up on her own. Mr. Cranky Fibro Girl and I made our Olympic debut as babysitters, running the full gamut of experiences from The Thrill Of Victory (feeding! storytime! entertainment!), to The Agony Of Defeat (bedtime! unmitigated disaster!)

Now, even for a regular, healthy person, it’s pretty exhausting to care for an infant. But for someone with a chronic illness it is Super-Quadruply Difficult, with Extra-Bonus Hard Sprinkles on top. So, not surprisingly, all that picking up and performing and interacting and driving triggered a pain flare-up. Plus, I somehow managed to dislocate my jaw so badly that the whole lower side of my face was swollen and inflamed. So yesterday my pain was pretty much at Level 15 all day. (Oh, crap. Speaking of which, I was supposed to take a pain pill like 4 paragraphs ago. Hang on-I’ll be right back.)

This is where the disconnect set in. Because I’m guessing that were you to find yourself in a similar situation you would respond in appropriate ways by taking some pain medicine, putting on your pajamas, and finding something fairly mindless to do while you rested on the couch. I, on the other hand, interpreted my impaired physical state as meaning that this would be a FANTASTIC time to do our weekly grocery shopping and take one of my blouses over to see if it would match the cool necklace I saw last week at Avenue.

It is thanks to this kind of behavior that my husband has learned to give me daily instructions that are excruciatingly detailed and situation-specific, so as not to leave any loopholes for me to wiggle through. So this morning’s routine went like this:

My Husband: “So how many times are you going to go to the grocery store? And how many errands are you going to run?”

Me (getting to be off duty from housework? Not a problem): “Zero.”

My Husband: “And how many times are you going to go to the bookstore?”

Me (sad sigh, since they closed our local Barnes and Noble in June): “Zero.”

My Husband: “And how many times are you going to go look at necklaces?”

Me (holding up a zero with my thumb and forefinger, to reassure him that I’m really getting this): “Zero.”

My Husband: “And how many times are you going to go to the drugstore to look for lipstick?”

Me (oh, man, I can’t believe he remembered that one) (sighing in resignation): “Zero.”

Only then was it safe for him to go to work and leave me alone for the day.

And here’s the thing: it’s not like he’s trying to deprive me of anything or take away my fun. He’s trying to help me feel better and get out of pain. He wants me to be able to do more cool things, like going to the beach with my family and Super Nephew, who apparently has only one speed-“Whirlwind”-as he zooms through his little toddler life.

Now, in my defense, it is very, very hard to deal with physical pain. Especially since, when it gets to about Level 6, you’re so overloaded that your system kind of shorts out and you temporarily lose access to your higher brain functions. So by Level 15 you’ve pretty much lost your mind. In these kinds of situations pretty much the only thing I can do is move around a bit and try whatever I can to get the pain down to a level I can actually bear when I sit down and get quiet. (Although, I suppose there could a difference between “moving around a bit” and “epic shopping excursion”. Whatever.)

Anyway, here we are halfway through this day, and I’ve done really well. Thanks to all our good work this weekend, the house is clean. Dinner’s in the frig. We have clean underwear. And I’ve even been able to do some writing. So I think I can relax, thrown on some  jammies and have an Olympics/What Not To Wear/NCIS marathon.

But before I go, I just want to thank all of you, so SO much. To know that people are reading and enjoying me, and that I’m not sending my words out into the dark abyss means more to me than you can ever know. Thank you.