Cranky Fibro Girl

Harnessing the healing power of snark

When I Don’t Want To See

By 3 Comments

IMG_1733

This week my inner Vision got a little cloudy because I got stuck in a story that my mind was running, and so I ended up in an anxious, paralyzed, beating-myself-up kind of place.

The past three or four weeks have been really good for me. My pain’s been pretty manageable, I’ve decided what projects and goals I’d like to work on this year, and, most importantly, January has been SUNNY. But then a few days into this week my pain suddenly spiked to over 10 levels (the “official” pain scale does not have nearly enough numbers to rate fibro pain) and I freaked out because, WTF, pain?!

Pain always knocks me out of alignment, especially when it’s so unexpected. So I found myself madly scrambling around, trying to find an explanation for why I hurt so badly. And, as so often happens for me, the explanation my mind came up with was to blame myself for everything. Clearly I must have done something wrong this past month, so this pain must be all my fault. And since I had caused this pain myself, I deserved to suffer for my mistake (or so my story went).

This, unsurprisingly, only served to paralyze me in anxiety and shame, which in turn then stirred up more pain.

Luckily I talked to Lynne who reminded me to question my thinking and took me through “The Work” by Byron Katie, one of the most helpful tools I’ve learned for dealing with my monkey mind.

“The Work” is a series of questions you use to help untangle the stories that are causing you pain. Here is a sample of the dialogue I had with thoughts:

My story: This is my fault. I caused this pain. I deserve to be punished and suffer.

Is this true? YES! It is the truest thing that ever existed! Why are you even asking me this?!

Can I absolutely know that this is true? (Can I absolutely, 100% guaranteed know that I did “x”, which caused this pain?) No.

How do I feel when I think this thought? Horrible, awful, ashamed, anxious, afraid, sad, stuck. (Related questions: Is this story working for me? No, not so much. Can I think of a good reason to keep this story? Not really.)

Who would I be without this story? Free, forgiving, accepting, compassionate, kind, understanding, open, loving, creative.

Is there a story that feels as true or truer than my original story? I don’t know exactly what caused this pain flare-up.

And that’s the part that got me stuck. I HATE the randomness of this illness. I hate not being able to predict how I’ll feel in the next hour, let alone next day or next week. I hate not knowing “why”. I hate that things can be going really well, and then suddenly they’re not. So I scramble to find a reason, any reason, for why this might be happening. Because even if it means blaming myself, convincing myself that there’s some kind of explanation for my pain feels a lot better than having to accept that sometimes it happens for no other reason than the fact that I have fibromyalgia.

Which sucks. A lot. But if  I can get to this point in my thinking, I can at least stop adding mental suffering to my physical pain.  It’s not much, but I’ll take all the relief I can get.

 

For Better, For Worse, Or For Snow Days

By Leave a Comment

So yesterday we were all recovering from the Snow-Pocalypse, and all around the city there were stories of generosity, hospitality, and heroism. But sadly, I have to report that the only heroic acts taking place in our household were the superhuman efforts my husband and I were making not to kill each other. Although I don’t know if that really counts, because I’m pretty sure we already promised not to do that in our wedding vows (though not in those exact words).

I knew it was going to be a rough day pretty early on, when my husband came into the living room, looked at the conceptual sketch of someone in Seated Mountain Pose on the top of my deck of yoga cards, and said, “I don’t know what that’s supposed to be, but it looks like [graphic description of his special boy parts]. So…there went all my zen, and now I can never not see that, THANKS SO MUCH FOR RUINING YOGA FOR ME.

Then of course there was the matter of our work space. My office is the sun room, which opens off of the kitchen and, most importantly, has no door. My husband’s blatantly door-adorned office is at the other end of the house where it is warm, plus there are two big screen computer monitors, a very large table, oh, and did I forget to mention, A DOOR?! A door which, as Data would say to Tasha Yar, was “fully functional”.

So naturally, he set his computer up in the kitchen. And then there proceeded to be hours and hours and HOURS of meetings. So many meetings that there can’t possibly be any more meetings left in the entire world. All of which, apparently, could only be conducted at full volume on the speakerphone.

There’s a joke in my family that started after my brother and sister-in-law got married a few years ago. They aren’t a couple who really fight, but when they do it’s apparently conducted through what they describe as “tone”. As in, “Hm, I believe I might be hearing some tone.” So when my parents Face Timed me so that I could wish my grandmother a happy 90th (!) birthday and I was unable to unclench my jaw wide enough to form coherent words my dad said, “Oh, so it sounds like there’s been some tone there today.”

But eventually the work day ended, and we soaked in the experience of our special bonus time together by spending the entire night at opposite ends of the house.

Things have been much better today, and they opened up his office mid-morning. As he was getting ready to leave my husband turned to me and said, “You know, since I can do most of my work online or on the phone I thought about working from home again today, but I can’t get onto our office network. I think this is my computer’s way of trying to save our marriage.”

Never in life have I been so grateful for technology.

So This Is What Everyone’s Been Talking About

By 2 Comments

Yesterday we here in The City Formerly Known As Hotlanta got snow; actual snow, and not the usual 27 tiny flakes that constitute an emergency shutdown of the entire world.

IMAG2117

Naturally I grabbed my camera, eager to photograph this mysterious substance of which I’d heard so much lately. And then my stupid monkey mind woke up and started yelling at me that there was no point in trying to take pictures of anything  because it’s all been done before, and there was no way I could do anything original. Because that is the point of a hobby: to use it to beat yourself into a bloody pulp of self-declared unworthiness.

I’d like to say that I eventually  had a beautiful epiphany about my uniqueness as a person and how I couldn’t help but have a unique vision, but mostly I was just mad. So, determined to give my mind the finger, I just kept shooting until I ended up with some pictures I really liked.

Whatever works, I guess.

IMG_0962

IMG_0952

IMG_1008

IMG_1011

(P.S. For anyone who’s mocking Atlanta for what happened here yesterday, this article explains why we are not just a bunch of wimpy, skittish Southerners.)

 

 

Word Of The Year Week 4

By Leave a Comment

One of the ways that Vision has been showing up for me lately is through the element of surprise. By training myself to focus more closely and for longer periods of time on the things I am photographing, I have started to see beauty where before I only saw bareness.

IMG_0518

IMG_0572 1

IMG_0584

IMG_0549

Tentative

By 5 Comments

IMG_0816

(Mostly) pain-free days are wonderful things, especially when they come after an extended flare-up.

But ironically, they can also throw me for a loop. When I’ve been hunkered down in survival mode for weeks and months at a time, I can’t just automatically switch over to openness and enjoyment. It’s too big of a leap.

I’m afraid to trust these moments of relief and fully embody them because I don’t know how long they’re going to stick around. It’s hard to relax and stop bracing against illness, because the inevitable return of pain after finally experiencing its absence can be heartbreaking.

They give you a lot of information when you get diagnosed with a chronic illness. But they never tell you about the kind of courage you need to be in pain and chose life anyway.

Why Yes, We Were The Nerdy Kids In High School. Why Do You Ask?

By Leave a Comment

My husband gets home today from a week-long business trip to Chicago, where they’ve apparently been shipping in their weather from the outer reaches of Siberia.

“So,” I asked when I talked to him last night, “have things gotten any better? Has the temperature hit the teens yet-are you seeing any double digits?”

“Are you kidding!” he shot back. “It’s been hovering between 0 and 1 the whole time I’ve been here. It hasn’t gotten out of BINARY!”

January

By Leave a Comment

IMG_0207

January has always been a tricky month for me. For a long time, something about the old year ending and the new year beginning triggered a lot of difficult emotions and old stories for me. And then, of course,  there are the years when it seems as though the sun has gone into the Witness Protection program and will never be heard from again.

I could never see any beauty in January; everything I noticed just seemed to prove my story of doom, gloom, and depression. So I just grit my teeth, pulled out my Happy Lite, and tried to power through.

But then I picked up a camera, which forced me to focus on just what I could see in the viewfinder at that, specific moment. It reminded me to ask myself, “What is in front of me right now?” No jumping ahead into the future. No overwhelming myself by trying to figure out RIGHT THIS SECOND how I was going to survive the entire month without losing my mind.

What piece can I see right now?

What is right in front of me?

And sometimes the answer was beauty, and moments of grace.

Rain

Vision In Black And White

By Leave a Comment

IMAG1963

IMAG1968

IMAG1981

Between flare-ups, pain meds, and sheer, utter exhaustion, I stay at home a lot. A L-O-T. And I get so tired of looking at the same things over and over again that I stop seeing them, and instead see my stories about boredom and isolation and doom.

It is hard to be sick. It is boring a lot of the time. It is lonely. But I forget that it’s not like that all the time.

So I love how doing something so simple, like shooting the familiar view outside of my office through a filter, can make the familiar look new.

The Firstborns

By Leave a Comment

(originally published here on August 25, 2009). Since I’ve already admitted our “blanket situation“.

Now that we have been married for thirteen years, my husband and I have gotten pretty good at working out the different roles in our relationship. Some things I’m in charge of, some things he’s in charge of, and some things we do together. It’s pretty balanced and comfortable.

But sometimes one of us gets a little funky in some area, and the other person has to step in and have a little “come-to-Jesus” meeting with the other person.

Case in point-my husband and his relationship to our rechargeable batteries. A few years ago we started buying rechargeable batteries since we both are so enamored of electrical gadgets. But lately, for  like, oh, the last year or so, the batteries have stopped holding their charge. So we’ve been having a lot of conversations like this:

Me: “So, the rechargeable batteries are losing their charge.”

My husband: “No they’re not.”

Me: “Yes, they are. Seriously-I put them in the camera, and I can take like two pictures, and then I have to replace them again.

My husband: “The batteries are fine. They work just fine for me.”

It’s like one of those relationships where a girl is dating some scummy, lowlife guy who beats her, but she keeps on making up all these justifications for why she’s not leaving him:

“Oh, he didn’t mean it.”

“Oh, I know he loves me.”

“But I can change him.”

So last Friday  my husband got home from a business trip, and when he tried to work on his computer he saw that he needed new batteries in his mouse. And I am not kidding, he walked back and forth in front of me from the kitchen to his office THREE TIMES in the space of five minutes because, guess what? NONE OF THE BATTERIES WORKED! And as he passed me by his face dared me to say anything, which I didn’t have to, because the smug grin on my face said it all for me in that it was loudly broadcasting the message of, “SEE-I TOLD YOU SO!”

But even then he refused to admit defeat, continuing his attempts to manufacture tiny threads of hope that he could hold onto, so I had to stage an intervention.

“We are going to Fry’s this weekend, and we are buying new batteries AND a new charger!” I proclaimed.

“Oh we are, are we?” retorted my husband. But in his heart he knew that we were, because I almost never put my foot down like that, which means that when I do, he listens.

So we went, and he was all resistant and rejecting everything they sold, and I was like, “Dude-IT’S JUST BATTERIES! And we can get a charger AND a set of batteries for under twenty dollars. I don’t understand what the problem is here.”

He really didn’t have a good answer to that question, so I prevailed and we made our purchase. And so now we have two chargers plugged in in the kitchen, because apparently you can force my husband to go to the electronics store and buy new batteries, but you can’t make him use them. So now he makes a point of only using old batteries from the old charger as if to say, “I know Jenny has abandoned you, but I never will.”

It’s like these shoes he had back when we first got married. He had this pair of Docksiders which he loved, with a deep and abiding passion. Which was just fine, until the day I noticed that every time he wore them, he bled. His beloved shoes were MAIMING him, but he absolutely refused to admit what was going on.

Me: “You can’t wear those shoes anymore, because they are causing you to bleed.”

My husband: “I don’t know what you’re talking about. These shoes are just fine.”

Me: “There is blood flowing from your heels even as we speak. THEY ARE NOT FINE.”

My husband: “There is nothing wrong with these shoes. They are the best shoes ever. Go away!”

So somehow I managed to get him to throw them away, but to this day he still mourns their loss, and blames me for ruining their perfect relationship. Which I guess is just an example of tough love, when you have to step in and be the bad guy to keep a loved one from getting hurt.

And so I know that to be fair, I should include some stories now about how I am all unreasonable and in denial about things, but truly, around here it’s pretty much like, “Oh, Jenny’s being crazy again? It must be Monday. Or Tuesday. Or a day  ending in “-day”.” (See: The Having Of Fibromyalgia, And My Denial Thereof, In That I Am Not Really Sick).

But I can tell you about an area in our marriage where my husband and I are The Most Stubborn Human Beings Who Have Ever Lived.

When I was in high school my mom bought me an all-new set of bed linens, to replace the set I’d had almost since I began to sleep in a big-girl bed. The set was PEACH, to match the PEACH flowers on my wallpaper, and included a PEACH blanket. To go with all the PEACH in my PEACH room.

Well the blanket came with me when we got married, and for some reason my husband insists on referring to my CLEARLY PEACH blanket as “the pink blanket.”

For thirteen years now we’ve been having this debate, with neither side budging an inch. It’s gotten to the point now where one evening, when I was very sick and needed a blanket, I refused to ask my husband for help. Because if I asked him for the peach blanket, there was a chance he would refuse to bring it to me. And if I referred to it as the pink blanket, then he might think that he had “won”. Because we are dorks, and also, being firstborns, “I AM RIGHT. AND YOU ARE WRONG. WHY CAN’T YOU SEE THIS?!”

Don’t you wish you lived here too?