Cranky Fibro Girl

Harnessing the healing power of snark

Tentative

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(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.

Vision In Black And White

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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.

A Shift In Perspective

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Sometimes the circumstances of my illness make my life feel very claustrophobic. It’s hard not to get stuck in thinking that I am only my body, only this pain, only a chronic illness patient. When the pain gets really bad and I’m taking  lots of meds and can’t go anywhere, the cabin fever and boredom can make me feel crazy.

So I’m very grateful for everything that reminds me that I can always shift my vision and focus on something new, even while acknowledging the truth of how sick I am.

Conspircacy

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We are currently in an extended stretch of gloomy weather  here which we normally don’t experience until January, and I am having a hard time dealing with it.

“The whole summer was like this too,” I complained to my husband. “It’s like nature wants me to be depressed.”

“I don’t think so,” he said. “I think nature wants things to be moist; it’s the moisture delivery system that’s depressing you.”

(This does not make me feel any more kindly toward nature. It still feels personal.)

And the weather is not the only thing trying to break me. I’ve spent the past two months in such an endless cycle of chronic migraines and fibromyalgia pain that I have officially become the “ScrInch” who dreads Christmas.

The world has much to answer for these days.

I Really Wish I Could Cut Myself Some Slack

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You’d think that after 5 years I would have gotten the fact that I can’t bend this fibromyalgia thing to my will, but apparently my mind didn’t get that memo. Actually, it probably did get the memo, and then gave it the finger and yelled, “Maybe no one else has been able to wrest control away from this disease but it will be different for me, because never before has it faced willpower of this strength and magnitude, mwah ha ha ha ha!” (And I’m sure you can just imagine how well that‘s going.)

I’ve been pretty sick these past couple of months so I’ve been stuck in Pain Brain, which pretty much takes up ALL THE SPACE! Plus, not surprisingly, there’s not a whole lot of humor around when you are smack dab in the red hot center of suffering. So it’s been really hard for me to write.

But despite all of this, I continually beat myself up about this blog and how I’m not posting much here (because of course the whole point of this blog is to be yet another tool of punishment and self-flagellation. Oy.)

Sometimes I’m able to challenge all the little thought gremlins and stories that have attached themselves like crusty barnacles to the ship of my writing:

-I’m not trying to make money with this blog. It’s not my business, so I’m not losing money or work by not posting on some sort of “regular schedule” (whatever that means).

-No one has ever said to me, “Hey! Where the [bleep] is your next blog post?! You’re not posting enough-I’m leaving!” (And thank you all very much for that.)

-Many people who read my blog are also sick, so they understand about having a limited capacity for doing things and that you’re always having to chose what to spend your reserves on, and what to let go.

-Plus, they probably appreciate not being inundated with blog posts all the time. I know I’ve unsubscribed from people because they sent out so many things that it was impossible to actually read any of them.

-I’m certainly not going to forget how to write.

-Nor am I going to miss stories or run out of material. I have files and notebooks full of ideas, and my experiences are always with me, as a part of me. They’re not going anywhere.

(Hm. I seem to have created a bit of space where I can breathe now, and maybe even make up some stories that feel good. Perhaps I can get my storyteller to work with, rather than against me.)

But I do have something fun to report. This month I’ve been taking a course called Be Your Own Beloved with Vivienne McMaster . which she describes as ” a 28 day photo adventure designed to cultivate self-compassion through the practice of taking self-portraits.”

There is a whole novel’s worth of posts in here about how this is helping to heal my relationship with my body, but those are for another day. However in addition to that I’m also learning how I can tell a story in pictures, which is great for the days when I don’t seem to have any words. So that’s what inspired the 2 previous picture posts, which were taken in response to the prompts of “The Truth Of Today”, and “Rest”.

I’m still feeling pretty crappy today, so I’ll leave you with today’s photo, which was all about being open to signs of love around you. Thank you all so much for being here 🙂

Being Open To Signs Of Love

 

I Don’t Know Why

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I don’t know why I developed fibromyalgia.

It took me about 2 or 3 years to completely stop believing that somehow it was my own fault, that I’d done something wrong, or not done something right, and therefore made myself sick. That was one possible explanation I was glad to discount.

Sometimes I see glistening, spider-web wisps of possibilities: decades of sleep impaired by insomnia and sleep apnea. Genetic inheritance. A delayed consequence of having mono as a teenager. Trauma. Maybe related to my double diagnosis of bipolar disorder and borderline personality disorder. But no one really knows.

Then there are the more “cosmic” explanations, possibilities from the “Why are we on this earth in the first place?” level of life.

Sometimes it feels like shit just happens. Sometimes it feels as though life is trying to break me. Sometimes it seems as though the only meaning in this experience comes from the meaning I choose to give it.

But sometimes, unexpectedly, my soul whispers to me that it’s OK; this is all a part of our journey.

(At times that thought is balm to my system. Other times, I just tell my soul to suck it.)

This kind of got stirred up for me because I was reading a really interesting book last week called The Ear of the Heart: An Actress’ Journey From Hollywood To Holy Vows (by Mother Dolores Hart, O.S.B. and Richard DeNeut). Besides just being a fascinating story, I related to it on a personal level because a few years ago the author developed neuropathy (chronic nerve pain). And I’m always interested to see how other people come to terms with their chronic pain.

I liked Mother Dolores  right away, because she states, “I am not easily persuaded by ‘religious’ answers, in spite of the fact that I am a Roman Catholic convert and a member of a monastic community. I’ve found my answers step by step.”

She then goes on to say, “I do believe that, whatever the medium is, the connection to people has to come down to a living person. Some one has to embody the realities, or it doesn’t mean as much.”

And later, “…I have learned in my years of contemplation that one’s deepest wounds, integrated, become one’s greatest power. You have to speak about it. It is your mission.”

I’m not sure exactly what I think about this, but I do enjoy having something new to chew on.

 

 

The Marathon

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Alarm goes off.

Eyes open.

Tiny hope…but no.

Pain flickers on with the lights.

Dammit.

 

Only five seconds in,

But I already know exactly how this day is going to go.

 

Deep breath.

Shoulder the realities of my existence one more time.

 

Feel into my body:

Same burning forearms,

Same throbbing shoulders,

Same flaming knees,

Same song, verse  #7098.

 

#$@!

Who set my skin on fire?

Clothes on body-necessary, but excruciating.

Nudge from a cold, wet cat nose

is enough to send me over the edge.

 

Grateful for my pain meds,

but relief comes with a price:

Slow mind,

heavy body,

can’t write,

can’t think,

can’t drive.

Stuck.

At.

Home.

Again.

 

So bored of my office.

So bored of that couch.

So bored of those books.

So bored of this computer.

So bored of those TV shows.

So bored of these medications.

So bored of that crack in the ceiling.

So bored of those beige walls.

 

I am boringly beige,

inside and out.

 

So tired of being in pain.

So tired of thinking about being in pain.

So tired of talking about how much I think about being in pain.

 

How many different ways can I say, “Hey-I hurt! And it really  *$@ing sucks!

 

My normally fascinating inner world

is completely tapped out.

Now my  interior landscape

is just as blah as my surroundings.

 

That’s the worst of all.

 

I’m too bored to be angry.

I’m too bored to be depressed.

(Do I even need to mention

how bored I am of being bored?)

 

I’m even too bored to swear.

People: that is some serious “bored”.

 

Some days I shuffle across the finish line and pass out.

Some days I run manic, just to shake things up a bit.

But mostly, I’m just so damn tired of living in this unresolved chord.