Cranky Fibro Girl

Harnessing the healing power of snark

I Call Uncle

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I have fibromyalgia.

AND, I am a massively creative person.

I have ideas and possibilities and desires to try new things pretty much oozing out of all my pores at all times. I walk around in a shower of ideas for creative projects generated by the streams of creative energy that are constantly flowing through me.

In some ways, this is SO cool. I have almost no trouble entertaining myself, because I have an incredibly rich, complex, and well-developed inner world. And truth be told, I’d rather spend my time there than anywhere else.

But in other ways, this is So. Damn. Hard.

And the Particular Hard that I’m experiencing right now is the fact that I can no longer ignore the existence of my body and its current physical reality of living with chronic pain and chronic fatigue. And I can no longer deny the fact that my body, fatigued, battered, and aching, plays a role in bringing all of my various creations out into the world.

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Dear My Accupuncture Guy

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When you ask me how my last session was, and I tell you that it hurt A LOT when you put needles in my hand, ESPECIALLY RIGHT HERE, and ask you if there is an alternate spot, I do not mean, right next to the spot that hurt last time.

Also, I have a bruise on the other hand.

Also, I don’t CARE if “most people” have a hard time with that spot over there. That spot is fine for me. I have a problem with this spot right here.

And if you’re gonna ignore all the stuff I tell you, then don’t even bother to come back in a few minutes and ask how I’m doing. Because I’m starting to think that you don’t actually care.

Feeling like a cranky pincushion,

Jenny

Cranky Fibro Girl and The Acupuncture

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So today I had my very first ever acupuncture session, and oh, it was GLORIOUS.

I went in with a migraine, spent 20 minutes with the needles, and left with a neck so smooth and devoid of knots that I probably have not experienced since the womb.

As I left, the medical assistant gave me a chart that had suggested food to increase, and suggested foods to decrease. I read over it quickly as I was getting ready to leave, to make sure I didn’t have any questions.

The foods to increase looked good, with lots of fruit-LOVE my fruit.

Then I read the list of foods to decrease: chicken-ok, I can do that; corn-I’ll miss it, but it won’t be the end of the world; goat…

…

GOAT.

G-O-A-T.

“Uh, yeah,” I said to the medical assistant. “I DON’T think that one’ll be a problem.”

Time Is But The Stream I Go A-Musing In

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Time and I first became adversaries when I went off to college. Before then, I really don’t think we had a problem with each other. But that all changed as soon as I set foot on the campus of my
university.

I was so miserable in college-lonely, homesick, confused, you name it. But I was so young, and I didn’t know to tell my parents that I was so upset and needed help.So I gritted my teeth and
soldiered on, and that is when time and I became enemies.

I always felt like there was a race on between me and time; I was always running around, trying to find ways to fill up time so I wouldn’t have to feel my misery, and time was always looking for ways to f*** with me. It was continually shape shifting, trying to catch me off guard, trying to find gaps in my defenses and my strategies and my coping mechanisms where it could slip in and strike.

And overarching all of this was the feeling that time was a vice, and I was trapped inside it, and the clamps kept tightening, trying to “catch” my mind and trap it so that it would finally be stuck
in one place, conscious and aware, and completely at the mercy of time as time passed it by.

That’s my version of hell, actually-disembodied awareness and consciousness, trapped in endless time.

And although our relationship has gotten better over the years, I would say that time and I are still adversaries. Whenever I’m in pain, whether physical or otherwise, time seems to make it worse, because I have to be present in time, and pass through time, until I can get to a time when I feel some relief.

Hm-but now I’m wondering if that’s actually time’s “fault”. Maybe time is neutral, and my pain has been real, and, unfortunately for the painful times, the fact of being human and living in this world
means that time is what enables me to have experiences-some painful, some wonderful. But maybe the painful and wonderful actually don’t have anything to do with pain.

What if time is like the stuff you put on to prep a canvas for being painted? What if it’s like a stream running underground, or in the background, allowing everything around it to exist and live?

What if Being In Time is what allows me to experience things?

What if time is like air-just there, just being what it is? I can allow the air in, I can let in just a little bit but not a lot, I can resist air, I can refuse to let it in. But that has nothing to do with the air. Air is just air. Time is just time. In and of themselves they are neutral.

Just like there’s no life possible on a planet without water, there’s no life possible in me without breathing air.

And then as I’m living, experiences come to me, in some cases I can say “yes” or “no”, and go along my merry, breathing way.

But sometimes I don’t have any say over what experiences come (Fibromyalgia, anyone?!) and all I can do is choose how I interact with them. Will I stop breathing and resist them? Will I breathe a little bit and deal with it a little bit at a time? Will I try to take in too much all at once and overload my systems?

I didn’t choose to have this illness (this particular experience), but I can choose how I interact with it, at least up to a point.

What if time is just the backdrop against which my life is played out, against which it stands out as something that matters?

What if time is the mystical, alchemical substance, like gasses surrounding a planet, that animates human life and existence? And then air is what animates my particular human body? And then my
particular body is what animates and allows for my particular life experiences?

What if time is actually neutral?

What if it’s not actually my enemy, but my ally?

Whoa.

Reassurance

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So yesterday I went to see my fibromyalgia doctor because ever since my surgery I have been having really bad pain. Because-of course-physical trauma is one of the things that can cause fibromyalgia in the first place. It’s just such a lovely little circle I have going on here. (And do not even get me started on the migraines.)

I was trying to describe everything that was going on and, since I am a writer (and, ahem, something of a Drama Queen and Rampant Abuser of Creative License), there was much wild gesturing and saying of things like, “And then after being in pain for so many days I just go into this downward spiral and think things like, ‘Am I going to die?’, or, ‘Is this all there is to my life-just managing pain?’ ”

So he came over and started doing his physical examination and, wanting to be helpful said,

“Well, you will die. But not from this.”

And somehow, I was oddly reassured.

A Love Letter From Me To Me

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Sweetie, you are going through so much right now. And beating yourself up over all the things that aren’t getting done is just wounding you more and making you feel so much worse.

Remember how, when you are having fibromyalgia burning, and the kind of exhaustion that you can feel in your bones, and are recovering from major surgery, that this is the time that you are extra vulnerable, and so this is the time that we stay away from our blog, and any classes, and email, and housework, and the computer?

And remember that you have a fantastic husband who just needs you to ask him to do something, and then he is happy to take care of it? Remember that you guys are a great team, and that you do things together? No one has to go it alone around here.

And finally, remember all the other times when you have been in this same place, but that it didn’t last forever, and eventually you were back, feeling great, and ready for all the work you love to do?
If not, I’ll remember this for you, until it comes back around again this time.

Remember that you are very loved. And completely supported.

XXOO

See-I Always KNEW We Were The True Superheroes Of The World

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From McSweeney: The Only Thing That Can Stop This Asteroid Is Your Liberal Arts Degree.

“I’ve seen your work and it’s damn impressive. Your midterm paper on the semiotics of Band of Outsiders turned a lot of heads at mission control. Your performance in Biology For Non-Science Majors was impressive, matched only by your mastery of second-year Portuguese. And a lot of the research we do here couldn’t have happened without your groundbreaking work on suburban malaise and its representation and repression in John Hughes’ films. I hope you’re still that good, because when you’re lowering a hydrogen bomb into a craggy mass of flying astronomic death with barely any gravity, you’re going to need to draw on all the multidisciplinary reason and analysis you’ve got.”

And in other news…

From the land of, “Well, this is a total bummer”: Apparently, having your gallbladder removed does not magically cure your fibromyalgia.

So that would be Magical Thinking-0; and, uh, Non-Magical Thinking-“Ha Ha, Neener Neener, {{giant raspberry}}!”

Hitting Me Right Between The Eyes

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So I am reading this new (for me) book called, Sabbath: Finding Rest, Renewal, and Delight In Our Busy Lives, by Wayne Muller, and when I got to this passage my whole body started vibrating in recognition of the truth of what he was saying:

While recovering from a life-threatening illness, he writes, he realized that,

“I had always assumed that people I loved gave energy to me, and people I disliked took it away from me. Now I see that every act, no matter how pleasant or nourishing, requires effort, consumes oxygen. Every gesture, every thought, or every touch uses some life.”

Yes! This is what I have never been able to articulate to people who try and encourage me to “get out of the house and go do something.”

Say, for example, I wanted to go to the yarn store. Well, it’s not just “going to the yarn store.” It’s getting up, taking off my pajamas, showering, getting dressed, organizing things like purse and keys, opening the garage door, getting into the car, getting settled in the car, driving to the yarn store, parking, walking to the front door, stepping inside, being present with whoever is currently there, detaching from the people there, walking back to the car, driving home, taking off my clothes, and then putting my pajamas back on. And that doesn’t even include all the energy needed to look through patterns, decide on a project, find yarn for the project, and make my purchase.

“This is a useful discovery for how our days go. We meet dozens of people, have so many conversations. We do not feel how much energy we spend on each activity, because we imagine we will always have more energy at our disposal. This one little conversation, this one extra phone call, this one quick meeting, what can it cost? But it does cost, it drains yet another drop of our life. then, at the end of days, weeks, months, years, we collapse, we burn out, and cannot see where it happened. It happened in a thousand unconscious events, tasks, and responsibilities that seemed easy and harmless on the surface but that each, one after the other, used a small portion of our precious life.

…If we do not allow for a rhythm of rest in our overly busy lives, illness becomes our Sabbath-our pneumonia, our cancer, our heart attack, our accidents create Sabbath for us. In my relationships with people suffering with cancer, AIDS, and other life-threatening illness, I am always struck my the mixture of sadness and relief they experience when illness interrupts their overly busy lives. While each shares their particular fears and sorrows, almost every one confesses some secret gratefulness. ‘Finally,’ they say, ‘at last. I can rest.’ “

Amen.