Cranky Fibro Girl

Harnessing the healing power of snark

You Don’t Know What You’ve Got ‘Til It’s Gone

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But in this case, I was glad to see it go.

The past four months have been so hard for me, pain-wise. Which of course means that they have then been so hard for me, life-wise, as well.

Finally last week I decided to go and see my fibro doctor, to see if there was anything else I could do to help manage this STOOPID illness, and lo and behold, there was!

Instead of tweaking my Lyrica, which is so hard for my body to handle after a certain point, we tweaked an anti-depressant that also works like Lyrica, impairing your brain’s ability to feel pain.

And oh, how my world has changed in just one week. I started feeling better the very next day, when I realized that, in addition to the pain, I had also gotten stuck in a depression. That seems so obvious now, but of course I can never see it when I’m in it. The pain -and accompanying depression-ground me down so slowly, bit by bit, that it’s like every day another, slightly darker, filter is placed in front of my mind/vision, until the way I’m seeing and interpreting the world just seems normal.

And so, God Bless Antidepressants!

Unfortunately, whenever this happens to me I am unable to write. For one thing-and I am not exaggerating here-just the simple act of getting out of bed and walking to the kitchen to say goodbye to my husband in the morning feels like climbing Mt. Everest. And then add that feeling to every other action I have to perform merely to get through that day, and it is impossible for me to even pull my blog up on the Internet, much less use my mind to generate a post.

However: things are definitely looking up here in Cranky Land, and I am working on getting the words and the funny flowing again.

So thank you guys so much for sticking with me through all these ups and downs. It really supports me in being able to tell the truth about living with STOOPID fibromyalgia-even when it’s a bit (or a lot) dark and dreary.

OK-talk to you soon. And as always, May The Cranky Be With You.

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.

Milestones

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So I’ll just go ahead and let you know at the beginning of things here that this post is not a story, does not have any kind of moral, will probably not be funny, and has no punchline. But given the fact that I’m writing about my everyday life which does include this whole chronic illness thing, I realized that I need to take a few minutes and document the good things that have been going on lately, for the next time I get Illness Amnesia and forget that my life has ever been any other way than how I am feeling in that particular moment.

1. For the first time in 2 years I had both the energy and desire to participate in the holidays. And I only had some mild backlash of physical symptoms when I got home.

2. I have been able to start taking on household responsibilities again, which makes both me and my husband feel better.

3. I have discovered Bite The Candy sessions hosted by the fabulous Cairene MacDonald of Third Hand Works.

“When we put something off – even a simple task – it can become encased in layers and layers of stories: our excuses for not doing it in the first place, our guilt about not having done it long ago, and so forth.

That unfinished task becomes a giant tootsie-pop of a to-do, yet at the center remains the yummy tootsie-roll goodness of having gotten the thing done.

And we we all know there are two ways to eat a tootsie pop: you can slowly lick your way to the center or you can just bite the candy and enjoy it now.

Sometimes you need to take your time. Sometimes you need to explore what your procrastination and resistance to this thing is all about. Sometimes you need to be patient with the process and yourself.

But sometimes all you need is a period of focused time – along with a bit of guidance, accountability, encouragement, humor and comraderie – to finally get that tootsie-pop off your to-do list. And that’s what Bite the Candy sessions are here for.

Bite the Candy teleclasses are held the last Thursday of each month.”

The first time I ever participated in one of these I had 2 boxes full of all the filing I did not do in 2009. Over a year’s worth of filing that I had pretty much decided was just going to hang around my neck forever, a giant, soul-sucking, forest-destroying albatross.

But thanks to the power of Not Having To Do This Really Icky Thing All By Myself, by the end of the session I had touched every single piece of paper in the box and sorted everything into piles, and by the next day I was able to put everything away. It was truly a miracle. I cannot TELL you what a load was lifted off of my mind.

So now I’ve been using the sessions to work on tax-related tasks, and again-The Power Of Not Having To Do Icky Things All Alone has been coming to my rescue. You should definitely check these out.

In The Interest Of Full Self-Disclosure: Because I am still me, I do still tend to get a little over-excited when I’m feeling better and have energy to do things, so I do FREQUENTLY have trouble stopping The Doing before I get a migraine or a pain flare-up or both. So I’m still working on that.

4. A couple of weekends ago I drove myself, all-by-myself, up to North Carolina for the first time in 2 1/2 years. There was a speaker I wanted to hear coming to a church near where my parents live, and I really wanted to go see her. And so I did.

Extra Bonus Yay: This was the also the first time in 2 1/2 years that I’ve wanted to go and do something fun like that for myself.

So I made it there, and I made it back, and I made it through the two days of the conference. And I was so relieved to know that if I ever HAD to take myself somewhere, I could. It’s been really hard-and scary-to be so dependent on other people.

Extra Bonus yay: I went to go and hear Angela Thomas, who is a pretty well-known author and speaker in certain circles. But before she was well-known she was just out of seminary, where her first job was as Minister to Senior High Girls at the church I attended at the time. She was there for the fall of 1987, and then she left to go on to other things. So I was 15 when she knew me.

Now I am 37, and yet: when I went up to talk to her before one of the sessions SHE TOTALLY REMEMBERED WHO I WAS! Which was just so cool.

In The Interest Of Full Self-Disclosure: While this turned out to be a totally awesome long weekend, I can now say with certainty that what I did was just a tad overly ambitious for where I am in my recovery, as upon my return I spent pretty much the next week and a half in abject misery, with every medical issue I have all trying to kill me at the same time. But at least now I know what my abilities and limitations are right now.

So there you go. It’s really nice to be able to document some Yay! items for a change.

Why Pain-Free Days Aren’t Really All That “Free”

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I have been having a few pain-free days lately (although I’m terrified to even write this, lest I jinx it somehow. It’s hard not to be superstitious when you’re living with something as unpredictable as a chronic illness). I’m very grateful, and very appreciative for these days, but I’ve stopped announcing them to the world at large, because people who aren’t sick just don’t get the fact that starting to feel good after m-a-n-y days of being in pain is just as difficult and disorienting as it is when you start to feel bad after a handful of days of feeling good. And when I try to explain to anyone else why I’m kind of weirded out by a feeling-good-day and don’t know what to do with it, as much as I know they want to help, I cannot “just enjoy it.”

The best example I can use to explain what this is like is the time when I was a senior in high school and Hurricane Hugo came barreling through Charlotte, where we lived at the time.

There was the period of hurricane, which was scary and destructive.

And then the hurricane passed.

But then there was the aftermath.

Just like when you make it through yet another pain cycle.

And since the hurricane metaphor really works for me, I’m gonna keep on going with it to try and explain how living with a chronic illness is similar to living through some sort of natural disaster.

1. First, you must survive the hurricane/pain flare-up.

“When you’re at the end of the road
And you lost all sense of control
And your thoughts have taken their toll
When your mind breaks the spirit of your soul

Your faith walks on broken glass
And the hangover doesn’t pass
Nothing’s ever built to last
You’re in ruins”

“21 Guns”, Green Day

2. You must figure out how to transition out of existing in crisis/survival mode.

“Find me in the river
Find me there
Find me on my knees with my soul laid bare
Even though you’re gone and I’m cracked and dry
Find me in the river, I’m waiting here

We didn’t count on suffering
We didn’t count on pain
But if the blessing’s in the valley
Then in the river I will wait”

“Find Me In The River”, Delirious

3. You  must make sure that the hurricane has truly passed, and that you are not just temporarily in the eye of the storm, with more devastation on its way.

“I know what you’re thinkin’
We were goin’ down
I can feel the sinkin’
But then I came around

And everyone I’ve loved before
Flashed before my eyes
And nothin’ mattered anymore
I looked into the sky

Well I wanted something better man
I wished for something new
And I wanted something beautiful
And wish for something true
Been lookin’ for a reason man
Something to lose”

“Wheels,” Foo Fighters

[Read more…] about Why Pain-Free Days Aren’t Really All That “Free”

Battered And Bruised

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So I have all these ideas for like three different cool posts but unfortunately, even though the spirit is very willing, the flesh is weak.

I have been spiking numbers higher than 10 on the pain scale for the last handful of days, so all of my time has been taken up with managing the pain, as well as all of the mental and emotional stuff that comes up when your whole world has shrunk down to, “OK, what’s going on in my body right now?, and “How can I make myself feel a little more comfortable?”

Thankfully I have very effective pain meds, a comfy  bathtub, and tons of great support, with people who check in with me many times a day to see where I am and what, if anything, they need to do.

Also, The Most Awesome Husband In The Entire World got me an iTouch for Christmas, and so now I pretty much have my own portable, hand-held, all-inclusive personal entertainment center with me at all times.

I said when I converted this site over to Cranky Fibro Girl that I would be writing about (in addition to tons of other things) my whole life experience when it comes to living every day with a chronic illness and chronic pain. And so this is a part of it, unfortunately. Days where the whole world shrinks down to, “What can I do in this minute to help myself feel a little more comfortable?” Not “better”. “More comfortable.” Because from this place, better is as far away from where I am as the moon is from the earth. And just about as impossible to get to right now.

So if anyone feels inspired, I would really like to request some gentle healing vibes/energy/prayers/thoughts sent my way. No specific outcome needed-just support and love and relief.

Thanks.

Jenny