A traveler am I, and a navigator, and every day I discover a new region within my soul.
-Khalil Gibran
Sometimes You Just Get Knocked Back To Square One
Today I am feeling down. I’ve reached the point where I’ve been in so much pain for so long that I have run out of words. There just aren’t any more ways that I can think of to say, “I hurt. I am weary. Just putting on pants feels like climbing Mt. Everest. Dear fibromyalgia: YOU SUCK GIANT DONKEY BALLS.” Well, OK-that last one never gets old.
I’ll let Rob Thomas’ song, “Her Diamonds” speak for me today. He wrote it for his wife, who’s also suffered with chronic illness.
Oh what the hell she said
I just can’t win for losing
And she lays back down
Man there’s so many times
I don’t know what I’m doing
Like I don’t know now
By the light of the moon
She rubs her eyes
Says it’s funny how the night
Can make you blind
I can just imagine
And I don’t know what I’m supposed to do
But if she feels bad then i do too
So I let her be
And she says oh
I can’t take no more
Her tears like diamonds on the floor
And her diamonds bring me down
Cause I can’t help her now
She’s down in it
She tried her best but now she can’t win it
Hard to see them on the ground
Her diamonds falling down
Today is a day for me to go back to basics.
Today my question is, “How can I help myself feel a little bit more comfortable?”, not, “What can I clear off of my To Do list?”
Today I need to ask, “What would feel soft, and gentle, and soothing?” instead of “How many words can I write?”
Today I revert to my “default” settings; the activities I can actually manage when I hit bottom. For me that is pain medicine, jammies, the couch, TV, mystery novels, and a cold drink.
Today I declare that this is enough.
I’m Sure What He Really Meant To Say Was, “Wow-That’s A Great Idea!”
The other day my husband and I were discussing The Ice Situation in our house. I love ice. I must have ice. I need so much ice in fact, that it’s frequently difficult to fit any of my beverage in the same glass with all of my ice. So, unsurprisingly, my ice needs frequently outstrip the ice maker’s ability to supply them.
I have come up with what I feel is a brilliant strategy; if the ice is low and I’m finished with my drink, I will rinse my ice cubes off and dump them back in the freezer. (And before you get all skeeved out: it’s just the 2 of us here, we NEVER EVER have any company because we are both the biggest hermits that you will ever meet, and, after 23 years of dating and marriage, if we were going to each others’ get cooties, it would have happened by now.)
As I was explaining my brilliant recycling strategy my husband looked at me and said, “Is that why sometimes the ice is purple? I cleaned out the entire freezer because I thought we had a fungus.”
“Oh-nope,that was just me,” I replied.
My husband just looked at me for a beat and then shook his head, saying, “You are the strangest woman I have ever known.”
“Um, I prefer to think of it as quirky, eccentric, and entertaining,” I countered.
“Well, you do entertain me,” he said, smiling.
I guess one out of three’s not bad.
Cranky Fibro Girl 5 Years Later: I Wonder Where We’ll Go From Here?
Now that my fibro has sort of leveled out and I’ve been able to catch myself up to myself, I’ve been looking back over the past five years to kind of review and integrate everything that’s happened to me.
And while at the time I was living through them those years seemed completely chaotic and random, in hindsight I see that each year was actually focused around a pretty specific theme.
2008 was The Year Of Being Deathly Ill, And Then Finally Getting A Correct Diagnosis
2009 was The Year Of Fury, Rage, Pushing Against, And Feeling Utterly Betrayed By Life
2010 was The Year Of Denial, Bargaining, And Magical Thinking
And then after all of that, the best way I can describe 2011 is, The Year Of, “Huh”.
It reminded me of a scene from the very first Harry Potter book, where orphaned Harry is living with his extremely non-magical aunt, uncle, and cousin. They cannot stand Harry, and so they do everything in their power to mistreat him, especially his spoiled rotten cousin, Dudley.
In the scene I’m thinking of, Dudley has just been informed by his father that Harry will be moving out of his cupboard under the stairs into Dudley’s “second bedroom”, at which time Dudley pretty much loses his sh*t.
“Next morning at breakfast, everyone was rather quiet. Dudley was in shock. He’d screamed, whacked his father with his Smelting stick, been sick on purpose, kicked his mother, and thrown his tortoise through the greenhouse roof, and he still didn’t have his room back.”
That is exactly how I felt at the beginning of 2011. I had raged and ranted, screamed, shrieked, agonized, emoted, dramatized, thought, willed, given up, started over, cried, resisted, denied, accepted, forced, surrendered, basically pulled out all the guns in my arsenal in my attempt to BEND THIS ILLNESS TO MY WILL. But no matter what I did, it didn’t work.
So by the end of those first three years, just like Dudley, I was stunned, and rather quiet inside. There was nothing left for me to try; I had to admit that, at least for the foreseeable future, this illness was sticking around.
The question then became, given the reality of my situation, how was I going to live with it? How could I manage the pain, and the fatigue, and the not-being-able-to-plan past-the-next-five-minutes, and the limitations on what my body could do, and the frustration of constantly having to start writing and stop writing and start writing all over again depending on my unpredictable pain levels, and create an everyday life for myself? A life that maybe, possibly, perhaps I could actually enjoy.
So the theme for 2012 has turned out to be The Year Of Investigating Possibilities And Exploring My Capacity.
In a couple of previous posts I talked about exploring my relationship to my body and the way I was presenting myself in the world.
I’ve also been able to travel a bit which is nice, because we now have a nephew on my side of the family and a niece on my husband’s side. So I’ve had a lot of fun exploring what it’s like to be an aunt.
Additionally, I’ve been learning how to focus a bit more seriously on my writing. I took some great classes, and I’ve been working on how to choose an idea and then stick with it, developing it over a longer form than just a blog post. And I received the wonderful surprise of being named one of the top 21 Fibromyalgia Blogs of 2012.
But for the past few months or so, I’ve felt as though I’ve been experiencing a sort of identity crisis when it’s come to blogging here as Cranky Fibro Girl. Because I am a completely different person, in a completely different place, living a completely different experience of fibromyalgia than when I first got sick.
When I started blogging as Cranky Fibro Girl back in 2009, everything about this chronic illness experience was new. I had no idea what I was doing, I was ground down with pain, and I was pretty much pissed off at the entire world. Luckily for me, this provided me with a never-ending stream of things to snark about.
But now I am feeling a lot better (relatively speaking-I am currently in the fourth month of a nasty pain flare-up that shows no signs of going away anytime soon, but I know how to take care of myself now). I’m not so angry anymore; I don’t need to rage against the world like I used to. I have a great support system, great doctors, and treatments that are helping.
So now I’m wondering, how do I “be” Cranky Fibro Girl now?
How can I be feeling better and still be funny and snarky?
What do I want to write about now that I’m in Year Five, rather than Year One?
How can I keep the essence(s) of expressing myself as Cranky Fibro Girl while the shape of my illness is evolving?
I don’t know.
But I suspect that working out the answers is gonna be a hellavu fun ride.
This Is My Brain On Way Too Much Pain
For the past 3 months or so my life with fibromyalgia has turned into an endless marathon, a grueling exercise in endurance with no relief in sight. I feel like a rubber band that spends all day being pulled in opposite directions; I become tissue paper thin, but I never break. I fall into bed at night, but one of the vicious aspects of this illness is that nighttime and sleeping don’t actually provide recovery from the previous day, so every time I wake up I start my day from an ever deepening place of depletion and weariness and pain. I blame this for the position I find myself in now.
It all started off so innocently, as these things do. I had just about finished watching all 8 seasons of NCIS on DVD, and I needed another form of entertainment to distract me from how awful I felt. But my brain was so trashed from having to spend all of its efforts on remembering to take my medicine, and engaging all my pain-management techniques, and doing the bare minimum necessary to keep the house and our family running, that I was having a lot of trouble with shows where I really had to pay attention to plot lines and characters. Plus, I had reached the point where I was completely fed up with my clothes and my lack of style, so on the advice of a number of friends I began to watch “What Not To Wear” on TLC.
I have never watched any “reality TV” before, but WNTW is really a feel-good kind of show. Stacy and Clinton genuinely want to help people, and the women are all so happy and confident by the end of their makeovers, and I’ve been able to learn tons and tons about fashion without ever having to leave the comfort of my own living room. But now I realize that, in addition to all of these things, WNTW played a deeper and more powerful role for me than I realized: it became my gateway drug into the world of (allegedly) unscripted TV. I never even would have considered watching those kinds of shows before, but after a couple of months of watching-and, more importantly, enjoying-this type of entertainment, if I happened to turn on the TV in the middle of another reality show, I was much more likely to stop and watch it instead of immediately flipping to another channel.
But you all know what happened next; after a while, 2 shows just weren’t enough. I had to have more.
So then came “Breaking Amish”. I was really excited about this show, because I love stories about people’s spiritual journeys and religious traditions. But oooooh, how wrong I was about that.
(Yes, I know you’re all laughing here at my embarrassing naivete;. “Oh, bless your heart,” I can hear you saying ,” she actually thinks these shows are real.”) But how was I supposed to know? This was all virgin territory for me, remember? How could I possibly know, with a different scandal breaking every five minutes or so,that this could possibly turn out to be the least “real” show in the entire history of “reality shows”?
I know now that the show is basically baloney, that it’s actually been a long time since any of the participants lived as Amish, and that pretty much nothing they’ve been saying is the truth. But you guys, I am hooked; I cannot look away. I am powerless to break my fascination with this train wreck. Jeremiah gets an enormous tattoo! Kate accuses Sabrina of practicing witchcraft! Rebecca had all of her teeth pulled out when she was 19 and now wears a full set of dentures! HOW CAN I NOT WATCH?
As you can imagine, by this time the dam had burst, and now I was watching any and every show I could find. And it just became easier and easier to “justify” my actions.
Long Island Medium: “Well, I’m all about the woo, so this is a perfect fit for me. Plus it feels really good to see how much she helps other people with her gift. And I really need to be around things that feel good right now.”
The Big Jig, which follows 5 girls from the United States as they go to compete in the World Championships of Irish Dancing: “Educational, informative, and does not require a lot of strenuous thinking on my part.”
Dance Down South, a show about rival clogging teams: “Well of course I had to watch this-one of the teams is from Cumming (GA), and once I was offered a job teaching Spanish at one of the high schools there, and some of those girls probably would have been my students, and so naturally I have to support these people from my imaginary life that almost happened.”
Faster and faster was I falling down this slippery slope. Because it wasn’t very long until I was watching things like this:
The Half-Ton Killer, where an 1,100 pound woman claimed to have killed her nephew by accidentally rolling over on top of him, and then had to have an entire outside wall of her house removed so that she could leave to attend her trial, but then was found to be lying because he’d been killed by a blow to his head, and she was so heavy that she was unable to lift her arms by herself: “Um…I like murder mysteries?”
And, I confess-I even watched the end of an episode of Honey Boo Boo, the one where Alana wins the People’s Choice Award at one of her pageants and is rewarded with a visit by Glitzy the piglet, her erstwhile pet, which honestly was FREAKING HILARIOUS, and totally worth the shame and embarrassment I suffered when my husband found out.
But this morning as I was happily settling into the couch to check out Secret Princes (“This show is taking place in Atlanta, right under my very nose. I must watch so I can keep up with what’s going on in my city!”), I finally saw the writing on the wall, the sign that things needed to change as soon as possible. Because there, in the lower right-hand corner of my screen, TLC was advertising their new, captivating saga:
“My. Giant. Face. Tumor.”
Please consider this to be my cry for help.
And In “Signs You Might Have Spent Just A Bit Too Much Time In The Corporate World” News
I Believe This Silver Lining Kicks All Other Silver Linings’ Ass
The other day I was talking with a friend of mine who also suffers with a chronic illness, and we got to talking about our different medications. Her illness requires her to take courses of a pretty heavy-duty antibiotic, which she admitted can be really rough on her system.
“But on the bright side,” she said, cheerful and positive as she always is, “I never have to worry about getting leprosy.”
Today I Am 40 And Fabulous!
Dear Saturday: Is This Really The Best You Can Do?
2012: The Year Of Preparing For Awesome. Part 2
OK, so when I left off a few posts ago I showed you what I looked like before The Huge Hairstyle Change. Here’s what I looked like afterwards:
I cut off 4 inches, got a keratin treatment (my hair’s new best friend), and went straight instead of curly. I LOVE it!! I felt like the burden of the past 5 years of illness lightened up a bit with all the hair I got rid of, and I finally feel that my hair matches the essence of who I am. Plus, with my new style there’s definitely no more hiding behind my hair anymore, which is both scary and exciting.
And speaking of hiding, in order to really affect the changes I’ve been wanting, I had to stop spending all my time and energy on trying to hide my body (which wasn’t really working anyway). The scariest thing I’ve ever done in my life up to this point was the time I took a class on and then performed stand-up comedy five years ago (scroll down to the second group of posts, if you’re interested in reading about that). But coming out of hiding about what my body and I actually look like after the past 5 years of being battered by the effects of illness and medication is definitely Number Two.
I have a lot more to say about weight and body image and whatnot, things that I’ve learned and wrestled with and worked through, but that is material for another post. This post is more of a quick summing up the work I’ve done this year in getting myself to a place where I feel fabulous about turning 40. And as part of that work I’m taking a very deep breath and coming out of hiding just a little bit more by posting a recent picture of myself. I”m not quite brave enough to do “Before”, but you can just imagine someone who is completely ashamed of her body, hides in over-sized, sloppy clothes and dodges the camera as if her life depends on it.
This picture is me now, after a l-o-o-o-o-o-t of (and still ongoing) work on making peace with (and actually befriending) my body, coming to terms with the way my body looks right now, in this moment, while still working on the goals and desires I have for it, learning to dress in a way that flatters my body right now, in this moment, and-and this is the really huge part, the part that has taken me 40 years to be able to say-realizing that I am pretty right now, in this moment. And that feels pretty damn awesome.
