Cranky Fibro Girl

Harnessing the healing power of snark

It’s Gonna Take A Whole Lot More Than Milk To Do This Body Any Good

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A little more on my relationship with August.

(originally published August 5, 2009)

So I’ve been thinking a lot about my body lately- and honestly, I KNOW that you’re just as tired of reading that as I am of writing it, but, oh well, that’s what’s up for me these days.

I am especially thinking about my body after last night, when my husband and I were eating pizza and bread sticks from Pizza Hut. As I was preparing to divide up the “dipping sauce”, my husband said, “Oh, you can have all of it,” and my body apparently decided to celebrate this generosity by causing me to dump half the container all over the fingers of my left hand, and, HOLY MOTHER is that stuff hot. I don’t have a history of burning myself (although I did once staple my own thumb on purpose, just out of curiosity to see what it felt like, which is really neither here nor there, but this is probably the best opportunity I will ever have to work it in in even a remotely tangential way to any story), and so this might have been the first burn I ever received in my 36 years, but from somewhere deep in the recesses of my mind I remembered hearing something about putting butter on burns.

But thank goodness for Google, which I checked before I did anything, because apparently putting butter on burns is only The Worst Thing You Could Possibly Do, and Google was all, “Um, hi-welcome to the 21st century,” and I was like, “Wow-so this is what modern health care looks like!”

I feel like I’m coming out of some weird alternate universe after these past 2 years of being sick, which means I’m having to become reacquainted with my body. I don’t really know what to expect, and I also don’t really know what it can or can’t do yet. I do, however, know that the one place I am not going to for help with this situation is any kind of medical, health, or nutritional “authority”.  Because all of those people so obviously go out and smoke a gigantic bowl of crack before they come back and make their “official” proclamations, which we are all then supposed to unquestioningly follow. Here’s a perfect example of what I mean.

You know that whole stupid chart doctors pull out that supposedly tell you what weight you should be according to your height? Well back when I was in high school (’86-’90) it said that a woman who was 5 ft. tall should ideally weigh 100 lbs. And then for every inch of height after that, you would add 5 lbs. So according to this plan I, as a 5’2″ female, should weigh only 110 pounds.  Which will clearly only happen in the event that I suddenly become a refugee or a prisoner-of-war. Apparently the people (most likely MALE people) who compiled this chart were unaware of the fact that women are actually 3-dimensional beings.

Now we do have a friend who is only 5 ft. tall, and probably does weigh only 100 lbs., but she is definitelythe exception rather than the rule, and I’m pretty sure that’s because she was constructed using only the bones of one tiny sparrow and a few golden clouds. She is very tiny and very cute-like a miniature doll you might want to pick up and keep in your pocket. And as a matter of fact she frequently has random strange men come up to her and tell her this very thing. That is, of course, the very last thing they say, right before she kills them and feeds their bodies to sharks. Which they clearly deserve  because, seriously-that’s just creepy.

Of course, if I really want to feel badly about myself, I need look no further than my grandmother, who, when in college, was featured as one of LOOK Magazine’s “Most Beautiful College Girls of 1941″. (And while we’re on the subject her husband, my grandfather,was a Double Ace in World War II, a well-known criminal attorney, and once tried a case in front of the Supreme Court.) So I guess you could say that THE BAR’S BEEN SET KIND OF HIGH IN OUR FAMILY, as far as notoriety and life achievements go. Which probably goes a long way towards explaining why it is So Very Hard for me to just rest and recover, given all these inherited genes that want to be out conquering the world. (Oh, and speaking of worlds, have I mentioned that on the other side of my family I can trace my ancestry back to the Mayflower through four separate family lines?  Four separate ancestors who ACTUALLY DID go out and conquer a new world? Seriously, it is a freaking miracle that my brain has not literally exploded all over my office, which is where I spend most of my days, totally not resting.)

It’s really f*&%ing stressful that my biggest accomplishment of late is figuring out what adjustments I needed to make in my daily treatment program that would allow me to once again have normal, rather than clown-sized, hands and feet, given this whole family legacy, as well as the fact that in his current postdoc position my brother routinely solves math problems where x=The Universe and Y=The Current Vibrational Level Of Human Consciousness.

Oh well, at least I still have some things: sarcasm, crankiness, and the ability to find a way to mock just about anything. And I’m still the first person people go to for entertainment, and for sharing the wacky things they see in life. Because, as my mom says, “You are the ‘Ass Person’ in the family.” (Truly, is there a better, more multi-purpose word in the English language than ‘ass’? I think not.)

Ha-take that, Pilgrims!

A Medium-Grey Night Of The Soul

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About this time last year I slid into a little bit of a funk. There was nothing wrong, nothing bad that happened to provoke it, and it wasn’t that I was depressed or miserable. Everything just felt sort of muted and opaque until this past spring, when we got the invitation to our first 25th high school reunion.

Both my husband and I have reunions this year, but his rolled around first. Which meant that it became the catalyst that brought into sharp relief all the unfocused thoughts that had been swirling around in my head for the previous 9 months or so. Not surprisingly, they were all different versions of, “This is not where I thought I’d be by now.”

Most of the time I’m actually amazed at what I’ve accomplished, where I am, and most especially, who I am. But having to step out of the world I’ve created here for myself and go back-even just for one night-into the arena of more traditional life choices really threw me off.

Part of it is the grief I always feel as a chronic illness patient in the middle of a group of healthy people. There’s no way I can help noticing the difference between their physical capacity and mine, in even the simplest activities like sitting, standing, and socializing. I hate being reminded of how sick I am.

And I am sick. Over the past 3 years my symptoms have worsened significantly, and my body is weary and worn down. My external world has gotten smaller and smaller, and I’ve become more and more housebound and dependent on medications. So it’s incredibly painful to be in an environment that constantly highlights this, especially on a night that is basically all about toting up your accomplishments of the past 20 years.

Part of it is the fact that, at almost-43, I really can’t deny any longer that I’ve entered into Middle Age. There are lots of physical changes, like grey hairs and the inability to read small print, but then there’s also the realization that I’m probably not going to become some kind of world-famous superstar. I’m not actually going to be able to do ALL THE THINGS! I can’t keep all life possibilities open all the time. And when I choose one thing over another, there’s a good chance that the other one is gone for good. It came as  a complete surprise to me, but it turns out that I’m only human, and there are limits to this human life.

Then there’s the fact that, compared to the majority of our classmates, I have taken many of the paths less-traveled.

My husband and I went to college-prep high schools and universities that focused on preparing students for mainstream professions like business, law, medicine, finance and the like. Not everyone went this route of course, but there are enough that did to make me obsess over the fact that I don’t have A Thing, by which I mean a neatly summed-up, easily recognizable answer to the question, “So what do you do?”

So I scheduled a couple of super-intense, emergency situations with Lynne where she gently questioned the stories I was telling myself about this whole situation, WHICH WAS NOT AT ALL ANNOYING when all I wanted to do was freak out and feel victimized by life. But eventually I was able to get over myself enough to hear her when she reminded me of the things that are true about who I am:

-I do not actually want A Thing. My Thing is that I am a freedom-seeker; always have been, always will be. I like the idea of A Thing, something pithy to print on business cards and post in our annual Christmas letter, but every time I’ve tried to fit myself into the mold of A Thing, it has slowly leached away my soul and sucked away my will to live.

-Also, I like to choose. When I’m honest I remember that I don’t like trying to do ALL THE THINGS!, because I just get so overwhelmed that I say “Screw it!” and go eat some Thin Mints or buy something on Amazon. Saying yes-and no-is a big relief.

-I don’t really want to be a world-famous rock star. That would cut too much into my Daydreaming-and-Following-All-The-Rabbit-Holes Time.

But the most important reminder of all is that I love my life. Even suffering from fibromyalgia and bipolar disorder, my everyday life is really good. And I am damn proud of all the work I’ve put in to be able to say that, because it was NOT easy. And yes, I may have had to buy bifocals, and I may now be too old for many of the fictitious objects of my television show crushes, but I am super-comfy in my own skin, and only becoming more so. So, BRING IT, 40s.

It’s true that the way I’ve chosen to live my life means I don’t have a lot of external achievements to show for myself in comparison to someone who’s pursued a traditional career, and sometimes that’s hard.  Especially when one of your husband’s best friends during high school was the wife-half of the husband-and-wife team who wrote the score for “Frozen”. (Who, incidentally, is one of the smartest, funniest, most creative people I’ve ever had the pleasure of knowing, so I was actually really looking forward to seeing her again. Things just got funky when I fell into that whole trap of “comparing my insides to someone’s outsides” thing.)

So after hacking through all my mental drama, and then unexpectedly learning I’d gone down 2 sizes when I went shopping for a new outfit, the reunion turned out to be a lot of fun.

Although that’s not to say that it wasn’t weird at first. As I told someone (whom I later remembered was a psychologist), because we don’t have children, I feel like I’ve never had to grow all the way up (and there’s the material for your next article-you’re welcome). So when we got there and I first saw all these grownups with big houses, and jobs, and teenagers my brain sort of exploded from all the cognitive dissonance because all I could think was, “There is NO WAY I am as old as all of you!”

But then that wore off, and I started to enjoy myself.

It was fun to remember ourselves as teenagers, and then see how far we’d all come. And since my husband and I started dating at the end of our senior year of high school, it was fun to be around people who were there at the beginning of our history together.

Then there was the time I was talking to the Lopezes about their post-“Frozen” projects, and then they started asking really nice questions about my blog and, drawing deeply on my skills as a careful crafter of language, I lost all ability to form coherent sentences. I wanted to yell, “Wait! I didn’t study for this part of the test! I only reviewed, ‘How Not To Have A Meltdown’; I forgot to look over the section on ‘How To Talk Intelligently About My Work’.” But they were very nice, and there’s always the chance that it was too loud for them to actually hear anything. A girl can dream.

So the bottom line is that I not only survived but also had a good time and, unexpectedly, the whole experience somehow busted me out of my funk. And given the intensity of the angel-wrestling I did to prepare for this, I’m putting life on notice that when my reunion comes up in the fall, I expect it to be as easy as a hot knife through butter. I guess I’ll just have to wait and see.

 

 

 

 

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.

 

 

Bipolar Brain Part 2: Liar Liar Pants On Fire

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As I wrote in my previous post, when I am seriously manic it feels as though I’ve reached the absolute heights of ecstasy, at least to begin with. But mania takes an incredibly heavy toll on my system, starting with the fact that when I finally plummet back down to earth, the contrast between my non-adrenaline fueled life and my mania-driven existence seems excruciating and unbearable. It happens so abruptly that it’s like slamming on the brakes when you’re going a million miles an hour around a track;  you skid, you spin out, your brakes lock up, you strip all your gears, and you smash into all the other cars around you and then explode in a giant (metaphorical) fireball.

Plus, it leaves you with a hell of an emotional hangover.

It reminds me of the scene in “Top Gun” when Tom Cruise’s and Anthony Edwards’ characters have just buzzed the control tower in their really expensive military aircraft, and while they’re getting chewed out by their commanding officer he tells  Tom Cruise, “Son, your ego’s writing checks your body can’t cash.” But in this case my maverick check-writer is my mind, and when it comes time to pay up there’s nothing left in my energetic, emotional, or physical bank. So I’m hungover and overdrawn.

****

Then, as if that weren’t enough to cope with, when I’m in this raw and vulnerable place my old buddies, All-or-Nothing Thinking, Grandiose Thinking, and “I Am Special” Thinking rush in and spin a story  that makes me feel even worse. Because, if you remember, they are giant hairy lying sacks of lies.

[Read more…] about Bipolar Brain Part 2: Liar Liar Pants On Fire

The Seduction Of Mania, Or, Why Bipolar Mind Is A Big Fat Liar

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Yesterday I was talking to my Partner-In-Crime, Lynne, and we had what seemed like the millionth session of working on my Bipolar, rapid mood-cycling stuff. If you’ve never experienced this yourself,  I’ll just give you a quick description of  what it feels like for me.

If you remember those spring and bar scales you had to stand on at the doctors’ office, then imagine that they represent our emotional range. Now, on those scales you can only move the bar so far in either direction before you hit the edges; this is how I picture a healthy emotional range. It goes from unpleasant emotions up to good-feeling emotions, but it has some governors on either end.

But on my emotional scale there aren’t any edges; there’s nothing to stop me from tipping over into emotional extremes, and then just falling off the scale altogether. Over, and over, and over, and over, and OVER. I might be able to pull myself back up onto some kind of middle ground, but when this stuff is really triggered I just slip right back down the other side into what feels like a bed of emotional nails.

I’m grateful that I don’t have the most severe form of Bipolar, but oh my gosh, what I have is so SO hard to manage, and I am one of the fortunate ones. I have good meds and incredible support, so I’m not alone; but then again, I am alone, because when it all comes down it is just me and my mind.

Generally speaking, I love my mind. I love to think. I love information. I love to take classes and learn something new. But when my Bipolar stuff is activated it’s as if my mind is betraying me, because the tricky thing about this illness  is that Bipolar Mind lies. And if Bipolar Mind is the bully, then All-Or-Nothing Thinking, Grandiose Thinking, and You Are “Special” Thinking are its enforcer thugs.

[Read more…] about The Seduction Of Mania, Or, Why Bipolar Mind Is A Big Fat Liar

I Have Been Working On This A Lot, Lately

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“There’s something infinitely sad about little girls who grow up understanding (usually unconsciously) that if God is male, it’s because male is the most valuable thing to be. This belief resonates in a thousand hidden ways in their lives. It slowly cripples girl children, and it cripples female adults.”

-Sue Monk Kidd, The Dance of the Dissident Daughter

Good Words

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Thanks to Amna for this.

God Says Yes To Me

by Kaylin Haught

I asked God if it was okay to be melodramatic
and she said yes
I asked her if it was okay to be short
and she said it sure is
I asked her if I could wear nail polish
or not wear nail polish
and she said honey
she calls me that sometimes
she said you can do just exactly
what you want to
Thanks God I said
And is it even okay if I don’t paragraph
my letters
Sweetcakes God said
who knows where she picked that up
what I’m telling you is
Yes Yes Yes

 

Good Words

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The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen.
– Carl Ven

Suddenly I See

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Over the past couple of years I have seen so many people who have had big “stuck” and big dreams. And it has been so cool to watch them being stuck, working through their stuck, and then arriving at the place they thought they’d never ever get to.

And at the same time, I’ve been feeling kind of sad about myself. I know that comparing myself to others makes me feel sh*tty. And I know that I can’t compare my insides to anyone else’s outsides. And I know that I don’t know what’s going on for all those people, what they’ve gone through, where they are now. But it’s still hard.

AND, I feel frustrated because even though I know that I do tons of stuff, and have worked through tons of stuff, it’s not anything that most people see. I’m not trying to “grow a business”, or figure out how to make (more) money, or do some giant, soon-to-be public creative project. And it’s not anything that, say, I could write about in a Christmas newsletter. And that is hard sometimes, especially when I see someone I’ve know for a while get something they’ve really wanted. It’s hard not to be in a place of public achievements right now. It’s hard to be almost the only witness to myself and what I do.

But when I ask myself, I don’t really come up with anything I’d like to do that I’m not doing. I don’t feel like there are things I want that I’m not getting to have. And I’m not feeling like being out in public doing things. Quite the opposite, actually.

This is (and has been) a time of turning inward for me. I’m learning how to take care of myself. I’m learning how to ask for help. I’m learning how to receive help. I’m learning how to be interdependent.

I’m learning how to acknowledge and live within my limits.

I’m learning how to still be me, and still thrive, and still have an everyday life I love EVEN WITH chronic pain and chronic illness.

I’m learning how to be in relationships with all the changes these circumstances have forced on me/us.

I’m learning how to actually live in now-moments. I’m learning how to be here, even though “here” frequently hurts like a m*&^%$-f!@#$%r.

I’m learning how to live in a place of both/and, as in, “I am having a 10 pain day, AND I’m grateful for the sunny weather.

I’m learning how to take advantage of things like the Internet in order to have an outlet for my creative expression, as well as have a way that I can stay connected to people that works with how/where/who I am now.

I’m still taking classes. I’m still trying new things.

I’m still contributing to our household and our life together, just in different ways and at a different capacity.

I’m STILL FUNNY-I still have my sense of humor, and can find the funny in my circumstances, AND write funny stories about them on my blog.

I still take care of my husband and my cats and our home.

I actually do have an everyday life that I really love.

I am still walking my spiritual path. I am still working on myself.

I’m learning how to release treating myself as though I only have value to life and to other people if I DO. I’m learning to see the value I have by simply existing here, and being in other people’s lives.

We’ve figured out how to organize things financially so that we’re ok with my not working.

I have learned how to educate the people around me on how to communicate with me, and how to help me in ways that actually help me.

Hm. When I look at things this way, it appears that I have, in fact, created an entirely new world for myself and the people around me.

Wow.

Apparently I really do have magical superpowers.

Nice.

Stuff: I Haz It. A Cool Title-Not So Much

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I have the great, good fortune of being a student of Havi Brooks as one of the members of her Kitchen Table program. And underlying everything we do there, the skill we are all learning and trying our best to practice is the ability to meet ourselves and our “stuff”-whatever it is, and wherever we are-with kindness and compassion. We also talk a lot about how our relationship to one area of our life is a mirror of our relationship to all the other parts of our lives.

For example, I have identified a number of personal patterns that I am working on, and I can see how they show up all over my life. I am driven to hoard. I go back and forth between depriving myself and binging. I have a fear of there not being enough. And this stuff comes up for me repeatedly: in my relationship with food; in my relationship with money; even in something as simple as my relationship to books.

The good thing about this inter-relatedness is that if, say, my relationship with money is too scary to look at right now, then I can go to something more neutral, like my relationship to books, to do some work on these patterns. And the destuckifying** I do there will spill over into those other, scarier areas.

The bad thing is that, now that I’ve been doing this kind of self-inquiry for so long, when I feel things like resistance, being triggered, anxiety, or the like, I can no longer pretend that I have no idea what’s going on and find something (or someone) external to blame it on.

Stoopid self-awareness.

I’ve been thinking about this a lot lately, because nowhere is this stuff as real, or as challenging, for me as it is here, in my relationship with this blog. I often feel like there’s been some kind of fundamental stuckness here, and I’ve been slowly working my way through it over the past 5 1/2 years.

Lately it’s been taking the form of feeling really stalled out-in every area-because I’ve been pretty sick lately, and whenever that happens I start wondering about the questions of my identity and my existence (and the justification thereof).

One area in which these issues have been triggered is in the fact that my husband’s been home on vacation for the past two weeks, and while I have really enjoyed the opportunity to spend time with him, watching him attack a billion projects around the house has really made me feel my severely diminished capacity to do things. For example, housework used to be a breeze for me. I could clean the whole house in a day or two over the weekend. But now, it frequently takes me all day JUST to do the dishes (whereas my husband can whip out an entire clean kitchen in 15-20 minutes). And in my pre-sickness era, even when I felt like I hadn’t done anything else productive during the day, I could always fall back on my role of maker-of-the-home. But not anymore. (Hello, pattern of comparison, that never fails to make me feel totally shitty about myself.)

And then there are so many days where I can’t do anything at all, which of course makes me ask myself things like, “So is this really all there is to my life now-just managing pain?” or, “Well, why am I even here then if all I’m doing is being a burdensome sick person in all these people’s lives?” (And, hello patterns of linking my identity and right to exist on this earth to my ability to DO-fancy meeting you here.)

So I really struggle with the questions of, “Can I allow myself to believe that I am allowed to be here in this world just ‘cuz, and that people still value having me in their lives even though I’m sick?”  Sometimes. And then sometimes I just can’t.

So today, for some reason, things finally clicked for me and I realized that these questions are a huge part of the reason that I get stuck in my relationship to this blog. Because I’ve spent so long thinking that I had to come up with some kind of snappy, all-encompassing, highly marketable identity for myself as a writer/blogger, and that the only reason I can dare be so presumptuous as to suggest to people that they read my stuff is that I justify this blog’s existence by providing entertainment for people (ALSO a pattern that shows up in other places for me), or as I call it, being a “tap-dancing bear.”

And then the struggle sets in because it is physically impossible for me to fit into some sort of snappy, all-encompassing, highly marketable identity for myself, because if there is any phrase that truly defines who I am at my core, it is this:

Professional Free Spirit.

And sometimes there is entertainment in that. But a lot of times there isn’t.

And so once I finally admitted this to myself, I realized that underneath all of my “stuff” surrounding my blog are questions like, “Is it I presumptuous to think that I and my life are worthy of being put out here in public? Do I dare ask people to come here and read what I write without offering some kind of justification of my online existence (like constant entertainment?) Am I being like those people on all those reality TV shows who think that they are really worth having people follow their entire lives, when really they are just delusional and embarrassing? Do I really think that I have something to offer here, something that is worth people’s time and attention? Can I allow myself to believe that I am allowed to say to people, ‘Hey-come look at me. I’m worth listening to.’ Just ‘cuz?”

Sometimes.

And maybe, for right now, sometimes is enough.

**term courtesy of Havi Brooks, Pirate Queen