Wednesday, October 29, 2014

On Control

Betrayal, duplicity, loss, jealousy, insecurity. Sounds like a soap opera, right? But those adjectives are just a handful I use to describe the many shades of complexities between my own damn body and me. I should, as an aware and intelligent woman, be in the throes of the greatest corporeal love affair in the history of my existence between my own skin and me. Not so. It's more like we're on Maury and everything that's been assembled to make me human is just one giant lie. My body has tricked me into thinking that it's on my side yet over and over again it attacks me - destroying my trust in it to do anything remotely beneficial.

So how do I wrangle it back to my side? Work with me instead of against me? Magically re-route messages from my brain to every part of my body away from all of the "road closed" signs it continually encounters? God, I wish I knew...

I remember reading a few years back about how some people who have food addictions and then successfully lose weight via gastric bypass or similar procedures find other ways to realize their compulsions: drinking, drugs, gambling, sex, shopping. It's all up for grabs, until you can get to the root of whatever issue driving you to fill whatever hole food used to fill.

It some ways, I have a very similar struggle. I am looking for control over something I've all but surrendered to. I take my prescribed drugs, go to the gym for strength training, try my hardest to pace my days out, eat right, "accept the things I cannot change" blah blah blah. But apparently that's not enough.

Yes, I was a fat kid. And a fat adult. That is no news flash. When I say this to friends, the general response is, "well, I never saw it". That's either a) being really sweet to me or b) having been that way for so long, it was just who I was. How someone could never see 180 pounds on a 5' 5" frame is no small wonder to me. My wedding dress was a size 16, after all. According to this website, I believe this to be an accurate idea of what I looked like about fourteen years ago. In fact (duh), here's  picture of my husband and I four months before we were married:

So, through various attempts over the years with varying degrees of success, I've lost a total of 55 lbs. Impressive? Sure. But I still feel the same. I feel the heft - my arms look huge to me, my thighs seem to have retained their shape and I swear can feel my tummy wiggle and wobble with every step I take. Weight loss does not solve body image issues. I hate my body  inside and out.  Let's be frank.  Is this what I see when I look in the mirror?  Or again, a real life "after" (at 122):

In short: no. In fact I see quite the opposite. Last year I went on an autoimmune Paleo bender in an effort to "heal my leaky gut" and rid my body of all of the things that were causing it to fight against itself . That protocol is even more strict than the "normal" Paleo protocol. I sank down to 118 and was told by my doctor to stop losing weight. I had no control over it, it just fell right off. Friends and family were telling me I was too thin, their remarks tinged with concern. I didn't take those comments with any gravity. Honestly I reveled in it. The number on the scale was a giant middle finger to my body. You think you can control me?! Look at what I did, all on my own! I loved it. I was hopelessly thin and felt triumphant. It was a though I had finally reached some summit I failed to scale time and time again. Others told me I looked great - lean, fit. Those compliments quickly took precedence over the other comments.

This didn't last. How could it? A girl needs to eat. I proceeded to fall into an easy obsession with numbers. I chose to settle on a range of 120-125. Anything above the latter is now cause for panic. 126 = protein, veg and fruit only. No carbs (even gluten free ones as per my 2009 dietary revision), no alcohol, no fun. I work harder at the gym. But I need to qualify my  "workouts" (and I use that word loosely). It's a physical therapy routine - purely strength training with modest weights and zero cardio. I can't do both or if I do I have to count myself out of additional workouts for the remainder of the week just to recover from my efforts. I should also mention that my attempts at cardio are hapless and very precarious. Here's an image that immediately comes to mind:

Let's factor in a few more things.  My mother's side of the family is Italian.  Growing up, every event - success or failure, was celebrated/acknowledged with food. I still feel the urge to console or congratulate myself at every spectrum of an "event" throughout my day to day happenings: a cocktail here, some chocolate there, you name it.  I have zero willpower.  I am not pigeonholing myself into a Cathy comic. But it sure sounds like I am.

How do I gracefully settle into a number when nothing else gives me satisfaction in the midst of harsh realities of losses I've endured over the years?  I fully accept that this is bordering on eating disorder territory. But I don't starve myself - I eat! A lot! I can't/won't ever become bulimic. The thought of throwing up what I just ate grosses me out. My husband has loved me at every size so it's not about that; I don't love myself at every size. I have confidence. I don't think I'm terribly unattractive. At 37 I've finally waded through all of the guilt of my religious upbringing and fully embraced my sexuality as a woman and a wife. There's another level of acceptance here that is somewhere too deep for me to dig my way to.

"Life's too short."

"Everything in moderation."

Oh yeah, those are great sayings. They should totally apply to me. I just can't do it.  I would be remiss in not chalking it up to some degree of being a woman who's been subjected to photo shopped bodies and unattainable body types for years. But sadly, that's only a tiny slice of the body image pie for me. It's way more complicated than that. And I feel as though I should add that this is not an attempt to garner compliments or praise about my weight loss, or the like. But I will take any magic pills or suggestions that might help me start to feel okay about my body. Hating it so violently and for so long can't be a good thing.

Wednesday, September 17, 2014

There are perks, too

So I've been doing a lot of boo-hooing lately and I think it's time to snap out of it.  Let's put aside the chronic-illness-legs-don't-work-everything-sucks mindset and talk about the perks and the weird, fascinating, interesting phenomena that accompany this diagnosis.

1. Clonus Reflex (not me in the video, by the way)
What's that you ask? Well I can't really fidget anymore. But, if a certain part of the ball of my foot hits the floor, my leg(s) start to involuntarily bounce up and down. It's kind of fascinating. And if I move my feet just so in one direction, it immediately stops.

2. Hyperrefelexia (also not me; the man legs give it away)
Doctors have learned over the years to not sit on their lil' stools right in front of me when it's time to check my reflexes or they risk a kick in the nuts. It's funny to me. Is that bad?

3. Being virtually impervious to pain.
After 13 years of shots, IV infusions, blood draws, vaccines, urodynamic tests (note: not dynamic in any sense of the word), Botox in my butt (yes, really), I've built an impressive tolerance to pain. Eyebrow wax? Tattoos? Pssh. Child's play.

4. Random strangers apologizing to me
What are they sorry for? It's fun to imagine there's a giant conspiracy with a network of people personally responsible for my current state, ala Olivia in Fringe and the Cortexiphan trial she unwillingly took part in as a child. My imagination: kind of awesome. But seriously, stop apologizing to me unless it's really warranted.

5. Am I too drunk to walk straight? You'll never know.
Don't get me wrong; I'm a lightweight. When I'm sober, I already walk in such a way that implies otherwise. BUT, there's no way to stumble when you're seated in a scooter.  And no, asshole on your fourth Amstel Light, I can not "get a DUI on that thing". I can, however, run over your feet... on "accident".

6. Chivalry is not dead
Doors are opened, planes are pre-boarded, amusement park, security and check-in lines are faster because I can skip in front of all you able-bodied suckas. I am whisked up flights of stairs by burly men. Complete strangers carry my trays of food and move objects out of my path without me having to ask.  Not to mention primo seating at concerts and the best parking spaces. Basically, I'm VIP everywhere I go. Yes, you can be jealous if I can be jealous of your functioning legs. That's what fancy people call "quid pro quo".

Only six?!  Yeah, I haven't hit the lottery.  But those are pretty decent consolation prizes.  Hey, I'll take it.

I totally just thought of this.

7. All you suckers walking around wear the soles down on your shoes.  Not me!  Save for the few steps from my door to my car, my shoes virtually look brand new.  Ha!

Thursday, August 28, 2014

When your body betrays you

When your body betrays you, it's amazing how it can still break its own heart.

You know, I've dealt with this disease for 13 years and most of the time it just is what it is. About 6 or 7 years ago I remember falling and then I just stayed on the ground and cried - not for any broken bones or cuts and scrapes.  When my husband frantically asked me what was wrong, I simply said,
"I'm tired of it. I'm tired of all of it".

Without fail about once a year I go through a phase of being really, really fed up.

I don't want to put on a brave face.  I don't want to smile and pretend I'm okay.  I'm not.  This situation is so fucked up.  The day to day drudgery wears me down.  Just maintaining and keeping my head above water is overwhelming.

The never-ending list of upcoming doctor appointments.
Dragging myself to the gym twice a week and knowing that my legs are stronger but nothing improves.
Shoveling in a mouthful of medications and supplements.
The involuntary leg jerks that contort my whole body into an unattractive lurch and keep sleep just out of my reach.
Taking each step up to my front door with careful calculation and realizing we're going to need a ramp soon.
Simple acts like walking (read: dragging my feet) to the bathroom or getting a cup of coffee that require Herculean effort.
The shame that has accompanied all of the little losses over the years, things I used to be able to do but no longer can.  It's a laundry list.
Growing my hair out for 3 years and watching clumps of it come out in my hair brush thanks to the new drug I'm taking (Aubagio).
Saying no to things I want to do because I can't do them (too hot, too many steps, too tired to care).

Even going to a friend's house for dinner requires a choreographed routine of my husband carrying me up the stairs and then lugging my scooter inside where I hope to navigate around without nicking a door frame or bumping a bookcase.  And then I fear spiral and realize that my husband won't be able to carry me around forever.  It feels like it's never over and it can bury me if I'm not careful.

I have to allow myself to feel it all.  Otherwise I risk sinking into a comfortable slump of denial.  I don't remember how I used to move anymore.  I get jealous.  And I get so in "it" that I can't see past my own nose.

Then my husband, who is keen enough to see the road I'm going down, sends me this link. Something so ridiculous and hilarious and absurd that it snaps me right out of the wallowing and self pity I let myself fall into.

There's wisdom in that.  It's called perspective.  And then he gives me the best hug - wraps me up in all of his warmth and strength.  I start to feel like everything might be okay.  Maybe?

I will barrel through it.  I will go to the gym.  I will eat dinner.  I will watch tv.  I will go to bed.

I will wake up and start it all over again tomorrow.  And hope, always hope. It keeps spinning its wheels even when I'm not around to see it.