Monday, July 03, 2017

How are you?

It's such a simple question and yet for me, it's not.  I think people ask this question out of politeness and traditional greeting but don't really want to know how I am.  My usual answers are "hanging in there" and "getting by day to day." Sometimes I will throw out the "I'm crappy" when I forget to slip on the mask and show some of the misery that is my everyday.  Maybe I just need notecards to hand people when they ask that dreaded question. How am I?  Do they really want to know?  I mean really?

That I've not only hit rock bottom, but that their are 200 lb weights around my ankles, holding me there.  Every morning I wake up and catalog the aches and pains.  Nausea? Yep, hopefully I can get through my pills and a few bites of my breakfast biscuit.  Feet pain? Yep. I can barely walk but I manage to limp to the bathroom and go sit in my chair.  That takes a long time because well, sometimes when I stand up, I pass out because my body can't regulate itself. Kind of a 50/50 kind of thing, will I stand or won't I. Just getting to the chair is a huge accomplishment for me, but if I told people that they would probably look at me like I had two heads or something.  By the time I sit down I am completely out of breath and have sweat pouring down my face. (My body doesn't regulate temperature either.)  I guess it's a win though, I didn't have to go to the ER with yet another concussion. Yay, for me!

I don't like mirrors, in fact it's more of a hatred, loathing kind of relationship now a days.  It wasn't always like that though.  There used to be hope and a certain spark inside my eyes instead of this empty and defeated blank stare that greets me now.  She is nothing but a shell of the charismatic woman she used to be. She used to smile and laugh, put on a little make-up, do her hair.  It crushes my spirit to see me like this, so if you see my hair looking a bit dishelved, blame the mirror.  A shower is a luxury that I can't afford most days.  A shower seems so mundane, but it's a project for me and I am usually done for the rest of the day.  Somedays I wonder what it would feel like to just lay back in a bubble bath, but we have a itty bitty square shower that I can barely move around in, but hey I am thankful that it has a toilet so we don't have to run upstairs to use the latrine (that's what my army son calls it...and it kind of stuck)

But I digress...Where was I? Yes, get to the chair barely in time for Johnny's call, and you guessed it, asking how I am doing.  At least with him I don't have to paste on the usual mask though.  I say, stomach, feet, bladder, dizzy, head and he gets it.  There is only a handfull of people that can read me like that.  I try to forget life for a while on the computer, and it actually works for a little while until another phone call, this one from the dreaded collection agency.  A bitter laugh escapes me because if they only knew how much I owed hospitals, radiology, doctors, laboratories, specialists and other various doctors, they would put a label on my account that said "Not a chance."  We live in my father in law's basement, I get around $800 a month and guess how much goes to insurance?  $400 + (I forget the exact figure but it's a good bit over)   Yep, 400 bucks for just me and some people ask why I hate Obamacare. And the kicker....it doesn't even cover me for everything. Ok, enough politics...

I hate seeing peopIe, even being around them because this mask is heavy and it takes a heavy toll on me. Everytime I peel it off a piece of me comes off with it. I am bitter and I try so hard not to be, I really do. I feel like I am in jail, a comfortable one, but a jail just the same.  I see steps that look like Mt Everest, and for me, they are.  I really try to think of those less fortunate, because there is always someone worse off and it helps for a little while.  Then something reminds me of my current situation and I get depressed again.  I feel lost, like the world is spinning around me and all I can do is watch.

To this day, I still wonder how my husband and parents have stuck around for 25 years of this.  Probably the same way I have...faith and unconditional love.  Well the brain fog (another fun aspect to Dysautonomia) is starting to set in and I am having trouble getting my thoughts together, but let me leave you with one last thing.                                                                                                                                                                                                                                                                     Think about the question "How are you?" from a person suffering chronic illness' perspective and perhaps you will understand why we hate those three little words.