The Good, The Bad and The Ugly

The Good:  When you have a chronic condition or your level of function is diminished good days are few and far between, but when you do have one you may, like me, have a tendency to over do it.  It has been weeks, even months, since I have been able to feel like I've accomplished anything of worth in a day, until about a week ago.  On Halloween both of my parents were at work and my younger siblings (18 year old sister and a 13 year old brother) had the day off of school due to parent teacher conferences.  I wanted my mom to come home to a clean house after her long day of work.  I have the desire to clean the house almost every day but my body hasn't let me.  I love to clean, it's soothing for me, it helps me distress and feel like at least there is something in my life that I can organize.  So on this Halloween day I felt that same desire to clean but this time I was feeling at least up to delegating chores to my siblings and cleaning the kitchen myself.  I made a list of jobs and even though I wasn't able to finish all of them and also passed out several times during the day, I felt accomplished.  I felt good, happy, useful and most of all hopeful that things were looking up.  I even curled my hair and put on make up!

The Bad:  So along with the high of having a good day there is the inevitable crash when things go back to "normal".  November 1st was that day.  I had had a day to feel semi functional and then it was taken away from me as I had worked myself too hard and tired myself out the day before.  Tears followed after trying to do the simplest of things, almost as if the hope of yesterday was torn out of my hands and replaced with reality.  On these days I find myself almost giving up.  Not so much giving up on life, but giving up on that day, along with a promise to myself to try again tomorrow.  Some days I lose the will to fight the never ending storm of trials that awaits me when I wake in the morning.  I tier of the fight and for that one day I lose the battle, but not the war.

The Ugly:  Another thing I've been dealing with this month is not feeling pretty.  Its hard to feel pretty when wear yoga pants and t-shirts with no make up everyday.  I know what you're thinking, just wear something else and put on make up.  The solution may not be that simple.  When you look in the mirror you expect to see a certain image of yourself but the reflection that looks back at me is almost a stranger.  She looks sad; with her darken circles around her eyes, and skin pale and yellowish instead of the olive color it used to be, and the complete lack of muscle from her body from not being able to run or work out.

     I've grown more accustom to this new version of myself, but I don't plan on getting used to it.  Today I'm not giving up.  I'm fighting for my right to having some quality of life.  I'm fighting for a future me that can clean, work, run and do whatever else I find out that I like to do.  That being said, I've struggled to come to a place where I know that I can not fix this alone and I may just have to let it be for now.  Its an overwhelming thought sometimes, but thats when I can turn to the lyrics of The Beatles and know that "there will be an answer, let it be".

Let It Be by The Beatles

Cover by Michelle Cutler

ER Visit

I don't often like to share negative experiences, especially about my health, on forms of social media.  But today I had a more uplifting take on an ER visit I had had yesterday and wanted to share it through a picture I took of my ring I wear always that is engraved with the word HOPE on it.  I had gone to the ER after finally giving into my mother pleading with me to go because of all the fainting I was experiencing daily (8 to 10 times to be more precise).  I have a very hard time being willing to seek medical care because of how many times over the course of the last ten years that I have turned to doctors for help and been told to go home because it's all in my head.  Being told that you're making something up that is so painful and debilitating to your life is hard to hear over and over again.  For many years I have told myself that if I act like a normal person, do the things a normal person my age would do, like get a job and go to school, that I would in turn be normal.  But the truth of the matter is I am not normal.  I never have been.  All through grade school, middle school and the majority in high school I was chronically ill, missing months at a time up until my senior year when they finally got tired of it and kicked me out.  I did graduate high school, but I missed out on so many things that kids get to do.  Sometimes I wonder if my social skills are up to par with everyone else's.  Am I no better at socializing then a home schooled kid (no offense to anyone who home schools their children)?  I wonder if I'm coming off as awkward as I feel or if everyone is as insecure as I am.  I wonder what it would have been like to go to prom and actually attend school with my friends.  There are so many things I think I've missed out on in the last decade of my life and it makes me wonder what it would feel like to run and not pass out; to go hiking and not faint; to go out to eat at a restaurant and not get sick.  Is that what it feels like to be normal?  And when I truly think about it, I don't want to be “normal”.  Yes I want to be healthy and do all those things, but I have learned a lot that I wouldn't have learned in a classroom anywhere.  I do want to move on to the next chapter of my life and hopeful that chapter includes better health but more importantly I want it to be what God has planned out for me.  Which brings me back to the ER visit.  After sitting there all day, passing out at the start of the IV, after taking a gulp of juice, after standing up, and also for no reason at all, and then still being told to go home and just deal with it, I felt okay.  Yes it felt crummy to hear it again, plus the day had been long and miserable, filled with tests and migraines but I was okay because I have hope.  It was so relieving to know I still had hope that God would see me through another day, just as He has done every day, the good ones and especially the bad.  I thought I would share this message of hope with a picture of my ring on Facebook with the caption “After a discouraging and hard day at the ER yesterday, I slipped my rings back on and was reminded...there is always HOPE.  Hope that tomorrow is better and since today is yesterday's tomorrow I've already been proven right because today is better, I'm not in the ER with an IV and that's better enough for me:)”.  Underneath the caption was a picture of my ring on my finger in a photo I had edited to say “Never Loose Your HOPE”.  I shared this with my little circle of friends because I wanted to focus on the positive and not on the negative of that visit.  I wanted to remind myself by telling someone else.  I was surprised and very touched by the out pouring of love I received following the status update.  I had wondered if I should even share it because I don't like looking like I'm fishing for attention or coming off with a very “woe is me” attitude.  People were so sweet with their responses, wondering what they could do to help and did I need dinner to be brought to me and my family for a few days.  All of that also reminded me that not only am I not alone because I have God on my side, I'm not alone because people are generally loving, caring, good human beings willing to lend a hand or shoulder to cry on when one is needed.    

Marks of Imperfection

     In general, our eyes are used to observe and perceive, but not until recently have I become acutely aware of the fact that what our eyes take in may not be what is actually all there.  Let me further explain.  Since I can only speak for myself, that is just what I will do and therefore I'll also use myself as an example for my explanation.  
     When my eyes "observe" myself I see: wide hips, un-proportioned to my upper half, only intensified by my short stature; knocked knees and white stretch marks, from being heavyset during my middle school days.  I see a scar on my neck, from a hole I was born with, that many have taken for a hicky.  In profile, my nose has a distinct bump in it making it crooked and my facial features are very sharp, often coming off stern and angry.  I see short wide legs unfit to be seen in shorts.  I see imperfection.
     Why?  Why do I not see the other things?  The things I so dearly love about myself?  Through someone else's eyes I may observe: Long, healthy, soft to the touch, hair that requires little attention to be presentable for the day.  I may see striking, captivating eyes the colour of the blue sea framed by long black eyelashes.  I would see a ever so tiny waist, that could only be truly shown off by a specifically tailored dress.  I may venture to say that I would see beauty.
     What makes me this way you may ask?  Should I blame the kids in middle school who may have teased me or the boys who have said hurtful things in moments of thoughtlessness? Or should I blame society for giving girls an impossible standard for what is deemed beautiful?  No, the blame should be shifted to no one.  Though all of those things have played a part in the way I see myself, putting blame somewhere will not fix the way we (I guess I should say I because I said I could only speak for myself haha) perceive ourselves. 
     Maybe our marks of imperfection are what make us perfect in the grand scheme of things.  We are all perfectly imperfect.  And isn't that an equalizing thought?