PART 1: What's it REALLY like to be severely chronically ill? -Control

PART 1 OF SERIES:  What's it REALLY like to be severely chronically ill?

I've fielded a few questions in the past from people who honestly wanted to know...what it was REALLY like to be sick 24-7.  I guess it has taken me a long time to be able to answer that question for myself.   I have known several friends and acquaintances who suffer from some sort of severe chronic illness.  I've watched either close up or from a distance how their lives have changed, and how they dealt with the unexpected journey.  While most folks will go through life with some aches and pains, very few of you will ever have to live a life altered by a real debilitating illness.  It's a territory that most of us 'younger' people probably have given little to no thought to in the past.

I couldn't have even FATHOMED in my wildest dreams that after just celebrating my 37th birthday, I would become chronically ill.  It wasn't in my 'plan' or even on my radar.  Like many of you, I had most of my pathway all paved with what I thought my future would hold.  I was a very active mom of 3, married to the man of my dreams, and living out my own paradise that I had so thoughtfully executed.  I had a core belief system, many friends and activities that I loved, and lots of busy buttons that I would proudly display on my 'busy life' bulletin board.  My priorities were those that I had deemed worthy of my precious time and effort.  My spiritual walk was one that had been tested and appeared tried and true.  I surrounded myself with those people who made me smile or were often 'like minded'.  I must say, though, I rarely took much for granted.  I truly did love my family, my life, and tried to live most days to the fullest.  (Thank God!!!!  Cause, I would probably be riddled with a plethora of regret, now.)

I'm approaching the 3 year mark this coming March 2014.  My disease process has settled in, and I'm now much more familiar with what to expect.  The first year and half was such a complete roller coaster, that I didn't know from week to week what the day would hold, or if I would make a full recovery.  I was living each day in confusion, frustration, and uncertainty.  Now, I have a lot more understanding of what's happening inside my body.  While there is still quite a bit of uncertainty, there is more of a constant in my life.  I'm constantly sick now 24-7 without the guess work of maybe today is the day it all goes away.  I can probably answer better, now, what is it really like to be chronically ill?

CONTROL:
So many things happen to someone who goes from being healthy to sick overnight or even if the process was more gradual.  It's a daily balancing act to not lose yourself.  For me, it was the loss of control.  As a former 'control freak' .....the loss of control over my life and my body was earth shattering.  It was probably the most difficult for me, personally.  It not only shook my security, but it stole my spontaneity.  Everything around me had changed beyond my control.  It was frightening, to say the least!  There was no longer anything secure or constant around me that I had put in place, except for the fact that I would wake up sick the next day.  I suddenly became afraid of 'change', because change to me now meant something unpleasant.
I was secretly terrified of any new things or, heaven forbid, something to look forward to.  I'd learned my lesson, well.  If I wanted to go out, attend an event, or plan something....my body was more than likely not going to cooperate.  This in itself was daunting, not to mention the fact, that my inability to participate could or would disappoint someone or ruin another event.  I won't say this has gotten much better, because as a parent, you will automatically feel guilt for ruining a planned outing.  However, I've gotten much better about accepting the fact that planning is no longer up to me!  I wish I could say it gave me a sense of relief not to have to be a 'planner', but that is just not the case.  There is something very secure about being able to know what to expect and when to expect it.  It's been a good lesson, however, in learning to bob and weave at the balls that life is throwing.  I've never been one to 'fall apart' in face of adversity, but I will say learning how to react to the unexpected is a daily juggling act.  I have seen that my children have grown quite a bit from just that one concept.  I guess it's a life lesson they got to learn very early.  (always a silver lining)
My best coping mechanism for 'control' has been acceptance that things will change and they will be beyond my control.  And to try to keep things around me as constant and as safe and secure as possible.  This could be as simple as a daily routine, preparing the family in advance that I will not be attending something, or slowly adjusting to any new change that will occur.  Magic cure?  Not by a long shot...but being afraid of change is NOT an option here!

Many of these things are me being....QUITE real, vulnerable, and intimate.  However, what we deal with in life is nothing less.  I'm laying it all out there in hopes that someone...somewhere....hopefully in a much less difficult circumstance than myself can grab life by the horns and ride it in the wind without looking back...and most importantly WITH NO REGRETS!

I will be writing more about the many 'changes' and the coping mechanisms we have learned along the way when dealing with what's it REALLY like to be chronically ill.

Other topics to come in dealing with chronically illness and the following issues:
FRIENDSHIPS
LONELINESS
SPIRITUAL
TOLERANCE & EMPATHY
PARENTING
JOY
GUILT
MARRIAGE
BUCKET LISTS
DENIAL vs FAITH
ACCEPTANCE vs GIVING UP