The Truth About Pots…

“How do you feel he asked?”  I looked at him with eyes wide open.  Words would not come out of my mouth.  I had plenty to say!  So much in fact, I barely slept the night before because I wanted to make sure I articulated EXACTLY how I was doing.  Yet there I sat, mouth open, eyes staring at him, and nothing.  I finally was able to say, “Do you REALLY want to know how I feel?” In my mind I was thinking, “I feel worse than I did last year, but better than two years ago.  I am at a stand still.  I am not seeing any progress, but I am not regressing quickly either.  I have learned how to cope better with indescribable symptoms.  I am in an amazing support group where I feel normal.  They get me.  They understand how some days my only goal is to get a shower.  And they understand it is not because I am lazy, but because I am highly driven to even make it that far.  They understand the day to day grind of living chronically ill”.  But instead of saying what was on my mind, I so eloquently said, “Well, I just feel like a piece of crap.”

Thankfully, I have a doctor who can read between the lines.  He looks at me first and then my blood work.  He sees past the blank stares and my inability to answer in full sentences sometimes.  He is a dream doctor most chronically ill patients would die to have and I am fully aware of this.  Why am I sharing this story?  I know I am not alone.  I know I am not the only Pots patient who is struggling to move forward and finding themselves stuck.

I am functioning at a higher level than before. But as I function daily, I am constantly reminded of my weaknesses.  My brain frustrates me to no end.  How can someone find themselves unable to do any critical thinking most days when they have been able to do so their entire life?  I read and re-read everything and still find I retain very little.  Simple tasks are not simple.  They are overwhelming.  While feeling so overwhelmed, I also find myself confused.  What happened to me?  Where did I go?

Don’t get me wrong, I actually have a beautiful life.  Two healthy children, an amazing and supportive husband, a family that will do whatever needs to be done to make my life a little easier, but nothing takes the place of true health.  I have everything and yet I have  moments where I feel I have nothing.  I am a person of faith.  So, in my heart I know that this thinking is not true. Yet I have found you can have the world at your finger tips, and without your health, enjoying most anything takes great effort and planning.  My faith is what has brought me this far, and I believe it will be what leads me forward.

Here’s why…Pots may steal quality of life many days for me, but it cannot steal my hope.  Pots may keep me in bed for days or weeks at a time, but it cannot dictate my attitude or my will.  Pots may bring moments of fear and anxiety into my mind as I contemplate the future, but Pots does not have the power to control my future.  It may change the direction of my journey at times, but I am finding life in those areas where I believed to be inhabitable.  Do I want to build a life in this space? No!  Will I choose to live life in this season?  You better believe it!

If you are like me and are weary and physically worn down, do not allow your circumstances to define your life.  Yes, we cannot hide the fact we are sick.  We cannot pretend this isn’t a part of our daily lives.  But, we can step up and say, “Ok…now what?”  For me, it was starting a career directly from home.  For you, it may be something completely different.  I am doing something I would have never dreamed I would be doing.  And guess what? I love it!  I think we can become so focused on what we are unable to do that we miss the new opportunities ahead.  Maybe it is not a part of your ten or twenty year plan.  I say change your plan!  I read something that said, “If you don’t like where you are, MOVE, you are not a tree!”

We cannot allow ourselves to be paralyzed by all the limitations we face, but rather open our hearts to new dreams, new goals, and new ideas.  It’s our choice.  We can stay stuck in the valley of “I Cant”, or we can choose to atleast open our hearts and minds to something new.  Yes, it is scary. But I would rather be a little scared, than stay stuck in the valley of indecision and bitterness.  I encourage you today to look past what you thought your life should look like, and embrace the life you have been given.  It is a gift that can go unopened if we don’t allow ourselves to embrace today.  Don’t let the opportunity of this life to pass you by.

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