Sunday, October 4, 2015

So Very Brave

 


After 8 years of treatment for Lyme Disease, Bartonella, Babesia, Celiac Disease, MTHFR gene mutation, Multiple Chemical Sensitivity, Chronic Fatigue, and psoriasis, you start to come to a place of conflict.  You want to be normal 100% healthy.  But you realize after fighting with a broken body for so long that you can only get so far.  You get to 70% and say well at least I am this far.  I have worked really hard to get this far.  My Lyme Disease and Babesia no longer give me symptoms and my Celiac Disease is under control.  I still can't have candles in the house or stay in the cleaning section at the store for long.  I am always tired.  Doesn't matter what I do or don't do.  I am tired bottomline.  I don't remember a time when I didn't feel tired at this point.  I have been in pain or sick since age 8 and now at age 37 this whole broken body thing is a job I work at everyday and do my best to keep under wraps so I can live a life.  Or should I say HAVE A LIFE.  I can't help but feel I wasted my hopes.  I was suppose to be better long ago.  And have things happen by now that I always wished would happen like more kids, a career, a savings, etc. I worked so hard to get better for only 70% of a positive result.  I can't even begin to explain how heart breaking that is.  Not to mention all the dreams I had that are completely gone and wiped from the "possibly" list.  I am starting all over again at 37.  How the hell do you do that after so much effort was wasted on a still broken body?  Who in their right mind would work with 150% effert for a 70% result.  No body in their right mind would do that.  But that's the truth when you have late stage Lyme Disease.  When you catch it too late.  It leaves damage that no one can fix.  I can't get back the last 8 years of my life.  I want a freaking do over some days.  I have friends that talk about things they've done with their families, friends and kids in the past 10 years.  I have no idea what the hell they are talking about.  I've been on survival mode.  I wasn't living.  I wasn't grounded in life, my skin, my community.  How do you explain that to someone?  Sorry I can't relate, my life's been dedicated to getting my butt off the couch and praying I would at least make it to the door.  The loss of Lyme Disease is a depth of pain most patients can't express in words because its beyond mere words.  It permeates at the very depths of our personalities, how to act with others, how we approach the world, how we see ourselves and others, how to sense someones pain before they even mention a word, how we have depths of compassion that some may not even fathom, we've been down roads others would of fallen off by now.  Lyme Disease is truly heart breaking and to say its not would be a lie.  I have people ask me have I done this or that and all I can say NOPE.  Its so awkward.  Can you imagine literally not remembering your own personal experiences?  And when you do remember something its always centered around how sick you were.  Talk about isolating.  This is why Lyme Patients understand each other in depths and ways I cannot even explain.  I feel like I can rest when I am around my fellow warriors.  I hide in plain sight most times with healthy people.  I still have a hard time relating to normal people topics of interest or conversation.  I can be an advocate at the drop of a hat that's easy.  But being a more normal person is just weird.  I've been sick so long.  I don't know how to act semi-healthy.  Its a total mind bender.  I still get anxiety around groups of people, traveling, and large events.  I haven't been able to practice my normal people skills for 8 years.  I am a bit rusty!  And when you start to get comfortable with this new skin you are in and realize you can push it a bit, do things you haven't done in a while in the back of your mind your wondering when will I crash next.  That feeling never goes away.  Its like PTSD for the Lyme Patient.  I've heard several other's talk about this.  I also never really was healthy before Lyme Disease.  I've always had some level of pain and illness.  So I've felt that I never really had a chance to do normal people things and get a handle on it.  And I'm an introvert.  So I trust very few people with my fullest self.  I'm always waiting for a friendship to sour or end.  I've had too many people stop calling or leave.  I have tried to work on this but my health doesn't make it easy.  And when you feel sick you don't have any energy to deal with people on any level.  You doing everything you can to conserve what energy you have left to survive each day.  Chronic Illness/Invisible Illness is complicated and to say you understand would be not even cover what I have been through or what I feel.  Probably the most precious people to me just listen and ask questions with no judgement.  The listener's of this world, like me, always find a Listener rare.  We need more of those people in this world.  We forget in the rush of life that we are all messed up and doing our best to get through.  Just some of us fight harder in different areas.  I have no problem listening to someones story.  Its unique to them.  And I find their journey has highs and lows that shows their beauty.  I think we all feel broken on some level.  I guess this advocate just gets tired too.  And needs a place to rest.  I just wish that all the vision I had for myself in my 20s would come back again.  I have no more dreams or wishes or visions.  I don't dare.  I'm always waiting for Lyme Disease to get in the way.  We are daredevils each day.  Accomplishing simple tasks with creativity hoping we can pull it off without a big mess in the end.  Who would of thought that getting up and getting dressed would be daring.  It is when you have no clue how your day with go with an unpredictable illness.  Its brave to try to get up and live.  So very Brave.