Chronic Illness · Coping Tools · CRPS/RSD

Who is this body?

battle1“Do one thing, every day that scares you”- Eleanor Roosevelt.  I thought about this quote this morning as I woke up excited yet nervous about the week of returning to work after a 2 month medical leave.   “This was it!” I thought, “This is the week that I will work all the kinks out and get back to me. The Social Worker Me.  Ya know, the one I spent all of those student loans on.”  I set my goals at making it through 2pm and then allowing myself to come home and rest.  I thought I was being kind & realistic to myself.  Physical Therapy was the first thing on the agenda for this Monday morning. I did the usual warming up on the bike and some range of motion strengthening exercises. It wasn’t the most difficult PT session as most of the time we discussed swelling, CRPS and tried new Kinesio Taping method. I didn’t even think twice about it as I walked out to my car to head to work.  I was just thinking about the next 5 glorious hours of being Professional Me, the me that was not sick.

And then it hit me. A ton of bricks. A mack truck. A train out of nowhere. Pain flooded my body and my nervous system was engulfed in flames. I was less than a mile from my house and for a moment I honestly didn’t know how I was going to drive the short distance to my front door. I blinked hard, forcing the pain to stand at bay while I made every conscious fiber in my being take me back home.

I was now in survival mode. Flight or fight & I had no strength to do either. I crawled at a slow pace to my bed.  Jealous.  Jealous of everyone that was able to get to work on a Monday.  Angry.  Why was this happening?  Confused. What was the trigger?

Who is this Body????

This is extremely frustrating as I know my body so well. I meditate every day. I continuously scan my body for pain so I can plan the next steps of my day. I know my pain and I usually know where the line is.  However recently that line has begun to shift. CRPS is like an unexpected landmine. Ready to blow up without any warning and destroy any plans that were made for the day. How do you live with something like that? How do you build a life around a landmine? How can I be me when I don’t know how long me will last on any given day?

Over the last 8 weeks I have dedicated my life to healing.  I have taken this body out of the depths of hell and to a place where I could actually breathe.  I spent hours in the pool, pushing through more pain than anyone should ever have to feel.  I worked with this body to get it strong enough to climb stairs.  I wrapped myself in compassion everyday and told myself I was doing the best I could. I returned to work last week only to find I wasn’t ready like my medical team thought I would be.  My mind, spirit and heart were ready to be back at my job but my body was not.

I was confused.  How could my body not get on board with this plan?  I had spent the last 2 months carefully training for this exact moment.  We were suppose to be a team.  Why did it feel that we were in a war against each other???

My Body was letting me down. 

Today was the final straw.  All of the willpower and positive thinking lay on the sidelines as I let anger build in the presence of pain.  “I AM IN CONTROL!” I screamed in my head, “You don’t get to decide that we are done. I am not ready to be done.”

But it had already decided.  We were no longer on the same team.

Imagine waking up and having a different body everyday.

photo curtesy of pixabay

This is how I live most days.  Will it allow you to walk through the pharmacy? To run an errand?  Even make your bed?  Most days it rebels as if it were a toddler having a temper tantrum.  A body who screams at you in pain when you pursue your goals or attempt to enjoy life.  How can you work with something that acts like a maniac???  In life we have the choice to walk away from abusive relationships and people who don’t treat us well but what happens if this is the skin that you live in?

Well that’s me.  That’s my body.   A body who is unbelievably unreliable. My body is a maniac.  Every day as the pain rises above the useless 10 point scale, I hold back tears and tell myself   “I can do this.  I have been through tougher days.”  But lately they are lies as each day is more increasingly difficult than the last.   Being me shouldn’t be this hard. Why is my body abandoning me just as I am getting to the perks of my career?  Doesn’t it know how important this is to me?  To us???

a photo of myself, look off to the right looking sad.
I just want to be me. All of me.

Even with dedicating the last 8 weeks to Physical Therapy, today I am feeling as if I ran a marathon with no training.  Uphill.  In the snow. With no shoes on. I know that in reality those 8 weeks have made a HUGE difference in my life.  I cannot imagine the pain and agony that I would be in if I had not allowed my body the space to heal & strengthen.

However, the intense physical therapy training crumbled as I pushed my tired & pained body across an invisible line this past week.  A line that my body was not ready for.  I did what everyone in chronic pain does, I pushed on with positive intentions hoping for the best. I ignored warning signs. I hushed my body when it said it was tired.  I expected that it would give up the rebellion and just jump on board to get us through this month.  But that is not the body that I have anymore.  I am no longer in control.

This Body is the Boss of me.

I don’t want to be at war with my body for the rest of my life.  I don’t want to trade a compassionate caring relationship for a dictatorship.  I want to work with my body.  I want to calm the chaos.  Settle the nervous system and diminish the pain.  I want to live in peace with her, not in anger.    This most likely will take a lifetime and many expensive therapy sessions.  So today, I fold. What my body needs now is understanding to it’s madness & inconsistencies.  With CRPS our body changes every day, every hour.  What I could 2 months ago, I am cannot do today. What my brain wants so badly to do, my body cannot tag along.

As I stare at the blinking curser on this page, I have no idea what the future holds.  I am honestly too exhausted from being sick to even think about it. I need a vacation, a respite from my own body but that is not possible.  I am stuck here in a place of pain and disappointment.  I have a death grip on my career because I am so afraid of losing it to this disease.  I feel that my only choice is to continue to love my body despite the chaos that runs deep and as always hope for the best.  That tomorrow is the day that I get to be me.

Much Metta  (loving-kindness),




8 thoughts on “Who is this body?

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