Diagnosis to Freedom... It's a Process

Pain.  You try to take over my whole life.  You singe my skin with your flare.  The more I am afraid of you, the more I think about you.  The more I think about you, the more I hurt.  The more I hurt, the sadder I become.  The sadder I become, the more my family is stressed.  The more my family is stressed, the more guilty I feel.  The more guilty I feel, the more I can't imagine living another day.  When I can't imagine living this life, I remember the day I fell.  When I remember the day I fell, I wish I had been more careful.  If I had been more careful, would I never have had RSD?

This was my thought wheel at times for the first year of RSD.  It was behind everything I set forward to do... running in the background. Not all at once, but surely it was affecting my home, my outlook, and my life. If I had never stepped on that chair...why did I not get a ladder. I could smile, I "looked good"... and I was determined to hold my head high and hide the fear, thinking it would go away. This was Stage one.  I just didn't know it.

WHEN DIAGNOSED WITH AN ILLNESS.. THERE IS A NATURAL GRIEF PROCESS.

You may have heard this before, but it is a helpful tool.  You may go in and out of any of these stages... there is no way around, but through.  My faith and belief that Pain did not have to take over my life, that it Could be on the back burner, that we CAN create the life we want even with an illness... and we CAN be freed from illness no matter what it is.  

Freedom to me means ... I am not controlled by my fear. I tell all those in my group: Take care of your mind, spirit and body.  Submit your fears up to the heavens... take your peace (as my husband reminds me gently still).  We are a work in progress... but this diagnosis is not the end of you.  

Getting pain under control is part of this process. 

When you are in shock, you will find yourself digging all over the internet for cures, trying to do everything perfect, asking advice everywhere, determined to find the silver bullet that will end this for good.

If it doesn't go away, you will move forward down the same stages as grief.  So here they are as I found them on Recover From Grief... I wrote in CAPS after each of their paragraphs my reflection on what they posted according to my experience in the last decade with Reflex Sympathetic Dystrophy and Ulcerative Colitis.

 ( http://www.recover-from-grief.com )

7 Stages of Grief...

1. SHOCK & DENIAL-
You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

WITH CHRONIC PAIN, YOU MAY RETURN HERE MANY TIMES... IT IS CYCLICAL. AS PAIN GETS BETTER, YOU WILL FIND YOURSELF MISSING WHAT YOU USED TO DO, AND NOT QUITE READY TO CREATE A NEW VISION... YOUR HEARING MAY BE SELECTIVE WHEN OTHERS TELL YOU "IT'S GOING TO BE OKAY"   

2. PAIN & GUILT-
As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs.

Life feels chaotic and scary during this phase.

THIS IS WHERE THE WHEEL OCCURS THAT I MENTIONED AT THE TOP OF THE PAGE .

3. ANGER & BARGAINING-
Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death (OF YOUR OLD BODY) on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion.

You may rail against fate, questioning "Why me?" You may also try to bargain in vain with the powers that be for a way out of your despair.

SOME PEOPLE LASH OUT AT DOCTORS, OTHER PAIN PROFESSIONALS, GOVERNMENT AGENCIES, LAWYERS, RELATIONSHIPS.  PLEASE GOD, HEAL ME AND I WILL HELP OTHERS. IF YOU HEAL ME I CAN BE THE MOM MY CHILDREN NEED... OR  I WILL GIVE UP SMOKING, I WILL LOSE WEIGHT, I WILL...

4. "DEPRESSION", REFLECTION, LONELINESS-
Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be "talked out of it" by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one (YOURSELF- WHAT YOU USED TO DO), and focus on memories of the past. You may sense feelings of emptiness or despair. 

THIS COMES BACK AGAIN AND AGAIN FOR US DURING FLARES.  I USED TO HIDE, GO IN MY SHELL WHEN I SUFFERED, AND COME OUT WHEN I COULD HANDLE TALKING TO PEOPLE WITHOUT "BURDENING THEM."  I FOUND LATER... THEY WANTED "IN" WITH ME IN MY PAIN.  I JUST DIDN'T LET THEM.  IT WAS A VERY DIFFICULT LESSON.  I HAD TO LEARN A BALANCE... YES, IT'S OKAY TO TAKE TIME FOR MYSELF... BUT LET PEOPLE KNOW THAT I'M ALIVE, AND THAT I APPRECIATE THEM.  

NOT EVERYONE CAN BARE BEING WITH SUFFERING IN OTHERS... YOU MAY FIND THAT RELATIONSHIPS CHANGE, PEOPLE STOP CALLING SOMETIMES.  FOR THE MOST PART... THEY WILL BE THERE WAITING IF THEY ARE YOUR TRUE FRIENDS.  WAITING TO LOVE ON YOU WHEN YOU ARE READY, OR THEY MAY NEED YOU TO SHARE WITH THEM MORE ABOUT HOW THIS EXPERIENCE IS FOR YOU.  WRITE A LETTER OR USE THIS FABULOUS ONE WRITTEN BY KEITH ORSINI: 

http://www.rsdhope.org/letter-to-families--friends-of-crps-patients.html

5. THE UPWARD TURN-
As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your "depression" begins to lift slightly.

OKAY.  GETTING PAIN UNDER CONTROL IS MOST IMPORTANT.  WHEN THAT HAPPENS, YOU WILL FEEL THE UPWARD TURN.  YOU WILL GET INTO A ROUTINE.  DEPRESSION WILL LIFT BUT YOU MIGHT NOT TRUST IT. THERE IS A TEMPTATION TO DO TOO MUCH HERE AND RELAPSE. 

6. RECONSTRUCTION & WORKING THROUGH-
As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

RESIST THE URGE TO GO BACK TO YOUR COMPLETE OLD ROUTINE... CREATE A NEW RHYTHM.  USE TOOLS, SEEK GOD, GO INTO NATURE, WHEREVER YOU GET CENTERED... NOW IS THE TIME.

7. ACCEPTANCE & HOPE-
During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. But you will find a way forward. 

SO MANY PEOPLE HAVE WRITTEN ME THAT THEY LOVE THEIR LIFE NOW.  

SOME WOULD NEVER CHANGE ANYTHING ABOUT IT BECAUSE OF THE LIFE SKILLS THEY WERE FORCED TO LEARN... THE COMMUNITY THEY BUILT OUT OF DESPERATION... THE HOPE THEY FEEL IN HELPING OTHERS... I BELIEVE AND PERSONALLY EXPERIENCE A SWEETER LIFE NOW... I LOVE THE NEW ME.  

SUFFERING FOREVER... IS OPTIONAL.  BUT TO LIVE IN HOPE REQUIRES FOR ME TO BEGIN EACH DAY WITH A QUIET TIME, STAYING IN MY FAITH, KEEPING POSITIVE PEOPLE AROUND ME, COMMUNICATING NEEDS, ASKING FOR HELP, RESTING WITHOUT GUILT, LOVING THOSE AROUND ME WITH ALL I HAVE... WAS IT ALWAYS THIS WAY?  NO... MAYBE THIS LIST OF GRIEF STAGES WILL HELP YOU UNDERSTAND HOW SOMEONE TRIED TO DEFINE WHAT THEY SEE IN OTHERS.  TAKE WHAT WORKS, IGNORE WHAT DOESN'T.  BUT COME BACK TO IT, BECAUSE IT MAY APPLY LATER.  

YOUR DIAGNOSIS DOESN'T HAVE TO BE ON THE FRONT BURNER FOREVER.  LEARN TO RECEIVE PEACE IN THE STORM.

Please write to me if you have questions or comments or would like to share your story.  I would love to hear from you!  sonomahope@gmail.org