Staying Positive

I have had people ask me, “How are you staying so positive through all of this?  Aren’t you angry?” On the inside I chuckle to myself.  They have caught me on a good day.    Are you kidding?  Of course I am!  But I must keep moving forward and try to focus on the positive, or all of the hopelessness that I know is chasing right behind me will soon catch up.  I cannot let that happen.    Now don’t get me wrong.  I am no Pollyanna!  I certainly have my moments when the negativity of it all seems to loom over me.  My husband can attest to that.  Sometimes the whole task of it all seems very daunting.    


The loss of my health has been a grieving process.  It has been for my husband, daughter, and son too.  An illness of this magnitude affects the whole family.   However, I have found we all deal with it very differently.  My husband wants to “fix” it all.   My son just chooses to pretend it is not there.   My daughter, who has been on the other side, wants to mother and make it all better.   I seem to dive in and research everything I can get my hands on.  I become obsessed.

I have gone through all the typical stages of dealing with any loss- denial, anger, bargaining, depression, acceptance, and even forgiveness.   However, my road through these stages has been different for my illness than when I experienced it with my daughter’s diagnosis of Epilepsy.  With her I was in such shock, I could not believe this was happening.  It just came from nowhere.   I went into a deep depression; it was hard on our marriage.  My husband and I viewed treatment options very differently.   I bargained, prayed, and begged God to make her better.  I was angry that so much of her life was being taken away from her.  It was not fair! 


My illness also has come upon us suddenly, but I guess because it is me, I feel all of these stages differently: 


Denial- This did not last long for me.  I knew that with how my body was feeling after receiving Levaquin that this was not going away.  There was no way having a feeling of being burned by acid from the inside out for 8 days, that this was not doing significant damage to my body.  I could feel it.  I knew my life was changing.  My husband realized this too.  He saw the agony I was in.  There was not denying it.   We hoped that perhaps at worst this would last a few weeks.  However, it kept getting worse.  Nerve conduction tests confirmed peripheral neuropathy.  I knew this was staying around.   Trying to stay positive—At least we received a diagnosis quickly, and did not spend months in the unknown. 

Anger- It made me angry as I laid there on the couch, feeling the destruction going on in my body.   There was nothing I could do to stop it.  I was angry that a war was raging inside of my body and nothing was being done.  Doctors did not know what to do other than give me pain medication. Talk about feeling helpless.  I could literally feel my body being burned away.  I was angry at myself for not remembering the name of the medication I was allergic to.  I kept apologizing to my husband for doing this to myself and to our family.   I was so angry at the nurse that injected it without telling me the name of the medication.   I was mad at the doctor, and I was even more pissed at the FDA and the drug company!  How could they let something like this occur!  Trying to stay positive—I have been using this anger to help educate others. 


Bargaining-   I went through this stage for quite a while with my daughter.  I bargained with God all the time to make her better.  I think it is harder when you see your children suffer.  That just should not happen.   With me though, I have had a hard time praying for myself.  I have not prayed to be healed.  I have come to a realization that this is how things are now.  I have to make the best of it and move forward.  Instead of thinking “Why me?” I think “Why not me?”   I am no different from anyone else.  We are all susceptible to illness, disease, human error.   Perhaps I have learned that bargaining doesn’t work.  Staying positive- I pray that I can learn to live with the situation and make the best of it.   


 Depression/Grief- I grieve for my “old body” and the things I took for granted.  I get sad when I think I may have lost the future that has been in my mind’s eye.  My husband loves to travel.  This is a true passion for him.  He looks forward every year to plan our yearly trips.  He researches where we are going, like I research our family’s medical problems.   Because of his frequent work travels, we are fortunate enough to be able to travel as a family because of all the frequent flyer miles and hotel points.    We had a trip planned for New York for Thanksgiving to see the Macy’s Parade, a trip we scheduled over a year ago.  My husband cancelled our reservations just last week.   There is no way I can manage travel and then the crowds of New York.   We are now talking about having to cancel our summer trip to the Grand Canyon.  We always go on family vacations and I realize my illness will more than likely interfere with this now.   We have talked for years how we want to travel after his retirement.  Now we are not so sure that will be possible the way we have envisioned it for years.   Trying to stay positive—Perhaps I am misjudging the progression of this injury to my nervous system.  I am trying to be hopeful that we once again will be able to take trips like we used to. 


Acceptance and Forgiveness- I have accepted the fact that this Peripheral Neuropathy is not going away, at least not anytime soon.  There is no cure.   It is a sobering fact.  I have forgiven the doctors that have done this to me.  I realize now it was not there intention to harm me.  However, I am still struggling in this area.  I have a difficult time whenever I pass by that facility.   I will tell you I will not be returning there.  Not that the doctors were not professional, but I still have too many emotions connected with being treated there.  I just can’t enter that building.   


Being constructive- I am adding a new phase of dealing with illness.  After accepting my loss, or new way of life, it is time to be constructive. My illness is allowing me to use the gift of writing, which I may otherwise not ever have used, with this blog.  There is still a war raging inside of my body, but I have chosen to embrace the enemy.   I am using my experience to help others. I most definitely have not forgotten the fact that the medical community and the FDA don’t acknowledge the magnitude of this happening to people.  I am prepared to fight the fight just as I did with my daughter.  I have accepted the loss, but I am not going to bear it quietly.  I am trying to use what anger I have left constructively.   


Staying Positive-   I am trying my best to cycle through all of these phases as optimistically as I can. I give myself daily pep talks to keep a positive attitude.   I remind myself that if I was able to do a task before, I can certainly do it again.  I try not to compare this “new me” to the “old me” prior to July 17^th.  Instead, I try to see how far I have come, and how much more I can do since being injured. I am learning to accept what I can and cannot do.  If I am not feeling well, it is o.k. to take the day off and rest.   If I am in tremendous pain, I do cry, but I pick myself back up.   Perhaps tomorrow will be a better and more productive day.  I have to pace myself.  My body needs to heal.   I have found I need to surround myself with positive thoughts.  I have found some very supportive online groups.   It really helps finding others that are going through the same thing.   I try to avoid those that focus on the negative.  I post daily motivating quotes on my facebook page, "Life in the Rabbit Hole", not just for everyone else, but mainly for myself to remember to keep a positive attitude. 


I may not be able to control my physical health, but I can control how I react to having a chronic illness.  I don’t know if I will get better or worse, but I can make peace of where I am right now.  I can accept what life has given me.  I can have hope.  This does not mean giving into it.  Quite the opposite, I feel it helps me move forward, to take charge, and stop continuing to be a victim.  I refuse to let this ruin my life.   I need to focus on being proactive, focus on what I can do, focus on my accomplishments, focus on getting well, focus on staying positive.