Thursday, March 22, 2012

Ides of Madness: Living with and overcoming maddening thoughts.

Having a chronic illness typically ensures that one will also battle depression.  Sometimes, the depression can become brutal and leave one feeling empty, lonely, and even angry.  It can creep up on you with stealth and poise or it can hit you like a ton of bricks. There are times when it can blow small problems out of proportion leaving one with a mountain instead of a mole hill. In any case, finding your way out of the madness and back to ‘normal’ can be a test of anyone’s character.  It’s in these moments where I have learned to find solace, center, and strength. 
It’s a situation I have been in plenty of times. It is a situation I find myself in at this exact moment even though I am on vacation with the man I love.  I want to scream loud enough that the entire World hears me.  I want to cry enough tears to fill the Mississippi River. I want to run away from Chiari, from life, and mostly from myself.  Unfortunately, I am not capable of doing any of these things. I must find a way through all of the crazy thoughts in my head in order to continue to live a happy and full life. 

I would like to take a moment to get real here, to talk about the things that no one wants to admit to.  These are some of my darkest thoughts and I don’t easily share them. 
1. I have often wondered why I survived decompression surgery.  If someone could have whispered to me during surgery and told me what the quality of my health would be like post surgery would I have ‘chosen’ to live?  I have experienced more pain, tests, depression, difficulties, and procedures in the six years since surgery than I did in the thirty six years before surgery.  It certainly doesn’t seem like a shining example of a great quality of life. So why didn’t I just die on the table?
2.  Frequently, I am angry that I have this stupid rare condition that people and doctors don’t understand.  It really pisses me off to have to explain to a doctor what my condition is and what treatments they need to use to effectively treat me.  I didn’t go to medical school because, frankly, the human body grosses me out.  Therefore, I have zero percent desire to learn about some obscure condition in order to become by own best medical advocate.  It’s not my job to practice medicine.
3.  Why can’t people understand that I am ‘sick’ even though I look ‘healthy?’  “Well, you seem like……..”  I loathe that statement.  Don’t tell me how things seem or how I look.  For that matter, don’t tell me how I should feel.  I don’t care if you think I should be grateful that I’m alive.  I don’t care if others are worse off than I am.  You have no idea what it is like to live with a difficult and complicated medical condition.
4.  Where can I go to get away from myself? I hate myself when the depression gets to me.  I realize I am not a good girlfriend, a good mother, a good friend or a good family member. I realize I am cranky, short tempered and pissy. I wouldn’t want to spend time with me so I can’t find any reason my loved ones would want to either.  Is it possible to become someone else and forget this evil bitch that has taken me over?
These are just some of the many thoughts that accompany this dark cloud that every Chiarian knows.  So what do I do in order to cope with these thoughts, in addition to, my symptoms?  How do I continue to find a reason to smile?  What are some simple solutions to appease these nasty beasts so that I can get on with life?
  • Journaling – I write the things I dare not speak.  For me, it helps put them into perspective so that I can remember that my life is much greater than my difficulties. My only requirement is that I write honestly. I don’t care who it hurts because I am the only one who reads it.
  • Music – Heavy metal when I am angry.  Gospel when I am depressed.  Happy, foot tapping music when I am sad.  Pop music for coping with symptoms.  I am a firm believer in listen to whatever soothes your soul. I listen frequently and rarely watch TV because it uses too many resources and leaves me with sensory overload. Music combined with rhythmic breathing is my drug of choice for coping with challenging medical procedures.
  • Prayer/Meditation – It isn’t completely prayer and it isn’t completely meditation.  It’s my own personal blend of the two. I spend some time chatting with God like He is my best friend in the whole world.  He doesn’t mind that I am not formal with our talks.  I also spend some time reciting a mantra or clearing my mind of thought by taking a ‘mental’ vacation.  I go to the beach or a beautiful flower covered meadow. It doesn’t matter where it just matters that I am alone and calm.
  • Talking – I have paid a therapist so that I could cuss at her.  I have been in group therapy.  Lately, I have discovered a wealth of resources that allow me to speak openly about what I am experiencing.  My fiancé is incredibly understanding, an online support group has provided a safe place to share my madness, and I talk to myself on my blog. 
  • Reading – I escape into a whole different world with a good book, most recently The Hunger Games!  Placing myself deep into an interesting story can make me momentarily forget all that ails me.  It’s a good way for me to remove myself from my current situation and to surround myself with a new experiences.  Truthfully, when I am not with my fiancé, it is the only way I can clear my mind enough to fall asleep. 
These are just some of the things I use to help fight the negativity that comes with being chronically ill.  I realize that my thoughts can spin out of control and I often times struggle to get them back into perspective.  This usually causes my emotions to become overly sensitive, as well.  So I would like to cry or cuss at someone just for looking at me.    Most of the time, the majority of the people around me do not realize how often I deal with these thoughts.  But they are there.  My constant companions in life.  I have chosen to believe that, like an imaginary friend, they are real and they are usually hanging around nearby.  I don’t want to tell people about them for fear that they would want to commit me.  So I give them a nod and a wink to acknowledge their presence.  Then I go about my business of slyly finding ways to piss them off and to run them out of my life. So far, they always come back; but I am not yet ready to allow them free access to roam around my life. To all of my invisible friends that want to bring me down, watch out I’m stronger and better than you are.  I have plans on living a long, happy life. So you might want to start looking a new friend to hang around. I think I’m over you.