And The Bout Continues...

    I feel like a grandparent.  I am in the body of a elderly woman, wondering how I lost my youth so fast.  Full of ideas and desires that want to be lived out.  Saddened by the reality that my body cannot fulfill my wishes.  Wondering what the future holds.  If I want to keep open the possibilities of my future I need to stay in reality.  If there is to be hope I have to see the gravity of my situation or I will not make daily choices that will guide me to health.   

    At times I find it haunting to realize where I am at.  It is constantly telling my body “No.  Don’t touch that, do that, be part of that.”.   It is having to then rationalize to myself WHY I am unable to do a simple task such as load the dishwasher when it will only take 5 minutes.  My stubborn voice will argue, "But, it will allow for the kitchen to not be such a mess!".  It is giving myself a scolding, "NO don’t pick up the items that have fallen to the floor!", and adding the kind reminder of "You are too sick. You don’t need it picked up. Do something else.".   

 

    As I listen to the dialogue in my head I am trying to be submissive but am distracted once more with my stack of paperwork, things that need to be sorted.  I decide I can sit and do this.  I spend 10 minutes, and have accomplished piles.  Nearly complete.  Just need to put away piles.  The pain within me becomes unbearable-headache, nausea, exhaustion, mental fatigue.  I must stop.  But now I have created a bigger mess.  I am leaving things cluttered and am disgusted with myself.  I move to the couch and on the way see my purse flown on the couch and say, “Oh that will take one quick minute to put away. I can help do SOMETHING!”.  However, once it is “away” I see shoes out of place and a sweatshirt on the floor, a dish that needs to be brought to the kitchen, Buddy's toys across the floor and in goes on and on and on and on like the yellow lines on the midnight road. 

    I feel this craziness in my head all day long.  Debating, pleading, begging, arguing, justifying.  It is utter confusion.  It is not healthy.  It is a stage.  It is depression.  It is chronic illness.  It is normal.  It is OK.  It is awful.  It is a coping mechanism.  It is important.  It is necessity.  It is my life. 

And now I think, what will I eat today?  "Ah, too tired to think about it!  It doesn't matter!"!  Then the reasonable, patient me says, " Yes it does!  You want to heal so you must eat and eat well.  You can take time to prepare a little something.".  Once again the debates in my head begin.  Same battles, new topic.  Where is the retreat for my mind?  Where can I find a break from the multiple personalities constant bicker?  Meditation.  "Boring!",   "Everything doesn't have to be FUN! Just do it. Try. Hope. Believe." ….the bout continues……

I wrote this in my journal last August.

Yeah! Self Magazine did an article on Lyme Disease!

So wonderful to see this article in SELF Magazine!  Great overview of Lyme Disease.  They covered the problems of diagnosing Lyme Disease, of getting significant amounts of antibiotics, lack of doctors with knowledge on Lyme, what Chronic Lyme is, co-infections like Babesiosis, and problems in recovery.

They told the story of one woman, Durham and shared her oh so common story,
    "Durham has improved, though not recovered. She is on a medical leave of absence; unable to afford her Manhattan apartment, she moved in with her mother. She still fatigues easily, and her eyesight and attention are affected. "What makes me mad is I knew something was wrong back in 2006, and no one looked at it," she says. "I want people to know they should listen to their body and not give up. They are not alone if they are going through this." SELF 


I could relate to this because over 15 years ago, I knew something was wrong with me but wasn't diagnosed with Lyme Disease, and the many co-infections, until about a year ago.  The only reason I was properly diagnosed is because I finally got tired of having 5 doctors treating all my different medical problems to no avail.  Oh and I also decided I AM NOT CRAZY and began tirelessly seeking new answers through different doctors.

It was impressive that the article also shared the dark secret of Lyme: It can be fatal.
      "Although babesiosis is less common than Lyme, you can argue that it creates as big a health burden, because of its severity and fatality rates," says Peter J. Krause, M.D., senior research scientist at the Yale School of Public Health in New Haven, Connecticut. "There are more cases than we previously thought, and babesiosis is also the number-one reported cause of infections through blood transfusions in the United States." But because medical awareness has not kept up, patients have been overlooked, undertreated and taken by surprise when their enjoyment of the outdoors—a hike, a run, a round of golf, their own backyard—turns into a life-altering threat."  SELF

I am still comming to terms with how sobering this disease really is.  It is hard to embrace how truly sick I am.  I am eternally grateful for my doctor who spends over an hour a month with me going over various things.  My doctor will spend time to make sure I understand the foreign language of my labs.  After my doctor has spent time interpreting them, I am always told to walk away with this, "Chrissy, you are so sick.  Your body is so fragile."  Initially I always HATE hearing that.  After I have allowed myself to vent a bit and get pissed off I am able to take a deep breath and relax into it.   I realize it is soothing that my doctor knows how awful I feel.  There is so much hope in hearing the severity of my sickness because it means this is not normal.   I will not always have to deal with great pain & have such difficulty doing simple daily tasks.  I can and I will feel better than this someday.  I can dream of more. I can succeed in so much more.

"As tiny ticks proliferate across the country, they are spreading diseases you and your doctor probably haven't heard of." SELF
That is why advocacy is so important. Spread your story or my story of Lyme. 

http://www.self.com/health/2011/03/rare-diseases-spread-by-ticks?currentPage=1