No Prime Time TV?!! Relaxing with Kierkegaard?

    Yup I finally did it, I agreed to get rid of our Dish Network! No more prime time TV.  No more channel flipping.  No more easy access to mindless watching.  It is the best thing we’ve done all year!  OK, so we are only in month 3 of this year, but seriously this is an amazing discovery.

    My husband had been suggesting it for years.  But as my health decreased in the last few years I was able to do little else.  Until recently, I wasn’t able to read for more than a few minutes.  So being able to listen and watch (even if it was blurry) was something entertaining to do.  I did try to make decent TV choices.   

 

    We haven’t actually put the TV to the curb.  We did get Hulu and have instant Netflix.  However, our TV watching has dramatically gone down.  We now spend more time in the living room reading.  My son has been going through different series books like crazy.  My husband and daughter have been reading through a few different books and discussing them.  I have been journaling more, connecting with the huge Lyme community (which until recently I didn’t know existed) and I have been reading more.

 

    As I mentioned some of my symptoms from Lyme have greatly improved from the last couple years.  I am still very sick and cannot do much in a day, but I am not having short term memory loss, difficulty concentrating and not nearly as much blurry vision. That was awful to struggle with.  Now that I free of those conditions I want to celebrate by USING my brain!!  It has been so fun getting to read and retain the information! Now that I have my mind nearly back, I figured it would be great for me to start learning some of the stuff I missed out learning in college.  My health kept me from completing college year after year. This year 2011, I want to learn new things, expand my mind.   In future blogs I will share some of what I am gleaning from different books I am getting to read.  

    I just started reading Keirkagaard For Beginners.  Wow, I didn’t realize existentialism isn’t a scary thing.  I thought it was a lofty philosophy thing that I wouldn’t be able to understand and it would just make my head hurt.  Well, maybe reading Keirkagaards writings would certainly do that.  So it is good I am starting with this beginners book-it even has drawings on each page and uses humor!  It is MY kind of book!

    I do love the idea that subjective truth asks the question "How?" and looks to see the way a person answers by their actions not merely what they say.  This has been a truth I have seen beautifully since my diagnosis with Lyme Disease.  When I became more honest about the depth of my debilitating struggles due to my Lyme, friends responded.   I had to become a person willing to question and look into what was going on with my body even when objectively it appeared I should stop looking for something different than what was before me.  I had answers from my set of 5 doctors who were treating me for various ailments.  Yet my experiences said that is NOT the truth.  I am glad I was able to question, get a Lyme diagnosis and begin to heal.  I can now relax into the fact that I am sick in ways that most don't understand.  Now throughout each day, I am able to see small things worth smiling about.  My actions show I am a grateful person.  Who knew that all stems from Kierkagaards philosophy?

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

Valentines Day-The Day of Gratitude

Today I have my normal headache, my fingers hurt to bend, the bill of my hat can't seem to block any of the painful lights, since I awoke my stomach has grown from a small pooch to a beautiful round pregnant looking belly, other pains remind me my stomach is not well, with quiet I hear faint ringing, walking to get the mail left me out of breath & more annoying symptoms I don't wish to try to think of at the moment.  

However, today is a day of love.  I am happy to celebrate this day of LOVE. To show love is to show gratitude. I am grateful for so many things. 

I might be unable to do much, but I am not lifeless.  To show my gratitude to my husband and kids, I came up with some fun ideas to celebrate this day.  

1. My all time favorite easy idea is to use colored dry erase markers on the mirrors!  In the kids bathroom was their own fancy decorated Happy Valentines Day! And a reminder to love those around you today and show kindness to the kids at school!  Tim, my husband got his own letter written on our mirror.     

2. For my husband, little notes of expressing the different areas of our relationship were left in his coffee grounds, lunch bag, sink and bed.

3. Card treasure hunt for the kids, ending with a few candies and four $1.  

Okay so I might be cheap, but I am creatively loving!  But now I hurt so much all over and my body feels over stimulated.  I need to go to sleep.  My insomnia has been making it so I do not get to meet my dreams for about 3 hours.  Tonight I get to try a larger dose of Melatonin per my doctors recommendation.