Monday, April 29, 2013

Living within

This illness has had a bit of a bell curve.  When it began I was in constant denial of the depths of how bad my health was and pushed through day in and day out living my life despite the insanity.  I would push this craziness to the back of my mind and some how carry on.  The symptoms were constant  subtle whispers of something terribly wrong.  When I ignored that long enough they began screaming symptoms with the rapid weight loss, intense body aches, inability to concentrate oh the list goes on, but no answers and no diagnosis meant "I wasn't really ill."  Then it reached the peak where getting out of bed was nearly impossible, I called that episode "mono" tired.  Since most people could relate to the illness mono or knew someone who had had it.  The effort to take a shower, or comb my hair some days became Herculean tasks.  Then there were the days where I "geared" up all day to attend an event put on the happy face and the second I would walk into my home crash on the bed too tired to undress.  The past few years things have moved again, acceptance and treatment.  In some ways this has been just or more difficult than the past, because I am no longer "living" a normal life, I am "fighting" every day to return to some resemblance of normal, but the process is difficult.  The treatments take me out of state, and often I wonder if Wisconsin is truly home when I spend more time in Phoenix.  Over the past 6 months I have learned to be a gracious receiver.  I have learned to allow people constantly in and out of my space and learned how to appreciate accepting help even when you do not want to.  I have learned to trust in a way I did not think I could with my physician and this process.  However, there are days when I am so low that I can not comprehend this has become my life, a life directed by an illness not the other way around.
Thank you Addison
So today I made a big decision, a leap of faith, I am coming home for a short weekend.  My doctor needs me to stay in Phoenix longer than we had hoped for legitimate reasons, but today she agreed with me, that a quick trip home would be a good test.  And for me it's the first time that I have decided to live again and put the illness second, and my hope is because I can, it is a whisper of strength.  What I know for sure is that you cannot will this away you can push harder, but at the end of the day mind over matter is not an option.  However,  I have the confidence that leaving on a Thursday returning on a Monday will not set me back months, perhaps it will crash me for a few days or even a week- but I am prepared for that, and feel strong enough to take that risk.  And I think today my doctor understood, I said I have missed so much, I am just so tired of missing my life.

Am I nervous, hell to the yes.  It's hot which means flying is hot on the runway in Phoenix, and I don't do well in the heat.  It's a quick trip with a two hour time difference, and it's a weekend with scheduled events.  But this also feels like a tide change, that despite how sick I have been the past few weeks I was startled that my mind would even allow this plan to form, so that has to count for something.  This past few weeks have perhaps been some of my lowest, yesterday for no reason at all I used the counter for support and just cried wondering how the hell can I keep doing this, but for so long I didn't even have the energy to imagine that I was doing anything, apathy is scarier than fear.  Apathy is when you are too tired to form a plan, too tired to care, too sick to do anything but move your pinky finger as you lie perfectly still.

So today there is that little glimmer and even if it is gone as quick as the clock strikes midnight, it was here.  Maybe I have moved the pendulum just enough to begin living within this illness rather than the illness being all I live.

Mary and Willi's "Garten"
P.S....So while up for the second night in a row at 4am being sick, I was having serious doubts about my "plan"...but I will borrow Glennon Melton's words and Carry On...sometimes that is all we can do but carry on, move forward and try to live again without constant doubt.

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