Saturday, September 2, 2017

Article 2: Living With a Chronic Illness

The unknown also holds a promise that anything is possible.  Let go of your past life, think about what you want to do that you love to do, don’t think of the negatives in it – the negatives disappear once you doing what you love.  Anything is possible.  I was a people person – a human rights activist actually on the ground, doing the most hair raising things.   Now I have moved that activism onto social media and I am writing.  Writing is what I love to do.  If one person can be helped by reading my work, then the book was worth the time and effort put into it.  The greater the hardship of the journey to get to finding and doing what you love, the greater the possible outcome.
It is impossible to do more than one thing at a time.  People do not understand this of a chronically ill person.  We are already doing a lot of things just to stay conscious to what is going on in one’s body while at the same time trying to focus on more than one thing.   It drives us crazy.  Have some patience with us, please.
What the fuck is wrong with doctors?  Doctors are only worth the amount of respect they have for our souls.  The other day I heard a doctor tell a terminal cancer patient who had not eaten in 10 days, to go home and cut down on her morphine dosage.  Why?  What kind of doctoring is that?  He cared nothing for her as a soul or even as another human being.
People with cancer and life threatening diseases experience intense feelings of isolation.  This disconnectedness from society can shrivel a person’s will to live.  So if you can, find one of us to visit or to phone now and again.  We are not asking much.
There is a culture of “deal with your pain “rather than become dependent on pain meds amongst many doctors.   Why does one have to suffer if there is something that can help us?  Who gives a shit when we are balancing on the rail between life and death if we become dependent on it?

My own reality of my ‘appalling’ illness is very different to that which others perceive.  I call it appalling “because what is wrong with me is diagnosed 1 in 10 million.  That does not make me special.  It does not make the doctor sit up and think “mmm … here is a challenge for me”.   It makes me a problem with a capital P. 
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