Showing posts with label debilitating diseases. Show all posts
Showing posts with label debilitating diseases. Show all posts

Saturday, September 2, 2017

Article 3 : Living With A Chronic Illness


If you feel like a worthy person, you will have a reason to stay alive.  Know that you are a worthy person; no matter what anyone says.  You are worthy to enjoy the best life that you can under your circumstances.  I am worthy of having my husband come in and talk to me for 30 minutes in the evening instead of watching television.   I am worthy of a telephone call “I’ve been thinking about you.  Is there anything I can do for you?”    When I ask my husband to knock a nail in the wall (because I can’t do it myself anymore) or any other thing you need (and our needs are small – we are fully aware that we are asking a favour) – we are worthy of it being done.  Surely we do not have to ask 5 times until we sound like we are nagging?  This is written by a woman, but I am aware that many men also have the same problems although their needs may be different from a woman’s needs.  We are worthy of asking our partners to please go to the chemist to buy our nappies we need.  We are worthy human beings.  Being chronically sick does not make you less important than healthy human beings.
I read a book written by Paul C Roud, called Making Miracles.  It was an eye-opener of note.  He was interviewing a woman who had been given 3 months to live and this was 10 years later.  The interviewee said, “It’s ironic, but my sister and brother were jealous of me, jealous of all the attention I got:  My sister admitted to me that she hated my guts because so much of my mom’s time was spent on me”.  Well, that is what happened to me too.  I wrote about it in my book Shattered.  And these are not children – they are adults.

I loved the story I read in his book about the woman who came home from the doctor with bad news on her cancer.  Her husband was lying on the couch and the first thing he said to her was “What’s for supper”.   The next morning, she packed her cardboard suitcase with her clothes, took the little housekeeping money she had, climbed on a bus and checked into a boarding house.  The next day she went to the lawyer and asked him to get her a divorce.   When he asked her why she said, “I have been living with that man for 38 years.  If I only have three months to live, then I want it to be a happy three months’.    Her interview with Dr. Roud also took place ten years after that bad diagnosis.  My advice is to do whatever it is that will make you happy. Don’t worry about what other people say – it actually is none of their fucking business.  

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.