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

Saturday, September 2, 2017

Article 4: Living With a Chronic Disease

It’s a lot harder to beat depression when you are clinically sick than when you’re not.
Doctors and physicians are very reluctant and loath to challenge one another’s diagnosis.  It is a dirty medical profession secret.  Everyone has a lot at stake.  The first opinion may be wrong and you die.  The second opinion may be a better option.  The physician has your LIFE in his hands – your LIFE and your SOUL and you deserve respect for that.  Doctors must start coming off their high horses and start becoming more truthful.  If they don’t know they don’t know.  We would respect them more.
Because most cancer and other debilitating diseases can be a very clear warning of death, we tend to filter out the information so that it confirms the belief you already have.  If you think you dying, you will filter out the high percentage that live.  We must listen more and be open and transparent.  We must learn to ask the right questions, even if you write them out at home before you get to the physician.
Doctors must empower patients – they must allow for patient participation instead of playing at being god and expecting us to swallow everything they say.  A participating patient will live longer.  I am so participating that I tell the doctors what is wrong and what to do now.  My life is important and I want to live it the best way I can.  I don’t care if the doctor does not like me – I will go to another one.
It takes one human being to make the difference between life and death.  Just one human being who cares.
Cancer patients universally know they have cancer before the diagnosis.

Set aside a little time each day to relax and be at peace to allow the spirit to flow into you from God.  It is like a telephone.  Shut up and listen. 

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. 

Article 1: Living With A Chronic Illness


There are many people who live with chronic, debilitating or incurable conditions.   While most people take their health for granted because they are in the majority – chronically ill people take nothing for granted.  If the hand moves, if you breathe, if your heart is beating in rhythm, if you managed to get out of bed and go to the toilet on your own if you could brush your teeth … all these little things we rejoice in.  To be able to have a conversation with someone without losing your breath or diving for the oxygen, it is a wondrous event.
Some of the things I have learned during my 6 years of survival (because one cannot really call it life because life is LIVING and we are not able to LIVE to the degree a healthy person can) are the following:
Some people are not aware of other people’s feelings.  And once it is said, all the apologies in the world won’t take it back.  Chronically ill people use social media to maintain contact with their own species.  One of the terrible ordeals is to be put in a place where contact with other humans is thwarted – we are social animals and we need to socialize.  What is written on FaceBook lives forever and forever in the heart of a person who is chronically ill and a nasty or stupid comment makes the light shine a little less bright.
One of the key ingredients of doing well with a major illness is to believe that anything is possible and if today was bad, tomorrow holds the possibility of being a better day.  Not a well day – just a better day.  Maybe tomorrow you will have less pain, you will vomit less, you will stop shitting through the eye of a needle and you may even get a visitor.  We have to believe that anything is possible.
If you want to stay alive you have to have a reason to do so.  Doing what you love to do and loving what you do is an important ingredient that gives one a reason to want to stay alive – because death would be so easy for any of us.  All we would have to do is give up and then take a bunch of our medications.  I do not believe that there is one single person who suffers from chronic illnesses who has not done the research on how to kill themselves properly and how much medication it will take. 

Friday, August 12, 2016

A Good-bye Letter to me from me

My dear Dianne

I know how you struggle to accept your limitations.  I know what it was like to be able to do as you pleased when you pleased.  I know what it was like to think nothing of getting up, showering, dressing and putting make-up on.  I know what it was like to feel energised and to look forward to a day of excitement.   I know what it was like to be healthy; not giving your body a thought..that it was just a vehicle to carry the essential you towards what you wanted to achieve. But that Dianne is dead.  She will never come back.  What you need to do now is bury her; mourn her and grieve. So I have to bury her now; not later but right now. She is gone.  She won’t come back.  Only by doing that will you be able to close that door on the past and begin again to create a new Dianne, another one who is content and who regains a sense of self-worth and self-esteem.  The old Dianne lived a life of meaning.  Chronic and debilitating illness has robbed her of everything that had meaning.  She feels left out, alone; with huge feelings of doubt regarding her abilities and her life.  Life has very little meaning now.  She thinks a lot about suicide.  Suicide is just a nice word for killing oneself – of removing the pain and shame of not being able to do much and not having a sense of living a life of worth.  She struggles to find peace with these invisible ropes that bind her to her room and bed.  She struggles to connect with others and a simple answer to “How are you?” becomes a nightmare. Does she lie and say she is fine or does she take the chance of telling the truth only to find that her answer makes no sense to the one who asked.   Or worst still the response is “But you don’t look sick”, or “I am also tired”.  The responses that are meant to make one feel better when they say “Hope you get better soon”, irritates because no thought goes into what they are saying.  She knows she will never get better!   She hates not being able to care for herself financially and often physically.  She struggles to do the basic things like shower or change the bed linen.  These are tasks that were so easy before that she never thought about them.  She just did them.  Now she spend hours and hours doing these things in her head, but never managing to do them herself.  She has to ask someone to help her and finds that degrading and humiliating.  She HAS to find meaning and worth in a new life.  She has to find something to fight for and to live for that is bigger than she is.  She must have something that is life-affirming and that will give her life meaning; something that will force her to think about someone else who has no voice or who has been unfairly punished or put into a situation that is prejudicial or discriminating.    I want to be able to write to a new Dianne; a Dianne who loves what she does and who feels like she is living a worthwhile life again. This struggle for psychological survival and self-esteem in our culture is going to be a difficult task.   But the new Dianne can do it.     Hello Dianne – I am going to have an exciting time discovering a brand new you.  With love and gentle healing – be patient with yourself.  You will be OK. 

Wednesday, August 3, 2016

Lourdes

Lourdes

Being a Roman Catholic by birth, my connection with St Bernadette and Lourdes has been a long one.  I was told and then read the story of the miraculous healings that took place in Lourdes after the Virgin Mary appears to Bernadette.   When I was 11 years old, I was told by my parents that my beloved grandfather was dying.   I begged and pleaded with them to take him to Lourdes.  I knew in my very heart and soul that if we could get him to Lourdes he would not die.  I did not understand why it could not be done, nor did I understand the implications of a dying man and the distance to Lourdes.  It was only when I was a young adult that I realized the impossibility of my request, but for years I held a terrible resentment because I thought no one loved my grandfather enough to take him to be healed.
When my niece, at the age of 3, was diagnosed with a very advanced stage of Crohns Disease, I made it my business to raise the funds to send my mom, her mother and her to Lourdes.  She was very ill when they left South Africa and after one day in Lourdes, she sat up and said she was hungry.  On her return, the gastroenterologist could find no sign of the disease.  That was almost 25 years ago.
My next sojourn to Lourdes was to take my daughter, diagnosed with advanced sarcoidosis and very little lung function.   She went into remission within weeks and has stayed that way.  She now has a 16 year old daughter and a 6 year old son.  Another miracle.  

Lourdes is the most holy place I have been and I have traveled a lot.  The very air of the town and around the grotto is filled with an energy that made me feel that I had champagne bubbles in my heart.  I could not even stand at the grotto – it was as though the very earth pulled me to my knees and I could feel the unbidden tears rolling down my cheeks.  To see that same rose growing out of the rock after more than a hundred years was in itself a revelation.  Now I want to go.  

Wednesday, November 25, 2015

People with Rare Diseases need Understanding from those around them

Society needs a new platform of understanding of rare diseases. 
People with rare diseases often end up being the expert in their particular disease, but it is a very lonely road to travel. And most doctors do not like what they call “google patients”.  But with a rare disease, how can we not become detectives of our own illnesses, constantly hoping that there is a cure out there for us or even finding a cure ourselves through our research.  Just maybe a new look with ignorant eyes can see something that would be easily overlooked by the researchers.   The difference between people’s responses to me when I tell them about not having an immune system and telling them about the breast cancer is like chalk and cheese.  While you can’t see either illness from the outside, almost everyone without fail reacted with compassion and understanding to the breast cancer.  They do not even look at me when I spoke about my absent immune system.  I can see in their faces that they either don’t want to know or they think that I must have AIDS (oh, what skande) because AIDS has something to do with immune systems.   Rare illnesses also deserve to have the same platform of understanding.

To all those who have a rare disease – you have my immense respect.  It isn’t easy to paddle alone in a canoe.   When we hit the rapids all we can do is hold on.  Tomorrow the river may flow more gently, and we may have the energy to be grateful that we made it through to another day…one that holds the possibility of beautiful and magical moments.