Showing posts with label chronic illness. Show all posts
Showing posts with label chronic illness. Show all posts

Tuesday, February 4, 2020

What I Want You to Know about Me

 There is something that is weighing very heavy on my shoulders and my heart.  People do not realize how sick I am because I always am upbeat (most the time) and positive.   BUT, I will see someone after I have been walking or talking for 3 or so minutes and they will greet me.  I am physically unable to greet them back.  I do not have the oxygen in my body to make that response. I will then be greeted again, my name used and the words enunciated as though they are talking to a fool.  With my limited amount of energy I try to use eye contact, face movement and hand movement explaining that I am unable to talk yet and could they wait a while.  No one gets it.   They either turn away in disgust or turn away assuming that I think I am too good to be lowering myself to greet them (and that is true because I have asked later on when I can speak).  My frustration levels hit an all-time high with me wanting to die because I cannot breathe enough air to scream.   And when I have been talking to someone when I have the energy and we start laughing, I lose all energy and cannot continue the conversation and often just fall asleep through sheer exhaustion – sometimes just blacking out and not knowing when the person even left.
I cannot look after my own personal hygiene, I cannot walk to the toilet unaided, I cannot do a thousand things that you take for granted.  I cannot go into shops, I can’t buy what I need or even want to use for my crafts.   Even writing – I write for 30 minutes and then stop and have to wait until the pain from my arms becomes bearable and then I can start typing again.
And still, people want me to take up their batons and run with them for the things they are passionate about.  Not once does someone thing – “Gee, I wonder if Di would like a cup of tea?”   or “How does she manage to wash her hair?”.
I still have a fucking good brain and I can still do a lot of things and say a lot of things in writing that others are afraid to say – but I need help.   I need help to hire someone to bed bath me and make me tea and change my linen and to pass me the things I am going to work on that day in bed.  
I want to die with my boots on but without YOUR help, this is not going to happen.   Why do people say they will help and they don’t?   Why do people no longer use their word as their honour?   Why does no one care now at this stage when I am still doing what I can with what I have but could do so much more with a little help?
Ever wondered what it is like not to be bathed or showered for a week?  Or to lie in a wet bed for a day? 
Ever wonder what it is like not to have a single doctor in the country who has ever heard of your disease and that there is a cure but I would have to go to the USA to Maryland for 11 months … where would the money come from?  The doctor is prepared to treat me for nothing.   But it is too late now because I cannot even get to the hospital without an ambulance, never mind thinking of going for a cure in another far off land.

I have so many wonderful ideas to change our world but alone, I can do nothing.   I really want to get these innocent prisoners out of jail – I really want a place where battered women can flee to – I really want to have a plan in place for when our rivers run with blood.  I really want to be able to provide food to the starving and that is already started in a small way and we eat from our garden.  But I can teach – I can show people how to improve their lives – I can mentor – I am a psychologist – I know the constitutional law – I can write, edit and proofread…And then publish for other people, not only for myself.  I can motivate, encourage and connect dots for people.   All my flaws and scars are what makes me a uniquely creative and beautiful human being.    I am afraid of nothing except suffering to breathe and to die that way.
I am a great supporter of paying it forward with random acts of kindness – and I am richly rewarded by our Maker who gives me the strength to continue to do His work.  But now He needs YOU, His angels to help this one.  

Friday, July 5, 2019

What I have in Common with Ken Saro-Wiwa


My life was busy, happy and I felt contentment most of the time when I was not mad at the system which was letting others down – or if I saw or heard something that was unjust – I could not help it, I had to do something about it.
Then suddenly, like a thief in the dark, illness grabbed hold of me and refused to let go.  My acute illness turned to chronic illness and then included the gut-wrenching words “life-threatening, and ‘prognosis’.
No longer could I jump into my car and hair around bends to get to the abused or violated person…no longer could I jump onto the phone and call my connections around the world…no longer could I physically go into a shebeen and physically pull a child away from five men who were attempting to rape her…no longer could I actually, do what I felt I was put on earth to do.
How could I still have my life with so much of it taken away – I grieved for over a year for that which I could no longer do.  And then I decided, just one morning when I woke up, that I would continue to do what I have always done, but I would do it via the internet.  I could still make a difference from my bed.   I realized that if I did not do what I was put here to do, I would be turning my back on myself, literally snapping my spine and rendering me paralysed in every sense of the word.
Ken Wiwa, the son of Ken Saro-Wiwa, a human rights activist who was executed in November 1995 in Nigeria, asks in his book "In the Shadow of a Saint", "What is it that compels a man to risk everything - his life, his family, the lives of people around him - to make a stand for human rights?"
I am trying to answer this question. It is not religion. It is a deep horror of injustice that drives me to do something about it.　 It is also a feeling of being the only one to really see the pain and abuse, the feeling that not enough people are prepared to do something or to take action...this is what drives me to take more and more risks.　 It is a feeling of not having enough time and of a job that is too large to complete.　It is a feeling of living in the moment because tomorrow will be too late.　 It is a feeling of every life is precious and if nothing is done about the other out there, then nothing will be done about those around me.　 It is a feeling of "if I look out for those, then these of mine will be OK".　 It is a deep resentment of the abuse of others.　 It is a loathing of unkind and uncompassionate behaviour.　 It is the contempt for those who sit by and do nothing, knowing that while they look on they are as much to blame as the abuser and the oppressor.　 It is a feeling of frustration that pushes me to the limits of my endurance. It is an all-consuming love of the people, of those who need protection the most.
I was born with an aversion to injustice – it is in my DNA and I can do nothing about it.  It is who I am, sick or not.

Wednesday, January 3, 2018

A Right Royal Christams Fuck Up

What a fucked up Christmas and New Year I had.  I had been to see my prisoners on Saturday and had kept myself as well as possible, taking every precaution not to get some opportunistic disease.  On Sunday I was going to sing Christmas Carols in the St Augustine’s Cathedral and attend mass afterward.  On Christmas day I was going to spend the day with my darling friend/mother.  Everything was wrapped and ready.
I visited my prisoners and there was a draught so I asked one of them if I could use his orange jacket which he very gallantly put around my shoulders.  The wardens walked up and down and passed us a number of times and no one had a problem with it until one over-weight, bad assed female with cellulite oozing out of her uniform ordered me to remove the jacket at once.   I don’t know if that draught had anything to do with it.  We got home at noon and by 3 pm I was having rigours and my temperature was over 39.  I was a sick as an unwanted township dog.  The ambulance was called and I was taken immediately to ER.  The doctor did a chest X-ray and took some blood, put up a drip through my portacath (in my chest and directly into my heart) and we waited to see if the temperature would drop.  After a number of hours – it felt like most of the night, the doctor gave me a prescription for antibiotics and something to keep the temperature down and told me I could go home.  When I started seeing my cupboard door handles climbing up the cupboards, I started to become afraid and sent Patrick to fetch my mother.  What a night!  Shitting in the bed, having rigours and convulsions and seeing things that are impossible – pictures don’t swop places with themselves!  She is 85 this year and she nursed me and held me and cleaned me over and over, brought hot water bottles, fed me with warm tea and even with her buggered back, she was bent over me and holding me tight as I shook and convulsed.  
The next morning was the day before Christmas.  I was feeling like shit on a stick but determined to get to my mom for Christmas day.  The food had been prepared, the cakes baked and the tinsel was ready with the Christmas tree.  The phone rang and the lady on the other end of the line asked to speak to me.  She said, "Ms Lang, you were here at the ER last night and was seen by Dr Boesak.  He sent some of your blood away to be cultured.  The results are back and you are to immediately be admitted to the hospital.  Do not take your time, please come as soon as you can.  We are waiting for you".   Wow … then it was a mad scramble to pack some stuff together to get to the hospital.  I had septicemia.   That is when your blood becomes over-run with bacteria and puss is in your bloodstream.  At that point they did not know where it came from – more cultures had to be made before we could find the source of the problem, but Dr Stern, my physician was on duty and he decided to give me the most expensive and most potent antibiotic via my chemo port to run 9 hours a day.   I was isolated in a room on my own and was supposed to be barrier nursed so that the infection did not spread to others in the hospital.  Well, some nurses adhered to the barrier nursing and others did not give a damn.    
My first night was a nightmare – I was alone and could not find the bell to ask for help.  I had crapped all over myself and I had to clean myself up and put the sheet in one corner and use the top sheet and then it happened again, and again, and again … until I had used all the adult disposable nappies I had with me.  I was now in the shit literally.  I eventually found the bell and pressed it.  The nurse asked me what I wanted and I told her I needed linen as I had messed the bedding and all over myself.  She walked out and back in with linen draped over her arm.  She put it down on the chair and walked out.  I was still seeing strange things on the walls and doors, I was still having rigours and was so cold I thought I would die from the cold although I knew my temperature was back up to the 40’s.
And Christmas day arrived – my mom and my stepfather sat alone at their home with all the food prepared.  She could not come and visit me because she had a sore throat which could make my situation worse.  I don’t know what Patrick did although I know he was at the hospital.  I remember my son coming to see me and at least I remembered to say Happy Birthday to him.   But most of the day was just a blur that I cannot really remember.   I do remember the Xmas lunch.  It was pretty poor – four small carrots, five small potatoes the size of my thumb, a chicken drumstick and a piece of ham.  The pudding was … you guessed it.  Jelly.
On the 29th it was my physician’s last day at work as he was retiring so he discharged me with my drips so that I could do them myself at home.   They had now found the cause of the septicemia.  It was Enterobacteriaceae septicemia.    I can’t ever remember being so ill – knowing that it was my body lying there but at the same time looking at myself and wondering why I am still alive and how can anyone have to suffer like this.  Where was God in all this because all I did was pray over and over again – I prayed my moments, my minutes and my hours away.
I am still recuperating and still have spiking temperatures – so those positive thoughts of yours and your prayers are desperately needed.    I am chronically ill, but it is these acute infections that are going to be the end of me.  The doctors are quite blasé about it – they tell me quite openly that one of these infections are going to kill you one day.
I have not been on FB as most of you will have gathered by now.  I just don’t have the energy.  I have received lots of inbox messages, many the same with little variety – but it is the thought that counts.  I won’t be answering you all back – please accept this as my thanks and my wish for you too to have a good new year.
I will be back on FaceBook when I feel well again … or as well as my ‘normal’ is.


Monday, November 13, 2017

I am Still Winning

I had a few small miracles I wanted in my life before I die – one of them was to swing on a swing and feel the wind blow my hair back.  This weekend I did that – it was not quite what I had imagined, but I went for a swing in the park.  I had been sleeping for most of my days over the previous week, but that need to swing was overpowering.  There are other small miracles I want; like learning to fly a kite.  That will have to wait a while.
This morning I decided I would bath, knowing my nurse was in the house, I thought I could do it alone.  I got in slowly, sat on my knees and then slid each leg out from under me and I bathed.  But I could not get out.  I tried and tried and then I started shouting for Vimbai.  She was outside and did not hear me.  So I sat in that bath, every now and then attempting to get out on my own.  I lost the battle, shouting once more for Vimbai.  She came and it was a struggle for even the two of us to get me out.  I was exhausted to the point that she had to dry me, dress me and put me back in bed.

Another piece of my independence has gone and I value my independence so much.  
And I cry for one more thing I can’t do on my own.  There is less and less I can do on my own and for myself.  Many say miracles can happen and I could be healed, but I no longer believe that.  It is what it is.  That is why my miracles are small; like swinging and flying a kite.   I am more determined than ever to die on my own terms.  I will not allow myself to be totally dependent on others for my every breath, nor am I prepared to suffer what is insufferable.  But until then, I will continue to write and to connect to others via social media.  While I can still do that, I am still winning. 

Friday, November 3, 2017

Small Dreams

Chronic illness is one of the most isolating experiences.  You become isolated because people just do not understand your reality.  They slowly move out of your life and get on with the lives that you used to be part of.  You feel left behind.  I am not lonely, but I am alone in this reality of mine.
People don’t understand me anymore – we talk past one another.  They have no idea of what my reality is like, but I remember what the reality of a healthy person is.  I hang my head in shame now that I remember my chronically ill grandmother and how little attention I paid to her.  She just could not leave her bed so did not take part in any family activities and would lie in a darkened room day after day.  Yes, I remember bathing her and sitting and talking to her as a young adult, all the while hoping that the visit could be over.   I understand now how isolated and neglected and starved of human company she was.    I have social media but in those days, there was no such thing.  How lonely she must have been.
Words cannot describe the horror of waking up sick every day and of being sick every minute of every day.  Some days are better than others.  Some days I can handle the pain but I get those days when I think I can’t take it anymore and just want to end it all. 
Miracles do happen and I am defying the odds to become part of the “normal” world again.  The verdict of “there is no cure” just refuses to sink into my brain to take me to a place of acceptance.  Every day I live by grace, minute by minute and some days hour by hour.  How I wish I could go to a park and swing like a child again, to walk on the sand picking up bits of driftwood and seaweed or to learn to fly a kite.  My dreams are no longer big dreams but rather dreams of normal things that I know will lift my spirits.  I know I won’t be able to walk on a beach again, but I could sit and watch the waves.  I know that I could be taken to a park and I know I could sit on a swing and soar through the air as though I have no care in the world and I know that I could be taught to fly a kite.  

But who will take me?  Who will teach me?  Who will hold my hand while I pursue these dreams of mine? 

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. 

Thursday, June 29, 2017

The Truth Teller - The Impimpi...Why Now?

The year I got sick 
It has taken years of chronically and often life-threatening illnesses to strip away slowly at everything that I held dear in my life.  And suddenly I was facing an adjustment disorder.  I have my own psychology degrees, so it has been a case of healer, heal thyself.

Apart from ill-health, there has been enormous financial strain with added expenses which have made us fly kites under a carpet.   It is not easy to start a new life at the age of 61 for my husband, starting from scratch in a country he had not lived in for over 20 years.  

With what I thought was an amazing opportunity, I got an online computer job writing web content for the SEO of a pharmaceutical company – yes, writing about Viagra and all the generics for erectile dysfunction.  No one else wanted the job, so I took it.  I know one hell of a lot about impotency and soft and flaccid penises now.  The remuneration was wonderful and for a month, we were starting to float.  The following month, the person in charge dropped the ball and all the writers were fired, without pay and with immediate effect.  After chasing the story down it was found that the pharmaceutical house was nothing but an online drug dealer.  So that went out the door.  Back to flying those kites under the carpet.

Then I got very sick. I was drowning in my own fluid.  Discovery are amazing – they have come to the party and I am being home nursed with drips and all the paraphernalia I need.   While I have been lying here, writing and thinking and pondering and reflecting over the last three weeks, I have had to take a good long hard look at what I want from life.  Being one in ten million people with this disease does not make me special – it makes me a problem.

The crying and the grieving has been done.  It is time to dry the tears and get on with the business of living.  My spirit does not belong in this body. I am like the old lady struggling to move down the street, but her shadow is a young girl dancing with abandon.

I made the decision to share my life, every bit of it - the nice, the good, the ugly, the bad, the not too bad and the not too nice; leaving nothing out…telling the truth 100% of the time.
There are many reasons for my decisions. Some are:
  • Giving the abused child of my heart a voice 
  • Allowing my soul to soar with freedom
  • Making myself transparent
  • To be truly authentic I must be brutally truthful about everything that has been, is and will be in my life 
  • To allow those who have been damaged by part of my own past to come to terms with their healing as well 
  • To show that child abuse affects a person their whole lives but that there is a way to become a survivor
  • To become a ferocious activist for prisoners - particularly for those who are incarcerated for crimes they did not commit
  • To inspire, help, encourage and provide my own brand of quotes for people to use to reflect on their own lives and to just have a good laugh
  • To do what I love and love what I do and that is to write – so the books will come, the blogs will come and … we shall see what the good Lord Himself has in store for me.

There will be those who will not like what I write, but that is their business and not mine.  They do not have a gun pointed at their heads forcing them to read what I write.   But I do know now that there will always be thousands more people who will appreciate truth rather than the bullshit that is spoken so often

I want my life to have meaning and I want to leave a legacy with my stories for my grandchildren to know who I was one day.  What better way than to tell my own truthful stories. 
I am now a freedom writer!  And probably an impimpi as well!

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. 

Saturday, July 16, 2016

Shattered - The Story of the Wrong Kind of MD


To the doctors I see, I have this advice for you.  Please retain some humility.  If a patient says “Something’s not right”, they are usually right.  If you don’t know the answer, ask for the opinion of another colleague.  Swallow your pride and make your patient the priority.  Think carefully about how your orders affect the patient and the way the patient is nursed.  Your orders or the way you give them can easily contribute to the suffering and discomfort.  Be mindful of the way you speak to patients, their families and the nurses.  Your arrogance and superiority are not becoming of a caring human being.  You also make mistakes but your mistakes can be deadly or at the very least can do more harm than good.     
Shattered is a deadly honest look at what it means to be at the mercy of the wrong kind of doctor.   You can purchase the book from this link:  http://megabooks.co.za/wp-content/uploads/2015/10/Shattered.jpg 

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