I was shocked to discover that when you have a disability and end up in a wheelchair you become a second class citizen. We were on holiday a week ago visiting family in Christchurch, New Zealand and due to my illness, I was compelled to use a wheelchair to get around. The wheelchair I was borrowing was self propelled and did not have breaks that a person pushing you could access. This made moving around challenging.
The Shopping Centre we were wondering around had a section where the floor sloped and maneuvering a wheelchair down this section difficult. I did not know how to slow the wheelchair down myself as I have never had to use a wheelchair for extended periods of time. My husband was forced to hold the wheelchair and use his own strength to slow us down.
The Centre was 2 stories and had various points where you could access the second floor. However, there were only 2 points that a wheelchair could access the second floor. A lift at the far end of the Centre or the travelator in the centre of building. We had had enough of a problem trying to maneuver the wheelchair down the sloped section of the Centre. The travelator was a bridge to far. We were not brave enough to try. So once we had walked / rolled though the second floor, we then had to return to the far end to access the lift. We then had the challenge of getting the wheelchair back up the sloped section of the Centre.
There were also a number of shops that I was unable to access as their merchandise shelving was so close together that there was no room for a wheelchair to maneuver.
I also found people did not notice you and some people almost walked into me as I was no longer at eye level.
I was really saddened by this and feel for all my fellow chronic illness warriors who have no choice but to use a wheelchair all the time.
To all my able bodied friends, be thankful you aren’t a second class citizen.
Sunday, 24 December 2017
Monday, 20 November 2017
“It's a strange strange world we live in master jack!!!!!!”
This is the opening line to the song
Master Jack by 4 Jacks and a Jill.
“Jesus, Jesus help me, I'm alone in this
world, And a fucked-up world it is too.” - Wake up Dead Man by U2
Both these lyrics describe how I am feeling at
the moment.
I learnt a new word. “Transableism”.
Transableism is a term that refers to
the desire to acquire a disability through choice rather than happenstance.
This move may be as a re-alignment of their physical body with their perceived
identity, or as a form of body modification for aesthetic or other reasons.”
I was horrified to discover this. People
who are able bodied wanting to be disabled.
Most people I know who are disabled, for
whatever reason, would not wish their lives on anyone, including their worst
enemy. If it were possible, these people can have our bruised, broken and
shattered bodies and we will gladly take theirs.
All of my fellow pain warriors, who are
forced out of the workforce and become house bound due to our wrecked bodies,
would love to be able bodied again.
I cannot comprehend how an able bodied
person would identify as disabled. It goes against all logic and common sense.
I hope these people get the
psychological help they need and return to normal lives.
EDIT:
I have since read this article about disabled people's daily struggle with normal everyday tasks. Why, oh why would you willingly put yourself in this position?
https://www.theguardian.com/inequality/2017/nov/15/whats-life-really-like-for-disabled-peopld-disability-diaries-reveal-all
Saturday, 1 July 2017
Life : you never know what is around the corner
Firstly, I have to say thank you to my truly amazing husband and daughter for their support during the last
week and a half. I would never have coped without them. To my step children who are so far away, thank for your continued online support. It also means so much to me.
For the last few months, my life has been planned. I was going to travel from Port Hedland to Perth towards the end of July as I am scheduled to have a knee replacement. This is due to the damage done to my knee over many years and the effects of Ehlers-Danlos Syndrome (EDS).
However, life - particularly my life does often work out like it should.
June 21:
My day started as any other day would. Later I wished my aunt and cousin-in-law happy birthday on-line. Went shopping in the afternoon for a few items of food that we needed. When I got home, I felt feint, so I sat for a few minutes before unloading the frozen items I had purchased. It was then I noticed the sharp pain in my chest. I tried to lay down to see if it would ease. I even had an antacid as it kinda felt like heartburn. After 30 minutes of the pain not going away, I called my husband. Fortunately he was in the office and not down track. He was able to leave immediately and come home. When he arrived, he asked where I wanted to go and I said Hospital. He rushed me to the South Hedland Emergency where I was admitted almost immediately. The ECG did not show any major changes to my heart beat, but to be safe, I was given blood thinners and a blood test was done. The blood test showed that I had had a heart attack. I was admitted to the hospital and informed that I would be flown to Perth the next day by the Royal Flying Doctor Service (RFDS). My husband did not leave my side until I was admitted and then he went home to get me pj’s and medication that I needed that the hospital did not have. He returned and stayed with me for as long as he could. Saying goodbye was hard. I did not want him to leave.
22 June:
I was woken fairly early and told I was definitely flying to Perth and that I was first on the list to be transported. Based on this information I told my husband to get on to the early commercial flight from Port Hedland to Perth. As he was about to take off at 09:00, I was collected from the hospital and taken to the airport in an ambulance. 9.6km. I was then handed over to the RFDS. The nurse who was to escort me was really great and did everything in his power to make sure I was comfortable and that I was not in any pain.
Then began the journey from hell. I was strapped into a really small stretcher and hardly able to move unless I was sat up by the nurse. We flew from Port Hedland to Carnarvon. 715km. At Carnarvon we refueled and flew to Shark Bay. 117.63km. In Shark Bay we collected another patient for transport. We then flew to Geraldton. 332km. At Geraldton, both of us were of off loaded from the plane and we waited for a second plane to arrive. I was then transferred to the second plane. We then flew to Moora to collect another patient. 247.16km. Once the patient had been collected we then flew to Jandakot Airport in Perth. 162km. We landed at Jandakot at 17:10. I had been in transit for 8 hours and 10 minutes. And yet my journey was not yet complete. I still had a 25 minute trip in the ambulance to get to Royal Perth Hospital. 24km.
Fortunately I had already been assigned to a bed, so I did not have to go to the ED. I was taken straight to the Coronary Care Unit. I was seen by a Cardiologist that evening. The best sight of the day was my husband and daughter walking past the window of my room and walking into my room. Getting hugs from them was the best feeling ever.
My poor husband, who landed at 11:00, had to wait another 6 hours before he could get into a car and come and visit me. It was really stressful for him too. Thank goodness I was able to keep him updated throughout the day as to where I was and what was happening. My daughter did an amazing job of tracking my flights on the computer which helped ease my husbands concerns.
Distance travelled by ambulance : 33.6km
Distance travelled by air : 1573.73km
23 June
I saw more doctors and had more discussions. It was agreed that I would have an echocardiogram done before the angiogram. Both were inconclusive. After further examination of the angiogram it was concluded that there had been a blockage in a branch off the artery that had already has a stent and that the blockage had disappeared. The angiogram was really painful as they went through an artery in my wrist. I had to wear a compression sleeve for over 2 hours. I have some really lovely yellow bruising from it. Again the highlight of my day was seeing my husband and daughter. Without them, I would have gone crazy. I was woken every 4 hours, day or night, to have ob’s done.
24 June
Saw various doctors again and it was decided that I needed a cat scan and a MRI. After the cat scan results, the doctors decided that a MRI was unnecessary and I could be discharged. Coming home to my daughters house and being able to lay down on a comfortable bed and easy my aching body was a huge relief. Having my husband hold me without any wires getting in the way was a balm to my soul.
30 June
Still in Perth. I was not able to fly for 6 days after I was discharged. We are flying home on Monday. My husband and daughter have been my rock. They have kept me sane and fed since I was discharged. Thank you both for doing so much for me.
Thursday, 1 June 2017
May is Ehlers-Danlos Syndrome (EDS) Awareness Month.
Well May has come and gone and I have
done nothing to raise awareness this year.
This is very unusual for me. Since my
diagnosis, I have posted information about EDS every year. The more people are
aware of the condition, the more people are likely to be diagnosed correctly
and treated accordingly.
Unfortunately, not many Doctors are
interested in learning about EDS. I took my young adult daughter to a new
General Practitioner (GP) within the practice to get a prescription for pain
medication. When we mentioned the EDS, she was oh ok, I have heard of it, but
never thought I would ever see a patient with it. And that was where the
conversation on EDS ended.
As GP’s are our first contact with the
medical field, one would think that they would be interested in meeting
patients with these rare conditions and take some time to ask questions and do
a physical examination to make themselves more aware of the condition and what
factor to look for in future patients.
On the flip side. I was on a flight from
Sydney to Auckland and seated next to my husband was a Paediatrician. I
politely asked if I could ask a medical question. After their consent was
given, I asked if they had heard of EDS. The Dr had heard of it and wanted to
know why I had asked? I told them I have EDS. The Dr immediately asked if they
could examine my hand. The Dr then spent a few minutes moving my fingers and
hand around checking my flexibility.
The Dr on the plane was far more
interested in EDS than the GP who was physically treating my daughter.
No wonder so many people who have EDS go
for so long before they are diagnosed. I was 44 and my daughter was 18 when we
were officially diagnosed. I have had many misdiagnoses throughout my life. No wonder it is so hard to get diagnosed.
Friday, 10 February 2017
Women VS Women VS Women VS Men
All three events have one very disturbing
thread in common. Women criticizing women.
The amazing march of millions of women
across the globe protesting against Trump’s treatment of women as second class
citizens.
A FaceBook post went viral attacking
women for marching. Written by a woman, who was ashamed of the marchers as they
have ‘so many rights’ that third world women don’t.
Cindy Lauper attacked Madonna’s speach
after the event saying ‘I don’t think it served our purpose.’
This is a post from women to women from
the march - “I hope you get raped” WHAT THE FUCK. Would you say this to a woman you care about? So why say it to a woman who has a different opinion.
In the documentary “The Hunting Ground”
women verbally attacked the rape victim as she has accused a rising football
star. All the rape victims were trolled. Many of them received death threats. A
large majority of the online abuse was from women.
Lady Gaga has been attacked for many
reasons since her halftime Super Bowl performance. She has been fat shamed,
politically denounced and an attempt to create a war between Pink and her
failed.
Pink’s public response to internet
chatter that she would take offence at Lady Gaga’s aerial performance at the
Super Bowl.
For the record: Let's squash this before
it even has a chance to be a thing.... Lady Gaga killed it yesterday. Her voice
was powerful and beautiful, her outfits were on point, choreography stellar,
her heart was in it and she sang about love and inclusiveness, all in front of
millions and millions of people. Let's celebrate a woman who has the guts to
jump off a roof and stand up there in the first place.
Who cares if I flew first? Cause I
didn't! Cirque and Peter Pan been in the air for years!
Now can we get back to the real
controversy? The one where our so called leader is stripping our humanity away
minute by minute...
All women need to learn from Pink’s
response to the Internet. 💜💛💜
Women all over the world struggle
against male supremacy. Attacking each other, demeaning each other aids the
male supremacy agenda.
It allows this: rapists being given
lenient sentences by male judges.
I am in NO WAY saying all men are
supremacists. There are truly great men who treat their partners with respect
and dignity. These are the men we should celebrate and learn from. I am blessed
to be married to such a man.
Ladies, wake up!!! As long as we are
attacking each other, no matter the issue, male supremacy wins!
Monday, 9 January 2017
Oh how I wish I was a Unicorn!
If I was a Unicorn, I could escape the
cold Harsh reality of life!
Unfortunately, that cold harsh reality
crashed into my ‘unicorn life’ really hard today and I had to respond.
Today FaceBook exploded with pro and
anti Meryl Streep content after her Golden Globe Acceptance Speech. I watched
the speech and was moved to tears. My future does not hold much hope. I know
deep within my soul I will eventually have to rely on a wheelchair to move
around. To have the future leader of the USA and supposedly of the free world,
a billionaire to boot, mock those less fortunate than him, makes my future even
dimmer.
I have had to already face the hard
reality of life and stop being a ‘productive member of society’ when my body
could no longer cope with working 9 to 5, five days a week. I now sit at home
unable to work, relying totally on my husband for financial support.
I have days. Like this morning, where it
takes me hours to get out of bed as I am so exhausted and in so much pain it
hurts to even move. Then when I can finally face the world, I get bombarded
with this.
It beaks my heart.
Thankfully, Meryl Streep stood up publicly for all of humanity. She is my hero!!
Thankfully, Meryl Streep stood up publicly for all of humanity. She is my hero!!
I did not just sat down and write this
without research. I “Googled it” and
checked which websites confirmed and which denied the story. I have listed two
websites below, one confirming and one denying the story.
A website I do trust
confirms this story. Snopes.com
Those who are anti Meryl are mainly quoting this website. Catholics4trump.com.
You can read both articles and choose
your side. I do not expect every one to agree with me. However I do know a
large majority of those of us who live online as our chronic illnesses prevent
us from doing so much will agree with what Meryl had to say.
Here is a link to her speech, or below
it is the speech. I have highlighted the section that Meryl discussed the
mockery of a disabled person.
Please sit down. Thank you. I love you
all. You’ll have to forgive me. I’ve lost my voice in screaming and lamentation
this weekend. And I have lost my mind sometime earlier this year, so I have to
read.
Thank you, Hollywood Foreign Press. Just
to pick up on what Hugh Laurie said: You and all of us in this room really
belong to the most vilified segments in American society right now. Think about
it: Hollywood, foreigners and the press.
But who are we, and what is Hollywood
anyway? It’s just a bunch of people from other places. I was born and raised
and educated in the public schools of New Jersey. Viola was born in a
sharecropper’s cabin in South Carolina, came up in Central Falls, Rhode Island;
Sarah Paulson was born in Florida, raised by a single mom in Brooklyn. Sarah
Jessica Parker was one of seven or eight kids in Ohio. Amy Adams was born in
Vicenza, Italy. And Natalie Portman was born in Jerusalem. Where are their
birth certificates? And the beautiful Ruth Negga was born in Addis Ababa,
Ethiopia, raised in London — no, in Ireland I do believe, and she’s here
nominated for playing a girl in small-town Virginia.
Ryan Gosling, like all of the nicest
people, is Canadian, and Dev Patel was born in Kenya, raised in London, and is
here playing an Indian raised in Tasmania. So Hollywood is crawling with
outsiders and foreigners. And if we kick them all out you’ll have nothing to
watch but football and mixed martial arts, which are not the arts.
They gave me three seconds to say this,
so: An actor’s only job is to enter the lives of people who are different from
us, and let you feel what that feels like. And there were many, many, many
powerful performances this year that did exactly that. Breathtaking,
compassionate work.
But there was one performance this year
that stunned me. It sank its hooks in my heart. Not because it was good; there
was nothing good about it. But it was effective and it did its job. It made its
intended audience laugh, and show their teeth. It was that moment when the
person asking to sit in the most respected seat in our country imitated a
disabled reporter. Someone he outranked in privilege, power and the capacity to
fight back. It kind of broke my heart when I saw it, and I still can’t get it
out of my head, because it wasn’t in a movie. It was real life. And this
instinct to humiliate, when it’s modeled by someone in the public platform, by
someone powerful, it filters down into everybody’s life, because it kinda gives
permission for other people to do the same thing. Disrespect invites
disrespect, violence incites violence. And when the powerful use their position
to bully others we all lose. O.K., go on with it.
O.K., this brings me to the press. We
need the principled press to hold power to account, to call him on the carpet
for every outrage. That’s why our founders enshrined the press and its freedoms
in the Constitution. So I only ask the famously well-heeled Hollywood Foreign Press
and all of us in our community to join me in supporting the Committee to
Protect Journalists, because we’re gonna need them going forward, and they’ll
need us to safeguard the truth.
One more thing: Once, when I was
standing around on the set one day, whining about something — you know we were
gonna work through supper or the long hours or whatever, Tommy Lee Jones said
to me, “Isn’t it such a privilege, Meryl, just to be an actor?” Yeah, it is,
and we have to remind each other of the privilege and the responsibility of the
act of empathy. We should all be proud of the work Hollywood honors here
tonight.
As my friend, the dear departed Princess
Leia, said to me once, “take your broken heart, make it into art”.
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