The Magic of Music, Part 1

Music is such a powerful thing. Done right, it can invoke such strong reactions in the listener. It completely changes the tone of a scene in a movie or tv show, can get you moving on a run, or make a long drive a little more exciting.

Guess where I’m going with this.

That’s right, an endo playlist!

Sometimes, you want some songs that resonate with the pain and loneliness. Sometimes, you want something to offer hope, or buoy up your fighting spirit. Below, I’ve set out five songs that I love to listen to when I’m having a bad time.

Because this is a really huge post, I’m splitting it into two.  Keep your eyes peeled (what a weird phrase) for part 2 and another five songs shortly.

1) Head Above Water, by Avril Lavigne

I have been an Avril fan since I was a little quasi-emo teen. This song is definitely not classic Avril, but it really showcases her amazing vocal talent regardless. Written in the depths of her fear and hopelessness as she battled Lyme Disease, you know listening that this woman gets it. There’s despair, there’s hope, there’s pain, there’s resignation, there’s a cry for help. It has it all.

I’ve gotta keep the calm before the storm
I don’t want less, I don’t want more
Must bar the windows and the doors
To keep me safe, to keep me warm
Yeah, my life is what I’m fighting for
Can’t part the sea, can’t reach the shore
And my voice becomes the driving force
I won’t let this pull me overboard
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
So pull me up from down below
‘Cause I’m underneath the undertow
Come dry me off and hold me close
I need you now, I need you most
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
Don’t let me drown, drown, drown
Keep my head above water, above water
And I can’t see in the stormy weather
I can’t seem to keep it all together
And I, I can’t swim the ocean like this forever
And I can’t breathe
God, keep my head above water
I lose my breath at the bottom
Come rescue me, I’ll be waiting
I’m too young to fall asleep
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Keep my head above water, above water

My favourite line: “So pull me up from down below, cause I’m underneath the undertow.  Come dry me off and hold me close, I need you now, I need you most.”

Listen when: you feel like no one understands

2) Heart Full of Scars, by Rebecca Black

This song isn’t about chronic illness, but it had such a fighter vibe. It’s about someone just owning their situation and doing what they need to get through it. It always peps me up a bit.

Stop
Don’t tell me how to feel
These scars will never heal
Overnight
I’m just searching for what’s real
It’s hard enough to deal
With life
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
Done with doubt and overthinking
Wait for it to sink in
I’m enough
Sick of try’na to be your perfect
The pain is never worth it
Never was
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)

 

Favourite line: “I won’t feed into your dark, I’ll keep on loving with a heart full of scars.”

Listen when: you need a pep up after someone gives you a hard time about your illness (even if it’s you)

3) Full of Grace, by Sarah McLachlan

Darling of the late 90s, Sarah McLachlan specialises in heartbroken, wistful songs. Full of Grace probably isn’t about endometriosis, but it perfectly captures the devastating impact endo can have on relationships.

The winter here’s cold and bitter
It’s chilled us to the bone
We haven’t seen the sun for weeks
To long too far from home
I feel just like I’m sinking
And I claw for solid ground
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength and all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love
So it’s better this way, I said
Having seen this place before
Where everything we said and did
Hurts us all the more
Its just that we stayed, too long
In the same old sickly skin
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength
And all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love

Favourite line: “I know I could love you much better than this.”

Listen when: you are sad about your relationship and want to wallow a bit (may make you sadder)

4) Where My Heart Will Take Me, Russell Watson

Like most people who know this song, I first heard it in the title sequence for Star Trek: Enterprise (a hugely underrated series, in my humble opinion).  It is very different from the title sequence of any other Star Trek, but I love it.  The sequence itself is a tribute to human innovation and our explorer’s spirit (as is the fan-made version above), but that’s a story for another day.  This is about the song.  It’s a song that always fills me with hope, courage to continue, and makes me think that maybe something better is just around the corner.  It inspires me to keep going.  It’s just very positive.

The original title sequence was a very truncated version of the song – the one I’ve put here is the full version.

It’s been a long road
Getting from there to here
It’s been a long time
But my time is finally near
And I can feel the change in the wind right now
Nothing’s in my way
And they’re not gonna hold me down no more
No, they’re not gonna hold me down
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dream come alive at last
I will touch the sky
And they’re not gonna hold me down no more
No, they’re not gonna change my mind
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, faith of the heart
I’ve known the wind so cold, I’ve seen the darkest days
But now the winds I feel, are only winds of change
I’ve been through the fire and I’ve been through the rain
But I’ll be fine
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got strength of the soul
No one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long road

My favourite line: “I’ve got faith to believe I can do anything”

Listen when: You need someone to believe in you

5) Healing Incantation, sung by Mandy Moore in Tangled

I’m a big fan of Disney, and Tangled is, if not my favourite, definitely near the top of the list for me.  It’s so pretty!  Flynn is so funny!  Gothel is so wicked!  Rapnuzel’s hair!  The lanterns!  I love it.

Anyway, this song really, really resonates with me.  When she sings it, I think along with it like a prayer.

Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine
Heal what has been hurt
Change the Fates’ design
Save what has been lost
Bring back what once was mine
What once was mine

Favourite line: “Bring back what once was mine”

Listen when: You really, desperately want healing

 

Integrity

To me, integrity is one of the most important things a person can have.  All the values I’ve done monthly quote collations of are important, don’t get me wrong, but integrity is definitely near the top of the list.  It often requires many of the other virtues to enact.  In its simplest form, it is being true to yourself and doing the right thing, even when that is hard or detrimental.

It’s important to me in my personal life, but it’s also really important to me professionally.  Believe it or not, lawyers have an incredibly strict code of ethics.  One of my jobs is regulating practitioners who fall short or outright violate that code.  The code makes it clear that our first duty is to the court, and our second to the client.  Even if it hurts your client, you cannot mislead the court; even if it hurts you, you must serve your client to the best of your ability.  So, despite what TV may suggest, a lawyer (in Australia, at least) cannot go in front of the court and argue that their client is innocent of a crime if the client has told the lawyer that they are guilty.  If a client tells you one thing, you cannot tell the court another, and if your client insists that you must, you need to withdraw from the case, no matter how many dollarydoos you’ll get by staying in it.

There’s a whole bunch of other things in that code that we have to uphold – we have to be courteous, not bring the profession into disrepute, act in a timely manner, etc.

I’m really passionate about this, so it bothers me massively when I see people (particularly my fellow lawyers) breaching our ethical code, failing to uphold or enforce the law, or generally taking the easy way out just because the hard way is, well, hard.  My family and colleagues have had to sit through several rants recently when I got outraged that someone was behaving in a way that I did not think demonstrated integrity.  I hope I never do lose that outrage, even if it bores the people around me, because this is important.

As a result, this is a month I was really quite excited to do the quotes for.

Please excuse my cover picture of the doughnut, by the way.  I use a free stock photo engine for my cover photos, and the only thing for “integrity” was a picture of circuit boards, so in the end I had to go with “goodness”, which offered me many pictures of attractive men and one of a doughnut.  I’m pretty into doughnuts, so I figured that at least that would be true to myself, which is part of integrity…so, yes.  A doughnut is now the symbol of integrity.

One final side-note: I’ve decided to start linking the author of the quote to a short thing about them in case you like a quote and want to find out more about the person who said it.  Let me know in the comments if that is useful or just unnecessary and boring.

Anyway, the quotes.

  1. “Supporting the truth, even when it is unpopular, shows the capacity for honesty and integrity.”  – Steve Brunkhorst
  2. “One of your most prized possessions is integrity; if this is you, then you should never compromise it.” – Byron Pulsifer
  3. “Power really is a test of character.  In the hands of a person of integrity, it is a tremendous benefit; in the hands of a tyrant, it causes terrible destruction.”  – John Maxwell
  4. “Make living your life with absolute integrity and kindness your first priority.” – Richard Carlson
  5. “Live so that when your children think of fairness, caring and integrity, they think of you.” – H. Jackson Brown Jr
  6. “Be impeccable with your word.  Speak with integrity.  Say only what you mean.  Avoid using the word to speak against yourself or to gossip about others.  Use the power of your word in the direction of truth and love.” – Miguel Angel Ruiz
  7. “Admitting one’s own faults is the first step to changing them, and it is a demonstration of true bravery and integrity” – Philip Johnson (If I have correctly attributed this quote, I recognise the irony of quoting a Nazi sympathiser and possible Nazi agent who was utterly lacking in integrity, and I think it is important to acknowledge that there is absolutely no integrity in just paying lip service to the concept.  If I’ve attributed this wrongly, then I apologise to the Philip Johnson who actually said it and sincerely hope he isn’t a Nazi.)
  8. “The personal cost of keeping your own ethics sound and true may seem a bit of a burden at times but that is a minimal price to pay to be true to yourself.  There is absolutely no advantage to changing or altering a set of ethics that portray a person of value and integrity.” – Byron Pulsifer
  9. “When you make a commitment to yourself, do so with the clear understanding that you’re pledging your integrity.” – Stephen Covey
  10. “A single lie destroys a whole reputation of integrity.” – Baltasar Gracian
  11. “One of the truest tests of integrity is its blunt refusal to be compromised.” – Chinua Achebe
  12. “Six eseential qualities that are the key to success: sincerity, personal integrity, humility, courtesy, wisdom, charity.” – Dr William Menninger
  13. “Having a grateful disposition brings about other virtues, including generosity, compassion, humility, joy, wisdom, trust and integrity.” – Bree Miller
  14. “We learned about honesty and integrity – that the truth matters…that you don’t take shortcuts or play by your own set of rules…and success doesn’t count unless you earn it fair and square.” – Michelle Obama
  15. “Integrity is doing the right thing, even when no one is watching.”  – C. S. Lewis
  16. “A life lived with integrity – even if it lacks the trappings of fame and fortune – is a shining star in whose light others my follow in the years to come.” – Denis Waitley
  17. “You can’t, in sound morals, condemn a man for taking care of his own integrity.  It is his clear duty.” – Joseph Conrad
  18. “Integrity is making sure that the things you do and the things you say are in alignment.” – Katrina Mayer
  19. “With integrity, you have nothing to fear, since you have nothing to hide. With integrity, you will do the right thing, so you will have no guilt.” – Zig Ziglar
  20. “Characterise people by their actions and you will never be fooled by their words.” – Anonymous
  21. “Whoever is careless with the truth in small matters cannot be trusted with important matters .” – Albert Einstein
  22. “Knowing what’s right doesn’t mean much unless you do what’s right.” – Franklin Roosevelt
  23. “People may doubt what you say but they will always believe what you do.” – Anonymous
  24. “Real integrity is doing the right thing, knowing that nobody is going to know whether you did it or not.” – Oprah Winfrey
  25. “To know what is right and not do it is the worst cowardice.” – Confucius
  26. “To thine own self be true, and it must follow, as the night the day, thou canst not then be false to any man.” – William Shakespeare
  27. “What is left when honour is lost?” – Publilius Syrus
  28. “No one can be happy who has been thurst outside the pale of turth.  And there are two ways that one can be removed from this realm: by lying, or by being lied to.” – Seneca
  29. “There are seven things that will destroy us: wealth without work; pleasure without conscience; knowledge without character; religion with sacrifice; politics without principle; science without humanity; business without ethics.” – Gandhi
  30. “May integrity and uprightness guard me as I wait for you.” – Psalm 25:2

What is the most valuable virtue for you?

 

June Gratitude

I feel like I’ve prefaced every monthly gratitude post recently with a note that it’s been a hard month.  Once again, though, it has been.  My Prostap injections have stopped working – my doctor thinks this one was a dud – so I’ve been dealing with a solid month of pain accompanied by a really icky cold (lots of lovely mucus – yay!).

I think this makes it even more important that I take a moment to stop and think about the things this month that I am grateful for.

1)  Cake!

I successfully baked three really nice cakes this month.  One was a packet mix, so I can’t be too proud of it, but seriously, if you want a deliciously moist, rich, vegan chocolate cake, just add a can of Coke to the stuff in Betty Crocker’s Devil’s Food Cake and bake it, and voila, instant deliciousness.

I also made this funfetti cake from It Doesn’t Taste Like Chicken.  Unfortunately, my sprinkles vanished into the cake and just left little blobs of yellow behind, but the cake itself was delicious, and I’m really proud of the rainbow icing.  Sure, it has some holes in the bottom layer, but it’s the first time I’ve ever tried to get fancy with buttercream, so I’m proud of myself.

Rainbow Cake (2)
Image description: a violently rainbow cake with colours ranging from red at the bottom through the rainbow to purple at the top.  It has rainbow sprinkles on top and is sitting on a silver plate in a fridge.  Please excuse the shocking photography – the bright light in the fridge was the only place I could really capture the intense colour.  

My third cake was for my mother’s birthday, and was the tastiest of the three.  I used this incredible, zingy lemon cake recipe from Lazy Cat Kitchen.  I cooked it slightly too long but it still turned out really well – very soft and fluffy on the inside and soaked in sweet lemony flavour.  Definitely a “make again”.

2)  Basketweaving

My workplace celebrated Reconciliation Day last month by holding Aboriginal basketweaving classes for employees, taught by an Aboriginal woman who travelled out on country to learn the techniques and is sharing them with us.  It’s really relaxing and it’s nice to have something to do with my hands when I’m watching tv or listening to an audiobook.  I’m trying to make a basket for Max, which is a little tricky because he is a) fat and b) prone to eating the materials I use, but I’m pushing through.

3) Max is ok

IMG_7842.jpg
Image description: a fluffy ginger cat with green eyes and a slightly angry expression.  That’s Max.  He’s not actually angry, he just has a resting bitch face.  He’s so chill that today he let me pull him down onto his side and rub his tummy for a good ten minutes.  For many more Max pics follow my instagram – OffBalanceSpinningTop.  

Last month I wrote about how Max had to have dental surgery.  He’s all recovered from that now, but gave me a scare this month when I found blood in his urine.  After a rushed vet visit and some medication, it turns out he probably just had sterile cystitis, and is back to peeing normally (i.e. not on all my nice blankets) and no longer in pain.  That’s a huge relief.

4)  A good boss

Chronic illness is terrifying, particularly when you love your job and want to earn the respect of colleagues you admire through hard work, but have to take off unreasonable amounts of time due to situations like my current Prostap issue.  I am still super stressed about it, but less stressed than I would be if my amazing boss wasn’t so good about this whole poopy situation.

5) Fulfilling a goal

One of my three goals this year was to read the Old Testament.  I have officially finished it.  I’ll admit, it mostly wasn’t thrilling.  The prophecy books (Isiah, anything after Jonah) are mighty confusing unless you have some reference material to explain what the heck they are talking about.  Lots of doorways getting measured and people dying of famine and then everything getting better and people being happy again.  I really enjoyed the books with strong female characters, though – Ruth, Esther, the early parts of Judges – and some of the books, like Lamentations, have some truly beautiful imagery.  There’s a lot of good stuff in Psalms and Proverbs, too.

Anyway, I’m proud of finishing it.  I’m on track to fulfil Goal 2 (getting SCUBA certified) next month, even if I’m doing really poorly with Goal 3 (learning Arabic).

6) Pretty dresses

Image result for review australia chateau floral
Image description: a beautiful brunette girl (not me, although I am also a beautiful brunette girl) in a burgundy dress with purple and pink flowers on it.  This is Review’s Chateau Floral dress, and I love it.  Photo by Review.  

This month has been all about the comfort clothes.  Maternity jeans, turtlenecks, flowing trousers.  Today, I realised I haven’t worn an item of clothing just because I love it for a very long time, and that makes me sad.  So, I made an effort, grabbed one of my absolute favourite dresses (pictured above), and wore it just because.

7) Clean water

It’s a simple thing to be grateful for, but it’s so important.  Clean water is one of the greatest guarantees of health (in terms of freedom from things like cholera, anyway, if not from endo) and is vital to sustaining life.  It also tastes good.  If I’m thirsty, I can just turn on the tap.  People in Flint in the USA still don’t have clean water after years of complaints, and that is in the very developed world.  People in other parts of the world have to walk for miles to get water, and today I literally bathed in litres of it.  A few weeks ago, I went for a swim in a 50m pool.  That’s more water than some people will ever see.  Even in Australia, animals and people suffer every time there is a drought.  Clean water is something we cannot take for granted or be sufficiently thankful for.  Clean water is life.

8) Assassin’s Creed

Image result for assassins creed 2
Image description: the torso and head of a man in white Renaissance clothing with a red fancy sash and silver belt, a brown cloak and two knives sticking out of bracers on his wrists.  The text says: Assassin’s Creed II

I finished the first Assassin’s Creed game some time last year after literally years of procrastinating, and I loved it.  This month, after slightly less time, but still a lot of procrastinating, I finished the second one.  The first one sees you play an Assassin in the Middle East during the Crusades; in the second, you are in Renaissance Italy.  Both games are heaps of fun and absolutely stunning.  Seriously, the detail that goes in to creating the huge cities that these games are set in makes them worth playing even if you don’t want to stab lots of bad guys and save innocents from corrupt guards.  I so badly want to go it Italy now.

9) One year

I’ve been writing this blog for one whole year now.  I’ve been up and down with it – it’s really hard when I’m not well, because my motivation and creativity take a big hit – but I have stuck to it.  I have more than 100 followers, and I’m super grateful to each and every one of you.  I can’t tell you how happy it makes me when I see someone like an article.  Please keep on liking and sharing, and let me know in the comments if there is any particular content you want to see more of.  I want to keep this blog relevant to the experiences of people with endo, adeno and chronic pain, and it really helps me to know what people want to read.

10)  Today

Sundays are really difficult for me, because I spend a lot of time stressing about how I’m going to get through another week, and how exhausted I will be when I have to get up at 6am, and whether I’ll even be able to fit into my clothes tomorrow.  Today I woke up especially depressed and I kept getting worse.  However, I managed, largely thanks to my husband, to pull my socks up (actually I wore tights, but whatever), put on my pretty dress and do my face and hair, leave the house, breathe some fresh air, buy the vitamins I’ve been neglecting, and eat some good food and drink some delicious hot apple cider.  It was really, really hard to actually do that, but I did.  I’m proud of that.

 

What are you grateful for this month?  Have you baked anything delicious lately?  Share in the comments.

The Financial Impact of Endometriosis

Last year, the SBS programme Insight did a segment on endometriosis, estimating that it costs Australia at least $7.7 billion per year.  Our problem uteruses (uteri?) are bad for the economy.

The impact at an individual level, though, is arguably far more devastating.  Not in dollar amounts, perhaps – the idea that I would ever lose out on $7.7 billion dollars is estimating just a smidge high – but in terms of what it costs us as a percentage of our expenses.  Now, as another financial year winds to a close, seems a perfect time to discuss that.

(I want to apologise if I’m slightly incoherent.  I have another cold and I’m muddle-headed, dizzy, nauseated and slightly rambly, and my hands keeps trembling so I’m making some exciting typos.)

I don’t have super statistics about what endometriosis costs each sufferer.  I can only really talk about how it effects me, and the anecdotes I hear from others in the community who mention missing work, having to quit jobs, etc.

For me, missing work is by far the biggest impact.  I burn through any paid sick leave I have extremely quickly.  If it isn’t endo pain, it’s an infection or illness because my overburdened immune system can’t stand up to even the most pathetic germs.    That means that on days I don’t work, I don’t get paid.  Currently, my Prostap injection has failed me, and I’m home sick yet again because I can barely stand up and I’m so swollen that clothes actually hurt.  Also, the abovementioned cold.  I’ve made it to work one day this week.  That means I’m looking at another pay cycle at effectively half pay.

Of course, for sufferers who can’t work or can only work part-time or in casual roles, the financial impact is even worse.  I’m very lucky to have a good job with a good wage.  Many people can’t say the same.  Some have the fight of their lives to try and get the Disability Support Pension, which is not much, and have to live off Newstart in the meantime, which I understand is considerably less and puts you below the poverty line.

Regardless of whether I get paid or not, the cost of my Prostap is $358 every six weeks.  I’m fortunate enough to have private health insurance, so I get $100 back.  (It’s worth noting that Prostap is on the PBS if you have prostate cancer, so it will only cost $48 then.  If you have endo, no PBS benefits for you).  Add to that the cost of the hormone replacement therapy, which is $50-$100 monthly depending on the pharmacy.  I have actually stopped taking it because I didn’t find it that helpful, but it was an additional cost for several months.

Then, of course, there is the cost of surgery.  If you pay privately, you are looking at thousands.  If you go on the public waiting list, you could be waiting over a year depending where in Australia you are – more time with more pain and therefore more lost income and more money spent on pain management.

In between surgeries, there are multiple appointments with doctors and specialists.  Bulk billing doctors are a treasure, but if you can’t get those and don’t have a healthcare card, it’s usually at least $40-$50 per visit after the Medicare rebate.  If you need to keep going to the doctor to get medical certificates, new prescriptions or things like injections (such as Prostap or Zoladex) that adds up very quickly.  I’ve put off doctor’s visits and even buying medications before because of the cost.

Tax time is generally the only time you get a break.  My absences usually result in me being overtaxed and getting a bit back at tax time, but that’s one lump sum a year.  If I get anything back this year, it will be going straight to paying off some debt, and anything left over I will spend on wild items like moisturiser, because I’m currently scraping dregs out of jars rather than spending out on something like that that I view as a luxury, even though my face might crack and fall off without it.

I do want to finish on a slightly more positive note, though.  These are some methods I have used to try and minimise the impact on my savings.  They won’t work for everyone – you have to a) have savings, and b) have enough to put into them – and I’m by no means a financial planner, so please don’t take them as gospel.  I acknowledge my privilege here in that I am relatively well-off, and I beg you not to try and do things you can’t afford because of the idea that if you aren’t saving you’re a terrible adult.  If you can’t afford it, you can’t afford it.

1)  I budget by percentages and priorities, not dollar amounts

I carefully budget what my pay will go towards.  However, because I can’t guarantee I’ll be getting the same amount each week, I allocate percentages rather than figures.  If I say I have to put $500 towards savings a week (a pipe dream even at full pay) then I’m going to be struggling when I need to pay for petrol and groceries but only got paid $600.

My biggest percentage goes towards the mortgage, with smaller percentages for my savings account (to be touched only as a last resort), my emergency account (to be drained before I touch my savings but only if I have nothing left in my spending account), and charity (I can’t engage in much else in the way of service or activism, and giving to charity is a vital part of helping me feel like I’m making a difference despite that, so it’s non-negotiable).  I budget a particular percentage for paying off debt, but since it is to my parents and they are Very Nice People they are happy for me to not repay them if something else comes up like a vet bill (thanks Max) or unexpected medication or a small pay, so I have a little leeway that fortnight.

2) I quarantine my savings

As described above, I have two savings accounts – one for actual savings, which gives me a higher interest rate as long as I make regular deposits and don’t remove money from it, and one for emergencies, which has lower interest but allows me to remove money as needed.  I top both up at each pay with the same amount, but will always take from my emergency account first.  If I don’t have to take from it, great, I’ll earn more interest than I would with the money in my spending account, but if I do, it’s there and not being spent on other stuff.

I have absolutely got to the point before where I’ve blasted through my spending account and my emergency account (usually when big bills coincide with big medical issues) and touched my savings before, but this helps minimise the chances of that happening.

Of course, if you don’t have the income to split like this, this may be a terrible idea.  If I get paid a really small amount, I will skip putting stuff in the emergency account and put it in savings instead.  If I get paid even less than that, neither account gets a dollar.  You’ve got to be flexible with any system and put the money where it needs to go.

3)  I pay attention to my super

I was lucky enough to attend a financial planning seminar for women in law last year, and one thing that was emphasised is that women, particularly young women, don’t pay enough attention to their super.  One the poorest demographics in Australia currently are old women, who often have very little or no super and who have not taken an interest (or not been allowed to take an interest) in their own financial matters.  You should always be in involved in your own finances.

In terms of super, the advice given was this – if you are with a solid super fund, which most industry funds tend to be, and you are many years away from retirement age, don’t be afraid to put some of your money (not all!) in the higher risk option for your super fund.  The risk is relatively low, because it isn’t all your money and you are many years away from needing it, and the payoff can be high.  As you get older, move it all into lower risk options.  This will hopefully maximise the amount you get at retirement in a way that doesn’t expose you to unnecessary risk.

I stress that this was advice given to me by financial planners, not something I’m just saying.  It is entirely at your own risk if you do this and I’m not personally advising it (or advising against it).  It is something I do, however, because I want a good retirement to make up for the difficulties I’m having now.  That’s when I imagine I’ll actually have the health to do fun stuff, and I’d like to have the wealth to back it up.  Don’t sue me if doing this fails for you.

4)  I do my best not to feel guilty when I can’t meet my financial goals

So, this one is no use as a savings tip, but it is super important.  Financial pressures are real and they suck.  Often we have to give up on things we want and abandon or delay savings goals in order to pay the bills or buy food.  I avoid articles about “how I paid off all my student debt and owned seventeen houses by the time I was 25!” because they are usually a) written by someone with no idea how privileged they are and b) make me feel bad, not motivated.  You really can only do your best.

 

How has endo affected your finances?  How do you do your best to combat it?  Let me know in the comments!

 

Lifeline’s Response

A few weeks ago I wrote a letter to Lifeline about one of their Australian ads (you can read it here).  They have now responded.

The email reads:

“Thank you for providing your feedback about the Lifeline HOPE billboards.  I am so sorry that they have made you feel the way they do, this is certainly not our intention.  We had aimed to provide a strong message of hope, which is the undercurrent of all our communication campaigns.  To date, I have received plenty of positive feedback about this campaign, your feedback is the first negative, but it has weighed on me heavily. Thank you for taking the time.

The intention behind the poster was that people would see the ad and be encouraged to hold on with HOPE for whatever the reason may be that they need it.  In doing so, I had hoped to encourage a more compassionate Australia. For those in chronic pain, I had hoped to impart hope in the continuing advancement in scientific discovery and the dedicated medical teams who are working in the field. The furthest thing from my intention is to cause anyone harm or to experience isolation.

Ella, this ad placement has been provided pro bono, so I am unable to change where it is placed or how often.  I can give you the undertaking though that the next iteration of  posters I am given the opportunity to post I will ensure there is a different hopeful message.

I am sorry for the distress this has caused you, I hope my response will give you some solace.

Kind regards

Ina”

Ina is the National Manager of Communications and Public Affairs for Lifeline.

Whilst I still think the ad is deeply insensitive and demonstrates a lack of thought, and I don’t buy the “continuing advancement in scientific discovery” thing (anyone with a chronic illness knows that waiting for medical advances is about as hopeful as waiting for a tsunami in the Gobi Desert), I am gratified to have received a reply.  I also very much appreciate the apology.  I do hope that they bear the message in mind and give thought to those of us with chronic pain in future ad campaigns.

I strongly encourage anyone with the spoons to call out ableism or exclusion when they see it.  People without intimate experience of disability or chronic pain don’t even think to double check on whether their language or actions are inclusive – goodness knows I rarely did prior to actually having endometriosis and working to educate myself.  Every time we point it out is hopefully a time the other person goes away to think about it and takes the time to educate themselves and change their behaviour in future, and hopefully become an advocate for us as well.

Keep on keeping on, endo warriors.

Nevertheless, She Persisted

Last month I shared my favourite quotes on the topic of consistency.  Today I want to write about her cousin, persistence.

Like consistency, persistence is absurdly hard for the chronically ill.  I swear, every time I get in the rhythm of something and think I’m finally achieving things, I get sick or have a flare or need a new dose of depot or something that throws everything out of wack.  It can be really hard to claw your way back into life after a derailing like that.  Other times, it can be hard to fight on through the black cloud of misery that attaches to the reality of the word “chronic.”  But, by and large, we do.  Nevertheless, they persisted.

Now, I have a lot of problems about the rhetoric chucked around about persistence.  So much of it focuses on “success”, and seems to define success in a pretty narrow, business/entrepreneurial way.  For me, I’ve succeeded if I’ve made it through the day upright and the kitchen is only mostly messy instead of buried under dirty dishes.  I also don’t think that we should practice good qualities, like persistence, because they bring an inherent reward – we should do it because it is the right thing to do, and because being able to say “I persisted” is a reward in and of itself.

I also have some problems with quote #8, because I think, when the battle is so very hard, even a strong person can be beaten , so I’d ask people to take that one with a grain of salt.  That being said, I do think persistence is a demonstration of strength, even if the strong don’t always succeed at it.

As always, I’ve tried to include quotes that look at different angles of the subject – most quotes on persistence are just variation on “persist and you’ll succeed!!!!”  Sometimes, though, we need to know when persistence has just become stubbornness, and when it will hurt us rather than help.  We also need to acknowledge that you can persist only so long without ceasing.  Sometimes, persistence includes resting for a while before you pick your burden back up – it’s the getting back up that makes it persistence, not the notion of doing it constantly.

Regardless (or nevertheless), here are some quotes about persistence to get you through the next little while:-

  1. “Persistence pays off.” – Jeffrey Dean Morgan
  2. “Knowing trees, I understand the meaning of patience.  Knowing grass, I can appreciate persistence.”  – Hal Borland
  3. “Nothing in this world will take the place of persistence.  Talent will not: nothing is more common than unsuccessful men with talent.  Genius will not: unrewarded genius is almost a proverb.  Education will not: the world is full of educated derelicts.  Persistence and determination alone are omnipotent.”  – Calvin Coolidge
  4. “We are made to persist…that’s how we find out who we are.”  – Tobias Wolff
  5. “Success is not the absence of failure; it’s the persistence through failure.”  – Aisha Tyler
  6. “Never let your persistence and passion turn into stubbornness and ignorance.”  – Anthony J D’Angelo
  7. “A little more persistence, a little more effort, and what seemed hopeless failure may turn to glorious success.”  – Elbert Hubbard
  8. “Permanence, perseverance and persistence in spite of all obstacles, discouragement and impossibilities: it is this, that in all things, distinguishes the strong soul from the weak.”  – Thomas Carlyle
  9. “Throughout human history, in any great endeavour requiring the common effort of many nations and men and women everywhere, we have learned – it is only through seriousness of purpose and persistence that we ultimately carry the day.  We might liken it to riding a bicycle.  You stay upright and move forward so long as you keep up the momentum.”  – Ban Ki-Moon
  10. “With patience and persistence, even the smallest act of discipleship or the tiniest ember of belief can become a blazing bonfire of a consecrated life.  In fact, that’s how most bonfires begin – as a simple spark.”  – Dieter F Uchtdorf
  11. “Some people mistake grit for sheer persistence – charging up the same hill again and again.  But that’s not quite what I mean by the word ‘grit’.  You want to minimise friction and find the most efficient way forward.  You might actually have more grit if you treat your energy as a precious commodity.”  – Reid Holfman
  12. “To make our way, we must have firm resolve, persistence, tenacity.  We must gear ourselves to work hard all the way.  We can never let up.”  – Ralph Bunche
  13. “Persistence is to the character of man as carbon is to steel.”  – Napoleon Hill
  14. “The real issue is not talent as an independent element, but talent in relationship to will, desire and persistence.  Talent without these things vanishes and even modest talent with these characteristics grows.”  – Milton Glaser
  15. “In life, an abundance of confidence gives us higher motivation, persistence, and optimism and can allow us to accomplish things we otherwise might not have undertaken.”  – Whitney Tilson
  16. “Persistence and determination are incredibly important.  But sometimes you need to analyse the situation and understand when you’re wrong.  You need to be able to cop to being wrong, learn to change, and continue to grow as a human being.”  – Sasha Grey
  17. “You may encounter many defeats, but you must not be defeated.  In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.”  – Maya Angelou
  18. “I will persist until I succeed.  Always will I take another step.  If that is of no avail I will take another, and yet another.  In truth, one step at a time is not too difficult.  I know that small attempts, repeated, will complete any undertaking.”  – Og Mandino
  19. “A failure is not always a mistake.  It may simply be the best one can do under the circumstances.  The real mistake is to stop trying.”  – B F Skinner
  20. “You go on.  You set one foot in front of the other, and if a thin voice cries out, somewhere behind you, you pretend not to hear, and keep going.”  – Geraldine Brooks
  21. “If you won’t fly, then run; if you can’t run, then walk; if you can’t walk, then crawl, but whatever you do, you have to keep moving forward.”  – Martin Luther King Jr
  22. “If you are going through hell, keep going.”  Winston Churchill
  23. “Courage doesn’t always roar.  Sometimes it is the quiet voice at the end of the day whispering, I will try again tomorrow.”  – Mary Anne Radmacher
  24. “It does not matter how slowly you go as long as you do not stop.”  – Confucius
  25. “My strength lies solely in my tenacity.”  – Louis Pasteur
  26. “as long as there is breath in you – persist.”  – Bernard Kelvin Cline
  27. “Perseverance is the hard work you do after you get tired of the hard work you already did.”  – Newt Gingrich
  28. “To persist with a goal, you must treasure the dream more than the costs of sacrifice to attain it.”  – Richelle E Goodrich
  29. “Life is made up of a series of tests, trials and great opportunities.  Some are momentary, but most take endurance.”  – Michael K Simpson
  30. “In order to persist, you have to ensure that you surround yourself with positivity.”  – R L Adams
  31. “Character consists of what you do on the third and fourth try.”  – James A Michener

Do you have a favourite quote that pushes you to keep going when you think you can’t take another step?  What makes persistence a battle for you?

Next month I’ll be collecting quotes about integrity, so stay tuned.

May Gratitude

As my regular readers know, this year I have set myself the challenge of thinking of ten things to be grateful for each month.  Endometriosis can be so devastating and all-consuming that there are days when it doesn’t feel like there is anything good or untainted by it.  By doing this, I hope to train my brain to keep looking for the good and the hopeful.  So, for the month of May I am grateful for:-

1)  The right to vote

Person Dropping Paper On Box
Image description: a shadowed hand puts a folded piece of paper into a sealed box with a slit cut in the top.  

In Australia, non-Aboriginal women didn’t gain suffrage at a Commonwealth level until 1902.  Aboriginal people, male and female, were denied suffrage in Commonwealth elections until 1962.

I may not like election periods, and I may not be 100% enthused by the ideas of any of our political parties, but I am very grateful that I get to have my say regardless.  It may not count for much and it may not change the fate of the country, but it is part of something bigger and more important that ultimately dictates what direction we will go in as a nation for the next few years.  It is powerful and important.

2)  Clever creatives

Every day most of us consume some sort of media for entertainment.  I personally love snuggling up on the sofa with my husband, a cosy blanket, and one of our animals, and watching, reading, or listening to something that catches my imagination.  I am so grateful to the people who come up with the ideas for books, tv, movies, podcasts and music.  They are clever and talented and fascinating and their imaginations are vital to supporting mine.

3)  Good doctors

Red and Black Stethoscope
Image description: a coiled stethoscope and red enamel heart on a reflective white surface.  

My last post detailed my recent adventures with the local GPs in my attempt to get rid of my sinus infection (finally gone!).  I may not be enthused about one the GPs mentioned in that post, but I am overwhelmingly grateful for the good doctor who sorted me out in the end.  They are worth their weight in gold.  I propose kidnapping and cloning.

Disclaimer: I do not advocate kidnapping people and subjecting them to scientific experiments.

4)  My mother came home

Readers of this blog will know how much I rely on my mother when I am having a bad flare or just feeling particularly wussy.  She was in the UK for all of April, but she came back in early May and I cannot properly articulate how much safer and more comfortable I feel knowing she is in the same city as me.

5)  Chai lattes

Six White Ceramic Mugs
Image description: a top-down view of six mugs with different shades of coffee in them.  

It’s a really small thing, but they make me happy, all spicy and creamy and warm and frothy.  I think it’s important to appreciate the small things as well, after all.  I’m lucky enough to work within a very short walk of two cafes that serve them.  One is sweeter and uses the best soy milk brand in Australia, in my humble opinion (Bonsoy), and the other is spicier and more flavourful, though less creamy.  So not only do I get my chai lattes, I get choices too.  Happy me.

6)  Mutual interests

How good is it when you meet someone and you both love the same stuff and can talk about it for ages?  I wrote my Arts thesis on feminism in vampire novels (or the lack thereof), and it turns out that one of my colleagues studied similar topics when she was at uni.  She also loves cats, video games, and fantasy novels.  Talking to her is endlessly fun.  All my colleagues are fantastic, funny, intelligent, kind people, so it’s great to be able to connect on another level as well and make good friends.

7)  Being the “victim” of (really good) culinary experiments

My mother-in-law is a very keen cook who loves to change up recipes and make them suitable for my dietary requirements, so I have recently been the willing victim of some of her most delicious experiments.  Picture, if you will, cannelloni stuffed with sweet potato, spinach, tofu ricotta and roast hazelnuts, a Moroccan-style roast vegetable bake with creamy eggplant and succulent zucchini, and a lemony-shortbread tart case stuffed with eggplant, pea, and basil goodness and topped with roasted pine nuts.

8)  Cat snuggles

My poor Max had to have dental surgery in late May.  Normally, due to yowling like a banshee and smacking doors repeatedly when he wants to get through them, he sleeps in the garage at night, because otherwise he’ll do the above regularly while we are trying to sleep.  However, the garage is a little chilly, so after his op he had to sleep in the spare room, and to stop him yowling, so did I.  The non-good part of this is that Max doesn’t just sleep the night through like a sensible person, and likes to walk back and forth over my face with little chirps to let me know he was still awake and enjoying himself (he comments on everything).  The good part was, when he wasn’t doing that, he was snuggled under the blankets with me with my arms around him, all warm and soft and purring because he loves me and he loves cuddles.  It’s a wonderful thing to be loved by an animal, especially when they want to be snuggled like a teddy bear.

9)  Good computer games

Image result for the forest
Image description: a pair of legs in a blue skirt lie at an awkward angle on the ground outside.  There are little plants all around.  Yellow text reads: The Forest.

Throughout May, I was particularly obsessed with a game called The Forest.  I’m not very good at it, partly because it is a horror game, and, as much as I love horror, I’m a total wuss.  The game is stunningly beautiful (it is set in the lush Canadian coastal forest) and also stunningly creepy (there are dripping, echoing caves, giggling cannibals, and horrifically deformed mutants).  The thought and care that has gone into the creation of both the world and the storyline is obvious, and the result is addictive.

10)  White privilege

To be clear, white privilege doesn’t mean that I have an easy life because I am white, or that I am a bad person because I am white.  It simply means that the same institutional barriers that non-white people face do not burden me.  People looking at me will never make assumptions that I am unintelligent, criminal or dangerous because of the colour of my skin.  Statistically I am going to live longer, get paid more, and have better opportunities.  People in power throughout the country are, by and large, the same racial background as me.

It is incredibly important to remember this, especially as the week of 27 May was Reconciliation Week.  Aboriginal people still face issues that I will likely never experience.  They are more likely to be illiterate, arrested, assaulted, homeless, and experience violence and addiction.  They still suffer racist abuse from white Australians, and their language and cultural traditions are being eroded.

I don’t mean to say by this that I am glad to not be Aboriginal.  That’s not it at all.  I don’t have any particular feelings about the colour of my skin.  What I am grateful for is the privilege that I experience as a result of it, even as I long for the day when that isn’t so.

Sorry for Being a Slacker

Hello, gentle reader.  I apologise for the lack of posts of late.  Like most people with a compromised immune system during flu season, I have managed to acquire myself my very own pet illness.

Thankfully, in this case, it isn’t flu.  It was a cold, and then it turned into another sinus infection, and it has just stayed that way for two weeks.  I anticipate that I will get at least one more before we kiss August goodbye, and I would not be surprised if I get multiple between now and then.

The super fun part of the infection, you’ll be surprised to learn, has not been the horrifically sore, swollen throat, the aching in my face that feels like goblins are trying to shove my eyes out of my sockets, or even the crushing exhaustion (I’m kind of used to that anyway).  It hasn’t even been the joint aches.

It’s been yet another disappointing encounter with a doctor.

I used to see this wonderful doctor at my local bulk-billing place who has consistently fixed every problem I have taken to him.  I trust him deeply.  Unfortunately, he only sees patients on a walk-in basis now, and I needed to actually book in.  I saw one doctor who is quite nice and who gave me the good antibiotics, but a week later I was still sick and getting worse so I went and saw another dude because the first doctor wasn’t available.

That doctor prescribed me weaker antibiotics, told me to use a treatment my favourite doctor had specifically told me was not beneficial and was possibly harmful, and then:-

  1. Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
  2. Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
  3. Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
  4. Told me that if my Australian specialist had refused to perform TPPE (he didn’t even know what it was) that’s because the surgeon knew what was best for me;

and just generally did his best to make me feel guilty about taking my medical care into my own hands with absolutely no understanding of what it took to do so.  Ok, that’s unfair – he was trying to be thorough and ensure that I was seeing someone for my endo – but he was unintentionally extremely condescending and made me feel like I had to defend my choices to change doctors and go to the UK to get surgery I literally could not get in Australia.

It’s another lesson in “if you don’t know the full story, stop judging.”

Yesterday I got sick of the weaker antibiotics not working and my sickness continuing to worsen, so I went as a walk-in and saw my favourite doctor.  He gave me the good stuff again.

Thank goodness for the good doctors.  Boo to the bad ones.

An Open Letter to Lifeline

CW: chronic pain, suicide

Other Australians may have seen an advert by Lifeline cropping up on our bus shelters, billboards and other media over the past few months.  I have a big problem with this advert.

This is it:

Image may contain: one or more people, text and closeup
A blue image of an adult’s hand holding a child’s hand.  The text reads  “Hold On Pain Ends.  We’re here for you.  Call: 13 11 14 lifeline.org.au”.

I think my issue with this as a sufferer of chronic pain should be fairly self-explanatory, but if it isn’t, please see the letter I have written to Lifeline below.

Dear Lifeline

I have recently noticed a number of adverts for Lifeline with the slogan “HOPE: Hold on, pain ends.”  This was also posted to your facebook page on 5 March 2019. I want to ask that you reconsider this slogan.

Whilst I am certain that your intention is good and that these words are important to many people considering suicide, I wonder if you have fully considered the potential impact of these words on the portion of the population for whom pain doesn’t end – those of us with chronic illness, disability or chronic pain.

In 2018 a study was done in the US examining the impact of chronic pain as a factor in suicides.  It showed that chronic pain was a factor in 9% of suicides.  Australian doctors have linked an increase in suicides amongst young women to chronic pelvic pain diseases such as endometriosis.

I am chronically ill and live with daily pain.  One of my diseases is endometriosis.  My illnesses are likely to impact me for the rest of my life, unless I have major surgery that comes with its own raft of difficult side-effects.  As long as I have these diseases, I am likely to continue to experience daily pain.  Every time I walk past your advert, I am reminded of this fact.  My pain won’t end.  It’s a further twist of the knife that is the reality of being chronically ill.  Every time I see your ad, I feel a stab of bitterness, sadness and despair.

I wonder if it might not be even worse for someone with chronic pain who is suicidal.  They might see your sign and think, “If pain ending is a reason not to commit suicide, perhaps the fact that my pain won’t end is a reason I should.”

Your advert fails to acknowledge those of us living in daily physical pain.  At best, it ignores the risk of suicide amongst the chronic pain community.  At worst, it suggests that lives with unending pain aren’t worth living.

I know from discussions with others in the community that I am not the only person who feels this way.  On a personal level, I don’t know how many more times I can bear to walk past your advert without bursting into tears.  There is one right outside my work – I see it several times a day and it doesn’t get any less hurtful.

I know that it wasn’t Lifeline’s intention to exclude or hurt anyone, but that is the practical effect of this advert and that is why I am writing to beg you to remove that slogan as soon as possible.  Please consider the impact it has on disabled and chronically ill people.  We are often forgotten and excluded in so many little ways that add up to a culture of discrimination and inaccessibility.  Please don’t contribute to that.

Kind regards

Some people might suggest that I’m overreacting.  Poo to you, I say.  Poo to you.  Words matter.  Words can hurt.  These words do.

Some might say, “Well, of course Lifeline didn’t mean that it applies to you.”  That’s the point!  They don’t say that!  They just make a blanket statement that completely excludes the chronically ill.

If you share my feelings about this advert I would strongly encourage you to also write to Lifeline and ask them to change this advert and ensure that it is replaced with something with a better, more inclusive message.  Please feel free to use my letter as a template.

I have requested a response.  I’ll let you know if I get one.

2019 Election: Health and Disability

Unless you have been living under a rock for the past month, you are probably aware that we have a federal election happening on 18 May.

Now, I have my own views on who to vote for and on the policies of the major parties.  I definitely encourage everyone to read up one who is saying what about all the important matters.  However, there are two policies particularly relevant to those of us with endo that I want to summarise here: health and disability.  I’m going to outline the policies of Liberal, Labor, the Greens, One Nation and the United Australia Party (aka the Clive Palmer party).

This should not be treated as a how-to-vote guide.  A party may have great policies on health but terrible policies on another area that matters just as much.  It’s also not going to capture my views on the parties: this is literally just a summary of what their stated policies on health and disability are.  I also acknowledge that other issues directly impact women with endo, such as issues around homelessness and employment.  I’m only going to touch on those where I think they will have a very noticeable impact on people with chronic illness, rather than a general one.

If you are struggling with keeping up with all the different views of the many, many parties contesting, I encourage you to have a peek at Vote Compass.  It can be really helpful in figuring out how you align with the major parties on big issues.

Now, without further ado and in no particular order:-

The Liberal Party

The Liberal Party, for my non-Aussie readers, is our current government.  They fall to the right on the political spectrum, generally speaking.  So far in the election they have been running on an economic platform.

The Endometriosis Action Plan has come to be during the Liberal Party reign, although it received perhaps its strongest support for Labor Senator Gai Brodtmann, who has been a fierce advocate for people with endometriosis.  As far as I am aware, the plan received bipartisan support.  Although the Plan puts some money towards improving care, the majority of funding goes to education and awareness.

When it comes to welfare, the Liberal focus appears to be on those who can work, but are currently unemployed, rather than those who can’t.  Their website talks about initiatives such as cashless welfare cards and work the dole programmes.  I strongly encourage those with endometriosis or chronic illness to research these initiatives and determine whether they are likely to hurt or help.

In their health policy, Liberal pledges to:-

  • commit up to $29.1 billion to hospitals by 2025, including increasing funding to specialist care for chronic pain treatment;
  • continue funding Medicare and the PBS;
  • invest $308 million in reducing the cost of medication for people using multiple medications;
  • increase access to MRIs;
  • devote $4.8 billion to mental health care; and
  • Put an additional 3,000 nurses and allied health professionals in rural medical practices.

The page also talks about reforms made over the past 4 years, but it is not clear from the page whether that funding and policy will continue.  One assumes that that is the intention but I don’t want to put words in their mouths.

When comparing themselves to Labor they emphasise that they have committed greater funds during their term than Labor did during theirs, and that Labor once blocked 7 medications from being included on the PBS.

The Labor Party

The Labor Party website is a little less easy to navigate, with policies laid out singly rather than grouped by area, like “health”, but I’ve gleaned what I can and summarised below for you.

In disability, Labor pledges $10 million to disability advocacy (although it isn’t clear whether endometriosis or chronic illness more generally would be considered a disability).  They aim for a 6% disability quota in the APS by 2022.  They say they will reform the NDIS to close the gap between it and mainstream services.  They will also amend the Terms of Reference of the Royal Commission to include redress.  They will invest $300 million into students with a disability – again, it is unclear how disability is to be defined in this context.

Under Hospitals, Labor pledges to restore the $2.8 billion of funding to hospitals that they allege the Liberal Party is cutting.  They also pledge $500 million to reduce emergency room waiting times.  They state that they will close the gap in health care between rural and metropolitan areas.  They will increase staffing at Medicare and Centrelink, which would hopefully improve access and decrease wait times.

They state that they will reverse Liberal cuts to penalty rates.  I include this because many people with chronic illness find themselves working in casual positions due to the unpredictability of their illness making full- or part-time work impossible.

In the mental health area, Labor will invest $200 million in Headspace.

In reproductive rights, an area the Liberal Party doesn’t touch on at all, Labor will work to decriminalise abortion, and (significantly for those who use contraception to manage their endo) increase access to contraceptives, particularly long-acting ones such as the implanon and mirena.  They also directly mention endometriosis, saying that they will be

“Addressing specific reproductive health issues such as endometriosis, polycystic ovarian syndrome, transvaginal mesh and female genital mutilation.”

They have committed to continuing the Endometriosis Action Plan.

The Greens

The Greens have kindly collated all this information on just one page, which made accessing it nice and easy.  From this page you can download individual, more specific plans.  Say what you will about their policies – this website is very helpful.

The Greens say that they will fund a “truly universal” public health system, and reduce hospital waiting times (not clear if this is for surgery or emergency rooms or something else).  They will do this by funding Medicare – there is a big emphasis in their platform of ensuring that people don’t feel they have to pay for private insurance to access quality care.  It is worth reading that document – it includes details such as a $3.5 billion plan to increase care for people with chronic physical and mental illness, including $750 worth of care and a national framework for diagnosis and treatment.

They will increase mental health funding and work to destigmatise mental illness.

They pledge to raise Newstart and the New Parenting Payment by $75 per week, which will help those people with chronic illnesses who are too sick to work but can’t meet the very strict requirements for the DSP and so get stuck on Newstart long-term.

They will increase general accessibility for people with disabilities.  It’s worth noting that the Greens do have a Senator who uses a wheelchair (Jordon Steele-John), who would likely appreciate the systemic barriers people with a disability can face.

The United Australia Party

I love you, my readers, but I don’t love you enough to listen to all of Clive Palmer’s speeches in the hope one of them mentions health.  They don’t talk about them in the title.  You can do that here if you want to.

However, I have scoured his “Vision for Australia” document looking for policies.  Basically he keeps talking about boosting the economy through his various strategies, and mentions health only tangentially.  He will

  • build more hospitals;
  • reduce income tax (helpful for those sickies healthy enough to earn enough to pay tax but who are struggling financially);
  •   commit $80 billion in funding to health for the next three years;

and that’s all I could find.

I’m also not 100% clear when this document was published, as the URL includes “2015” and the stats all seem to be from around then.

In summary, the UAP is very much about the economy and getting the money – the details on how it will be spent may be available but if it is, it’s not easily found on the website.

One Nation

One Nation has a very pretty website, but not a lot of detail on health or disability.  There is definitely more of a focus on immigration, Islam and refugees.

All I could really find in the health sphere is support for sick people accessing medical cannabis, although they don’t outline specifics of how that support looks (legalisation, decriminalisation, licensing, etc).

In terms of accessing Centrelink, they want to introduce an identity card to fight against people rorting the system.

That’s all I could find on their website.  Really, that’s it.  If someone else finds more, please let me know, because this just seems lacking.

 

I hope that may have been helpful to those who didn’t want to sift through reams of election promises to find out how folks with endo would be effected from 19 May.  Please remember to vote properly and consider voting below the line to control where your preferences go, or research who is referencing whom to make sure you know what happens if your party doesn’t win.

Here’s hoping for a great future and ongoing support in the health arena.