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.

Consistency

My theme for April is consistency.  Ironically, I really, really struggled with consistency throughout the whole month.  Pain, illness and depression really kicked my bottom and I didn’t even write my quotes on a daily basis and had to do a big catch-up at the end of the month.

I think that just goes to show how hard consistency is for the chronically ill.  Consistency is so important in developing habits, building fitness, creating a reputation as a reliable person, even constantly practising self-care – all things that are just that much harder when you have an unpredictable and uncontrollable illness.  However, consistently trying is still important.  And there are other things we can practice consistently – kindness, courtesy, positivity, etc.  It’s really important to remember that our consistent things don’t have to be big – small things done consistently are more important than doing occasional big things in terms of building good habits and good health (insofar as is possible).

As always, I may not agree with every single aspect of these quotes, but by and large I think they have important things to say.

My apologies for the amount of unattributed quotes.  Not a lot of people have cool things to say about consistency, apparently.

If you are wondering about the post image, that was what came up when I typed “keep trying” into a stock image generator, so that’s what we’ve got.

  1. “We become what we want to be by consistently being what we want to become each day.”  – Richard G Scott
  2. “Consistent action creates consistent results.” – Christine Kane
  3. “We all have to start somewhere, and doing something is better than doing nothing at all.  Start small so you don’t get discouraged and give up.  Remember it is all about consistency.”  – Khloe Kardashian
  4. “Relationships feed on credibility, honesty and consistency.” – Scott Borchetta
  5. “True consistency, that of the prudent and wise, is to act in conformity with circumstances and not to act always in the same way under a change of circumstances.” – John C Colhoun
  6. “When you’re so consistent, people have to stand up and take notice.  I don’t think people recognise or praise consistency enough.” – Katie Taylor
  7. “For me, integrity is the consistency of words and actions.” – Kenneth Chenault
  8. “I pray to be like the ocean, with soft currents, maybe waves at times.  More and more, I want the consistency rather than the highs and lows.” – Drew Barrymore
  9. “Like anything worth doing in life, happiness takes time and patience and consistency.” – Mark Manson
  10. “I think what children need is love, security, stability, consistency, and kindness.” – Rosie O’Donnell
  11. “A jug fills drop by drop.” – Buddha
  12. “”Quality is appreciated.  Consistency is honoured.  Consistency in quality is loved.” – Amal Gade
  13. “Trust is built with consistency.” – Lincoln Chafee
  14. “Long-term consistency trumps short-term intensity.” – Bruce Lee
  15. “Small disciplines repeated with consistency every day lead to great achievements gained slowly over time.” – John Maxwell
  16. “Motivation is what gets you started.  Habit is what keeps you going.” – Unknown
  17. “Extremes are easy.  Strive for balance.” – Colin Wright
  18. “You will never change your life until you change something you do daily.  The secret of your success is found in your daily routine.” – John C Maxwell
  19. “Consistency is harder when no one is clapping for you.  You must clap for yourself during those times.  You should always be your biggest fan.”  – Unknown
  20. “I didn’t come this far to only come this far.” – Mick Kremling (possibly)
  21. “Don’t stop until you’re proud.” – Unknown
  22. “Always be persistent in your pursuits.  Consistency shows value in whatever you’re after.” – overlyxclusive
  23. “By being consistent with your efforts, you will find that things will start to change in what will appear to be subtle ways because we are less likely to take notice of things when they no longer challenge us.” – Jenny Stanley-Matthews
  24. “Your intuitive sense of what feels right or doesn’t feel right will remain consistent for a longer period of time and will far outlast the consistency of your emotional feelings.” – Sidney C Walker
  25. “don’t expect immediate recognition after you have made positive changes.  There has to be consistency in your behaviour and performance over time.  Don’t think that by reading a book and changing some of your behaviours that tomorrow will bring you recognition or a promotion.” – Catherine Pulsifer
  26. “The body loves routine.  Try to eat, sleep, and so on at the same times every day in order for the body to function at its optimum efficiency.  The body loves consistency.” – Theresa Hearn Haynes
  27. “Strive for progress, not perfection.” – Unknown
  28. “If you do what you’ve always done, you’ll get what you’ve always gotten.” – Anthony Robbins
  29. “Compromise, communication and consistency are needed in all relationships, not just romantic ones.” – Alex Elle
  30. “If you are persistent, you will get it.  If you are consistent, you will keep it.” – Unknown

So, that’s another month of quotes for you.  May is going to be all about persistence, which sounds like the same thing but isn’t.  Hope you’ll stick around to read all about it.

April Gratitude

Another month has passed astonishingly fast, and it’s that time again – a monthly gratitude post.

Not going to lie, April has been super hard, and so finding things to be grateful about has been trickier than usual.  I haven’t really had any spectacular lows, but it’s felt like I’ve been in a constant slump.  I’ve had a number of sick days, and had a really bad experience with my last Prostap injection (a painful infection at the injection site and ongoing struggles with the side-effects).  The ongoing pressure of the adenomyosis and the general malaise and lack of hope that comes with chronic pain has been exceptionally hard to deal with.

However, I made a commitment to be more grateful and positive this year, and these posts force me to consider the good things in my life, so let’s go.

1)  Easter

Close-up Photo of Bunny Plush Toy
Image description: a grey felted rabbit holding a pink felted egg with white spots.  It is standing on a next on a wooden board and there are some white flowers next to it.  

I wrote about what Easter means to me as a chronically ill Christian, so I hope I’m not cheating by mentioning it again.  There are plenty of reasons to be grateful for it, though.  A four-day weekend (followed shortly by ANZAC Day), lots of chocolate, and, of course, the celebration of Jesus’ sacrifice that means an afterlife in paradise.  That’s always good.

2)  Girl’s night

I got a chance to spend the evening with my four best girls.  We are a diverse group in both personalities and backgrounds, but we still have plenty in common – enough that we have stayed friends for ten years during the most turbulent times of our lives.  Perhaps our greatest commonality is our love of great food, which we ate at tonne of.  One of this fabulous group is from Bangladesh, and boy, does her mum create the most amazing feasts ever.  I could LIVE off her dahl.  Her spinach is mind-blowingly good.  She is single-handedly responsible for making me like cauliflower.

Sure, it was incredibly high FODMAP and I was in agony the next day, and I accidentally ate a chilli, but it was entirely worth it.  And now I’m craving her spinach.  Damn it.

Also, the chance to see my four wonderful best friends is always so good.  Everyone should have that friend or group of friends that they love and trust and always feel incredibly happy to see, even when life is hard or you don’t want to socialise.  This is that group.  There is no feeling in the world like spending time with my girls.

3)  ANZAC Day

Red Petaled Flower in Macro Photography
Image Description: a red poppy on a field of grey grass.

I may be pretty anti-violence, but I am not against people standing up to invaders.  I can also appreciate the courage, heroism and comradeship displayed by the ANZACS and the other soldiers of WW1.  Can you imagine how terrifying it would be to suddenly see a tank coming over the horizon in a war where cavalry with swords were still in common usage?  Can you imagine the mud, the blood, the terror, the cold in winter and the searing heat in summer, the disease, the privation and the utter uncertainty?  I don’t think war is something to celebrate, but the qualities of the soldiers who fought are, and their deaths should be remembered and commemorated.  I am grateful for what they did to ensure that we won the war.

4) An income

In the last month I’ve seen a lot of articles and the like on the difficulties of people with chronic illnesses who also have to deal with a low income or poverty.  This one in particular tugged at my heartstrings.  Australia has a good social security system compared to some countries, but as a lawyer I heard a lot of stories about people struggling with bureaucracy and a lack of understanding of the nuances of their condition.  I am incredibly grateful that I don’t have to battle for Centrelink, or try and live on the amount dispensed.  A stable income, having enough left in your pay after the necessities to save or give to charity – these are privileges that cannot be underestimated.

5)  Changing leaves

Landscape Photography of Trees
Image description: a tree with golden and green leaves shades a green field to the left and a brown path to the right.  The path has red and gold trees on the right that form a sort of tunnel.  Glimpses of bright blue sky are visible at the top of the image.  

As I wrote last month, I love autumn.  I’m enjoying the cooler weather still, although I’m not thrilled with some of the very cold mornings.  What I am loving this month is the beautiful autumn colours as the leaves change from green to shades of gold and red.  Some of the older suburbs with the European trees are just incredibly beautiful in autumn.  It was a particularly big shock for me when I took a week off sick at work to go from driving down the street my office is on and seeing it go from a green tunnel to suddenly almost bare, with the road covered in golden drifts of leaves.  I also really love the smell of autumn leaves as they break down.  It’s so earthy and rich.

6) Fitness 

During April I took advantage of a Fernwood sale and bought myself a membership with some personal training.  My PT, Emily, is really fun and works me within my limits, but doesn’t let me slack off.  I’m really exciting to be getting my fitness back on track, and have been taking on some additional exercise as well (I swam a kilometre for fun the other day!).  I’m doing almost an hour of warm-up before my sessions, and it is really, really relaxing for the brain.  I can just focus on my body and making it work.  It’s great mindfulness.

I also really enjoy feeling exhausted and sore for a good reason, as opposed to just feeling exhausted and sore because disease.  It’s satisfying and makes me feel proud of my achievements.  I’m not losing any obvious weight (thanks menopause!) but I am feeling my muscles harden up and I have a little bitty line on my biceps that looks like it could be a muscle.

7) Vegan smoked salmon

Since going vegan, people often ask me if I miss meat.   Generally speaking, no.  Sure, I enjoyed bacon and rissoles, but I never really got excited about steaks or chicken.  I genuinely do enjoy the taste and texture of fake meats better in 99% of cases.  However, I loved fish.  I definitely didn’t give up eating fish because I hated the taste.  Gardein Fishless Fillets filled a big gap for me, but I really, really missed smoked salmon.  Thankfully, the Cruelty Free Shop has started carrying Sophie’s Kitchen Vegan Smoked Salmon.  It’s not a perfect replica but it is very close and soooo tasty.  I had so many slices of toast with Tofutti cream cheese and some chives.  Heaven.  Happy little vegan.

8) Macaron adventures

Three Assorted Flavor Breads
Image description: three macarons in a pile.  The bottom is cream, the middle is pink and the top is brown.  

Disclaimer: the macarons in the picture above are not mine.  Mine only vaguely resembled macarons.

Image may contain: food
Image description: macarons with the insides exploded out.
Image may contain: food
Image description: a slightly less exploded macaron.  

 

Pictured above: attempts one and two.  They tasted fine.  I’ve never tasted macarons before, vegan or otherwise, so I have no point of reference, but these were nice, with a light marzipan flavour.  I definitely need to have another crack and try and get them better, but I think eventually I’ll get it.

I baked them with my sister and it was a bit of a giggle.  It took us HOURS and she managed to turn our sugar syrup into a solid rock, but I enjoyed it, even if it was incredibly frustrating to put in all that work and just get explosions.

This is the recipe I used.  On my second batch I turned the oven down to 250F and it worked much better.  I’ll keep playing and let you know if I ever manage it.

9) Love Nikki

Image result for love nikki
Image description: a pink-haired anime girl with flowers.  She has pale skin and brown eyes and is smiling.  She is the titular character in the game Love Nikki,  

If you play mobile games with pop-up ads you have probably seen some for Love Nikki.  It’s basically like Pokemon but for fashion.  Your character, Nikki, is inexplicably transported to another world with her cat, Momo, and ends up in a bunch of styling contests.  The game has a bunch of content and paying players definitely have a big advantage, but even my cheap self who just plays the free version can get heaps out of it.

It may seem like a silly thing to be grateful for, but it’s another thing I can do for fun when I’m really sick and stuck in bed.  Apps are great for the chronically ill.  Plus, I really like anime and pretty clothes, so this ticks all the boxes.  Let me know in the comments if you’d like a more in-depth review.

10) Sex Education

Image result for sex education

I don’t mean the school lessons – mine were patchy and weird at best.  Highlights included being told repeatedly to just “keep your pants on!” in a strong US accent, and pictures of diseased genitalia.  That’s a Christian school vs a public school for you, I suppose.  Both freakish and not particular useful, just in very different ways.

What I am actually referring to is the Netflix show, Sex Education, starring Asa Butterfield (you may recognise him as the titular character of Ender’s Game).  Whilst this show does have more sex scenes than I really want to see (probably unsurprising, given the name), it also deals really, really well with some very real issues – poverty, abandonment, over-protective parents, divorce, sexual trauma, abortion, vaginismus, slut-shaming, parental pressure, revenge porn, stigma against virginity, stalking, drugs, homosexuality (both repressed and flambouyant) and the attendant prejudice and danger, and a raft of others.  The characters are engaging – some are deeply loveable, some are deeply tragic, and it is just incredibly well-written.  If you don’t mind a whole bunch of nudity and want a show that really tugs the heart-strings, this is a good one for you.  I was hooked.  I am not kidding when I say I laughed, I cried, and I determined to teach my hypothetical future children strong lessons about their self-worth and ensure that they get proper sex education.

Save These For Future Use, Part 1

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness.  Visitors to my Pinterest board, however, will also see more than just funnies and sads.  I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself.  I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something.  Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is.  Just skip the descriptions if you don’t need them.

1)  A pain scale we can all understand

Chronic Pain Scale

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain.  I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about.  I can barely talk or move because of the pain.

8 – Intense.  My pain is so severe that it is hard to think of anything else.  Talking and listening are difficult.

7 – Unmanageable.  I am in pain all the time.  It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time.  I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time.  I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain.  I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?”  My 10 is not the same as another person’s 10.  It doesn’t convey the actual effect of the pain on my body.  It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale.  And is the scale linear or logarithmic?  HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own.  You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating.  Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5.  My face doesn’t crack, my posture doesn’t slump.  I carry that through to hospital, where I am quiet and calm externally even though I can barely think.  I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me.  I can fall asleep despite really bad pain, because pain is very exhausting.  I know that it consequently reads as me exaggerating when I say that my pain is an 8.  Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work 

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence.  Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.  

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person.  On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering.  Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it).  If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries.  Basic household stuff.  If I want to have a shower or bath, I’m definitely not walking the dog.  The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards.  I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky.  I have more “useable hours” than many people.  However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed.  It baffles me that other people use their after work hours for more than resting and watching Star Trek.  Health and vigour seem like wonderful things.  I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day.  Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture.  The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it.  I was walking a specific path that got 130% re-routed when I got sick.  And it feels like I’m in this bizarre, alternate, half baked version of my real life.  And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led.  Who would I have been?  What could I have been?  We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad.  You are in mourning for the person you could have been, or thought you were going to be.  I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong.  It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year.  Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy.  Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take.  Would I be making a name for myself as a good advocate?  Would children still be a distant one-day?  Would I have been able to travel the world like my husband and I wanted?

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community.  It’s a place some of us get stuck in – the in between.  A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world.  You almost faint but you don’t.  You’re always in pain it’s relatively tolerable.  You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time.  Your heart rate is too high to be normal but not high enough to be critical.  Your BP is low but not THAT low.  You try to find answers but seem relatively okay to doctors so they don’t want to run more tests.  You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”  

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything.  This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with.  This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.  

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this?  I think this little post does it pretty well.  I don’t think people get that it is sooo much more than just pain.  I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function.  Fatigue is the biggest one.  I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late.  I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being.  I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed.  Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas.  I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it.  In the meantime, I think this little tumblr post does a very good job.

 

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.