August Gratitude

August has slipped away and we are finally into spring! Before I can celebrate the joyous arrival of that lovely season, though, I want to talk about what I was grateful for in the final month of winter.

I’m sorry it has taken me so long to do this.  I ended August on a bad note, with a solid two weeks of pain that eventually got so horrific I was forced to take a week off.  It’s always super depressing that happens, because you start questioning the effectiveness of your treatment and eventually spiral down into deciding that nothing will fix you and you are doomed to be eaten alive by your own uterus.  It’s hard to be grateful in those circumstances and it has made this list a little harder to complete.

Nevertheless, grateful I am and grateful I will continue to be.  Here’s what about.

1) Having a warm home

I used to volunteer in a men’s homeless shelter overnight in winter. You’d sleep on the ground in the church hall we were given for it, inside a sleeping bag. Even with my cosy sleeping bag, it was chilly. Of course, I only had to do that one or two nights a month. For the men that utilised the shelter, they had to sleep in those conditions or worse every night.

Burning Firewoods
Image description: a wood fire burning in a brick fireplace.  

Australia can get cold at night. Really cold. Dying of exposure is a possibility. Each winter I am grateful for four walls and a roof, a warm bed and fluffy pyjamas.  I am glad that my pets are also safe and warm around me.

2) Wonderful work friends

As I noted in July, our team grew again, and I’m delighted that our new additions are, like my existing colleagues, smart, capable, hard-working, kind, hilarious women that I can have a good laugh with even whilst we are working under heavy pressure to produce good stuff. With or without these ladies, my work would be interesting, but they make it delightful. People really do make a workplace.

3) New suit

It’s red. It’s fabulous. It was on sale. Enough said.

Image result for review australia aries jacket
Image description: a blonde white woman wears a black dress with flowers printed on it and a dark red blazer with a waterfall front.  This is the jacket from my new suit.  Image and jacket from Review Australia.  

4) Blue skies

You know those windless winter days where the air is still crisp and cold but the sun is beautifully warm and the sky is a perfect rich blue without a cloud in sight? Australia does those days well. I love them, and the end of August gave me plenty of them.

5) Gorgeous sunsets

The sunsets really started to get pretty in August. They’d be gold at the horizon, fading up through pink, into violet, through all the shades of blue. The city skyline and the hills around were silhouettes perfectly against it. It was all just super pretty.

6) Two straight weeks of work

Sure, I ended August with a horrific flare-up and the two weeks leading up to them involved a fair amount of pain, but I managed them at work and I achieved good stuff.

7) Age of Empires

Image result for age of empires
Image description: computer graphics showing some short wooden towers and walls on either side of a path.  There are trees and cliffs to their right.  Further to the right is a stone house and a stone tower, looking over the coast line.  In the very blue sea is a dock and three little ships.  The text across the picture reads, “Age of Empires II: HD Edition.”  

 

I got my first copy of AoE in a box of Nutrigrain. It was great. My sister and I soon acquired Age of Empires II: Age of Kings. We were thrilled when Age of Empires III came out. It’s fun, it’s pretty, you get to fight the French. I went on a bit of a binge during August and enjoyed not only the game, but the nostalgia too.  There are many different nations to play as and against, each with their own distinct characteristics and style.  Also exciting: apparently there is going to be an Age of Empires 4 released next year.

8) B12 spray

Image description: a white spray bottle with a blue label that reads: B12 Liquid.  

I take a LOT of vitamins. Between the IBS and the endo and the various deficiencies, I have to swallow a lot of tablets. Not only is a sublingual spray a more efficient way of absorbing B12 (particularly important for vegans), it’s relatively tasty and it is one less pill to have to force down your throat.  It’s actually a big relief for me to find a way to take this important supplement without having to fight nausea to do it.  I use this bad boy: https://www.discountepharmacy.com.au/bioceuticals-b12-spray/

9) Tofu

Maybe it sounds like a silly thing to be grateful for, but I really am.  It’s such a versatile and delicious food.  It’s really quick to cook and it doesn’t cause me digestive issues.  It’s very nutritious, with plenty of protein and surprising amount of iron for a such a pale, flabby-looking food (I always associate iron with dark colours like kale or spinach).  I particularly like it as a scramble (crumbled into a frying pan with oil and whatever herbs, spices and vegetables I fancy) or fried in a coating of salt, pepper and flour.  Yum.

10) My parents

Once again, my parents helped me out during my week of sickness.  My mum came out twice, brought me some groceries and did some of my laundry, and my dad came out once, drank my tea and then had to leave because he’s allergic to my cat.  Having help with the chores went you can’t stand is just the biggest weight off your mind – not only does a cleaner space make my mental health better, it relieves the pressure on me and on my husband, who of course otherwise has to pick up the slack when I’m sick.  Even just having company makes a big difference – being home sick is a lonely, isolating experience.  You feel a bit unloved and a bit useless.  Company helps relieve that.

 

What were you grateful for in August?  Anything amazing happen?  Did you have to struggle to find the silver lining in the clouds?  Let me know in the comments.

Patience Quotes

I AM NEARLY A MONTH BEHIND IN POSTING THIS.  I do apologise.  Chronic illness and all.

For the month of July I decided to focus on quotes about patience.  It’s a quality you need in abundance when you’re chronically ill, because nothing moves quickly.  Getting specialist appointments, getting surgery, your medication taking effect…everything happens at a glacial pace, and it feels like doctors’ favourite phrase is “let’s just wait for six months and see how it goes.”

I’ve decided to continue providing links to the authors of these quotes.  I want to make it clear that where I have quoted someone, it is not because I necessarily agree with their entire life philosophy.  I just like that quote.  I may not even agree with the quote itself in its entirety.  For example, Joyce Meyer, author of the second quote, has previously preached the Prosperity Gospel (e.g. the belief that you get what you deserve in this life, and that poverty, sickness and other bad things are a result of a lack of faith).  She has since said that she has realised that is wrong.  Likewise, I don’t entirely agree with Aristotle’s quote – the results of patience are sometimes disappointing.

On a different note, how great is today’s stock image of a pineapple waiting?  I’m not sure what it’s waiting for, but I bet it’s being patience as heck.

With all that said, here are some quotes about patience:

  1. “Adopt the post of nature: her secret is patience.” – Ralph Waldo Emerson
  2. “Patience is not simply the ability to wait – it’s how we behave while we’re waiting.” – Joyce Meyer
  3. “Patience is bitter, but its fruit is sweet.” – Aristotle (or possibly Jean-Jacques Rousseau)
  4. “Two things define you: your patience when you have nothing and your attitude when you have everything.” – Anonymous
  5. “The secret of patience is to do something else in the meantime.” – Croft M Pentz
  6. “Patience has its limits. Take it too far, and it’s cowardice.” – George Jackson
  7. “Patience is the companion of wisdom.” – Saint Augustine
  8. “Have patience will all things, but first of all with yourself.” – Saint Francis de Sales
  9. “It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.” – Julius Caesar
  10. “Good character is not formed in a week or a month.  It is created little by little, day by day.  Protracted and patient effort is needed to develop good character.” – Heraclitus
  11. “I am patient with stupidity but not with those who are proud of it.” – Dame Edith Sitwell
  12. “Faith is not simply a patience that passively suffers until the storm is past.  Rather, it is a spirit that bears things – with resignations, yes, but above all, with blazing, serene hope.” – Corazon Aquino
  13. “Fortune knocks but once, but misfortune has far more patience.” – Laurence J Peter
  14. “Abused patience turns to fury.” – Thomas Fuller
  15. “How poor are they that have not patience!  What wound did ever heal but by degrees?” – William Shakespeare
  16.  “Everyone ought to bear patiently the results of his own conduct.” – Phaedrus
  17. “Hopelessness has surprised me with patience.” – Margaret J Wheatley
  18. “Teach us, O Lord, the disciplines of patience, for to wait is often harder than to work.” – Peter Marshall
  19. “What we all need to do is find the wellspring that keeps us going, that gives us the strength and patience to keep up this struggle for a long time.” – Winona LaDuke
  20. “All men commend patience, although few are willing to practice it.” – Thomas von Kempen
  21. “A healthy male adult bore consumes each year one and a half times his own weight in other people’s patience.” – John Updike
  22. “Most men pursue pleasure with such breathless haste that they hurry past it.” – Søren Kierkegaard
  23. “Patience is not passive, on the contrary, it is concentrated strength.” – Bruce Lee
  24. “We could never learn to be brave and patient, if there were only joy in the world.” – Helen Keller
  25. “I am extraordinarily patient, provided I get my own way in the end.” – Margaret Thatcher 
  26.  “Nothing else is necessary but these – love, sincerity, and patience.” – Swami Vivekananda
  27. “Patience isn’t a virtue; it’s a necessity.” – Lou Holtz
  28. “Almost everything is outside of your control. You may take all the right actions and fail. You may take no action and win. All you can do is put yourself is positions to win. Be consistent. Patience will eventually get luck on your side.” – Crypto Seneca
  29. “All good things arrive unto them that wait – and don’t die in the meantime.” – Mark Twain
  30. “The more you ask how much longer it will take, the longer the journey seems.” – Maori saying
  31. “What may not be altered is made lighter by patience.” – Horace

How do you help cultivate patience in your own life?  What tests your patience most of all?  Let me know in the comments.

 

 

Decisions, Decisions, Part I: Employment

As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week?  If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do?  Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)?  Are you eligible for government housing or rental assistance? Are there any costs you can cut down on?  These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer.  Ask what funding options there are and what you need to do to qualify for them.  Get as much medical evidence as you can from your treating team.  I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to?  Is your prospective employer likely to be flexible?  Will the new job suit your needs?  Will you enjoy it?  Seriously, mental health is important.  You want to like your job, especially if you are spending a lot of time doing it.  Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

 

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind.  It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this?  How did you decide in the end, and do you feel like it was the right call?  Let me know in the comments.

One Giant Leap for Mankind: 50 Years On

As anyone who has been paying attention to the news will know, this year – one week ago today, in fact – is the 50th anniversary of humankind first landing on the moon.  I didn’t write about it a week ago because I was at the coast, pretending to be a mermaid and not writing anything, so I’m writing about it now.

I’ve been fascinated by space for a very long time.  I’m a huge fan of Star Wars, Star Trek and Doctor Who.  I’m currently rediscovering a love of H G Wells.  I love Glynn Stewart’s many space adventure novels.  I think Firefly was a work of art (let’s not talk about Serenity).  One reason I really, really love it – particularly Star Trek – is because it is one scenario I can imagine myself in where endo might conceivably not be an issue.

Think about it.  All the books, movies, tv shows and games set in the past, present or near future might be fun to imagine yourself in.  I love to think how I’d survive if I were suddenly whisked back to Jacobite Scotland a la Outlander, or whether I’d make it through more days than my character on his desert island on Stranded Deep.  I used to think I might have a fighting chance in a zombie apocalypse (or, at least, I might not die in the first wave).  Now, however, my imagining is usually interrupted with the thought that I would be useless and probably die as soon as my meds run out.  First my Prostap would go and my flare-ups would return, and then my implanon, and finally my mirena, and my periods would come back and I’d either get eaten by a shark or offed by the girzzled band of zombie fighters for slowing them down.

But in Star Trek?  I’m sure there’s a hypospray that will keep my hormones in line, even if a cure for endo hasn’t been definitively found in the 24th century (which I suspect it will have been).  Even if I still had to suffer flare-ups, my replicator could be programmed to provide all kinds of delicious, low-FODMAP vegan meals without me having to stand and do any prep, and my (absurdly spacious) quarters would be at the exact right temperature.  My uniform could doubtless accommodate a built-in heatpack (to be clear, I’m talking about Next Gen on here, not TOS with its classic mini-dresses).  It’s very easy to imagine myself in that world without thinking “Oh, hey, I’d really struggle and would end up dying a horrible death.”

Returning briefly to the realm of reality, it does make me a bit sad that I will never, ever be one of those lucky, talented people that blasts out of the confines of our atmosphere and explores space.  I wish I had some kind of mad physics- or maths-loving brain that would make me a useful cosmonaut, or even one of the incredible ultra-nerds of NASA.  What a privilege to be able to work on the space programme!  How fantastic it must have been to be a part of that!  Still, I’m really grateful that those ultra-nerds did what they did (and continue to do).  To me, they are representative of the most positive aspects of human curiosity, intelligence and the sense of adventure – boldly going where no one has gone before, and inspiring awesome tv shows in the meantime.

Now we just need to make endo-research as cool as space travel and entice lots of clever and/or wealthy people into doing and/or supporting it.  And then maybe we can have the first person with endo in space (although we might want NASA to find a safe way to deal with menstrual waste first!).

 

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?

 

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.

More Quotable Quotes

A while ago I did a post on 10 quotes that really summed up some of the experiences we have with endometriosis/chronic illness.  Recently, a lot of similar quotes have been popping up in my Pinterest feed, so I thought this might be a good time to do another one of those posts.

1)  “When I finally find a pain-free position…but then I have to pee.”  

All the damn time!

The quote is superimposed on an image of James Van Der Beek ugly-crying.

This one doesn’t really need an explanation, but boy, is it true (and frustrating).

2)  “Fake it til you make it doesn’t work with chronic illness”

MS, Fibro, Lupus, and the list goes on and on.... Chronic Debilitating Painful Illnesses

Image is a tumblr post by thatchronicfeeling.  It reads:

“‘Fake it till you make it’ dosen’t work with chronic illness.

Instead, the options are:

‘Fake it till you are so ill you can’t get out of bed’

‘Fake it till you have a flare’

‘Fake it till you have a flare, continue to fake it till you’re hospitalised’

OR

‘Accept that you have one or more chronic illnesses, adapt accordingly and look after yourself.'”  

I suspect most of us are guilty of trying to fake it til we make it far too many times, largely because there are enormous societal and economic pressures to do so, even though we know it doesn’t work and isn’t conducive to long-term health.

3) The Most Annoying Thing

Indeed, I still try though. Now and then, PIZZA!!!

Image reads: “The thing that kills me about chronic illness is that you can do everything right and still be sick.  You can be on the best medications, eat the best food, exercise seven days a week, sleep eight hours every night, and still be sick.  You can follow every rule, do everything your [sic] supposed to, and still be sick.”

You’re telling me.  I flew halfway around the planet to get the best surgery currently available only to discover I have another underlying condition that the surgery can’t treat.  I sleep ten or twelve hours some days and I’m still fatigued beyond enduring.

On the other hand, I did go to my Bangladeshi friend’s house the other night and eat all the high-FODMAP food, but honestly, if you could taste her mum’s dahl, you’d eat it if it killed you.

4) Of Mice and Men

Quote, 'Of Mice and Men'

Image is a quote from Of Mice and Men: “It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do.”

This really hits home.  As I write I’m supposed to be at beautiful Pearl Beach catching up with a dear friend whom I don’t see nearly enough.  Instead, I’m at home in my pjs because I couldn’t handle the journey.

5) I want to be enough

Chronically ill person

Image reads: As a chronically ill person, I don’t want to be told I can do anything if I put my mind to it.  I want to know that what I can do is enough.”

Absolutely.  It doesn’t matter how determined I am to be a prima ballerina when I can barely make it to the gym twice a week through fatigue and pain.  Rather than being told “you can do anything!”, which kind of rubs it in our faces that we can’t, tell us that we are doing really well as we are (because we are).  

6) Surprise!

Funny because it’s true

Meme of a cat face on a background partitioned into six shades of blue.  Texts reads:

“Me: so what are we going to do with my life?

Body: It’s a surprise!”

It sure it, body.  It sure is.

7)  Waste of spoons

Said every person who is chronically ill.

Image reads: Why waste spoons on shaving your legs?

I’ve had many a day in between laser sessions where I have thrown out my skirt or dress plans in favour of trousers because shaving requires far, far too many spoons.

If you can’t bear the sensation of leg hair want to know more about removal options, have a squiz at this post where I evaluate the pros and cons of a few different choices.

8) Competing Desires

yes

Image reads: I am a person who wants to do a lot of things trapped in a body of a person who wants to sleep a lot.

Never a truer word was said.

9) A Fully Functioning Body

Image result for funny chronic illness memes

Image is a tumblr post by thefairiegirl.  It is a picture of a shocked lego-person in glasses with the text:

“When I see someone with a fully functioning body:”

and the lego person says, “I’ve always wanted one of those.”

Wouldn’t it be nice?

10) Fatigue

"You don't know what fatigue is until you've had to rest after taking a shower." Life with chronic illness. Fibromyalgia, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Lyme Disease.

Image is from someecards.  A vintage image of a lady in a bathtub on a blue background, with text that reads: “You don’t know what fatigue is until you’ve had to rest after taking a shower.”

I mostly take baths now for that exact reason, and I still have to rest afterwards.

What quote resonates with you the most?

If you enjoyed this post and want to see more of these quotes, follow me at https://www.pinterest.com.au/bubblesinthebrain/ and look for my Endometriosis board.

Happy Christmas!

Whatever my dear readers are celebrating at this time of year, I wish you all the happiest of days with no pain or stress.

For my fellow Christians, this may not be the exact anniversary of Jesus’ birth, but remembering that awesome event is of such importance. His birth is a symbol of hope, and hope is one thing us sickies will always need.

Merry Christmas to all! 🎄