Decisions, Decisions, Part II: Changing Doctors

If your doctor dresses in a Renaissance plague mask, it might be time to consider a change.

To most, changing your doctor might not seem like a significant decision. However, when you have an illness that is pretty much guaranteed to haunt you long-term, your specialist is one of the most important people in your life. You rely on them for the overarching framework of your day-to-day treatment, and for the major things – operations, significant medication – that will ultimately steer your health journey. With endometriosis in particular, you have to talk to them about some deeply personal stuff – everything from your family planning to the sensations in, well, personal areas. At some point, they will almost certainly ask to conduct a fairly invasive examination of said areas. You want this person to be someone you trust. You want them to listen to you, believe you, and help you.

But what if they don’t? What if your specialist, whom you have trusted with your pain and probably your resultant heartache, is dismissive, insensitive or rude? What if they simply have run out of ideas? When do you say, “enough is enough” and decide to switch?

These are some of the important questions to consider when making your decision.

1) Are there others in the area?

This is less of an issue for those in populous, well-resourced cities, where specialists abound. However, in smaller towns or remote areas, your next closest specialist could be anything from a few hours to over a day’s drive away. Can you commit to travelling that distance for appointments? If you can, by all means, crack on. If it is more challenging for you logistically, you will need to weigh the issues with your current specialist against the issues with physically getting to the new one.

If you can travel, it can be worth it. Good specialists often congregate where there is high demand for their skills. To see one of my specialists, I travelled three to four hours each way (including post-op). To see my current specialist in person, I travel to the UK (although I’ve only done that once and he kindly consults by Skype). Whilst travelling halfway around the world is admittedly extreme, for me it has been worth it, because I couldn’t be happier with Dr Edi-Osagie. Even the three-hour journey for my previous specialist was worth it at first, because the quality of care I was receiving was significantly better than I felt I was getting closer to home.

2) Can you afford it?

Some specialists are cheaper than others. Some have a huge up-front cost but a lower ongoing cost, whilst others have a reasonably low cost for their initial appointment but higher costs overall. Some insist on an initial scan, at additional cost. With others, you may have to factor in additional travel costs.

3) What is prompting the change? Can a new doctor do more?

I’ve changed specialists three times. The first time, I lost confidence in her ability to do anything to help me. The second time, I felt like he didn’t believe me when I described the severity of my pain. The third time, he seemed too fixated on the idea of pregnancy as a cure, even whilst acknowledging it was a temporary fix at best, and it was clear our ideas about acceptable quality of life were not the same. With each doctor, I left the appointments feeling hopeless and a bit worthless, like it was my fault that I had this pain.

When the problem is a values clash, as with my second and third doctors, I think that changing specialists (all else being equal) is a straightforward decision. Life with endometriosis varies from hard to downright horrific. Enduring it is difficult even with everyone on your side. It is borderline impossible when the person who is supposed to be treating you gaslights and undermines you instead.

It’s more complex if your specialist can’t help you reduce your pain. It might be that they have reached the upper limits of their own knowledge, and another specialist could have new ideas or greater expertise. Alternatively, it might be that your disease has simply reached a stage where conventional medical treatment simply cannot assist you. This is an important distinction and one you should have with your doctor. If they are honest and have integrity, they’ll be able to tell you whether someone else can help where they can’t. It might still be worth getting a second opinion, especially if your relationship with your specialist isn’t that good or you feel that they are offended by the question.

Likewise, it is important to check out your specialist’s qualifications. If they are a fertility specialist first and deal with an endometriosis as a consequence of that, you may be able to get more advanced treatment from someone who focuses entirely on endo. If your surgeon has only tried ablation, it could be that excision is what you need. However, if you are already seeing someone at the top of the game, it could be that you have just run into the barrier of awfulness that is severe endometriosis.

4) What else can you do?

This question can mean “are there alternatives?” or it can mean “are there things I can do as well as change doctor?”

Alternatives may be explaining to your doctor how they have made you feel, if you think they will be open to changing.  It may mean staying with your primary doctor but seeking a second opinion, just to be safe.

Additions may mean making a complaint about your doctor to AHPRA, making a complaint to their practice, or commencing legal action against them.  I do not recommend taking to facebook or anywhere else and complaining about them to the general public.  It is far too easy to find yourself smacked with a defamation case by doing that, and that is the last thing you need.

If you do intend to sue your doctor for personal injury (if they’ve caused an injury, that is) please be aware that there are very strict time limits on your ability to do so, so get yourself to a lawyer ASAP for advice on your prospects.

 

Have you had a bad experience with a doctor that made you change to someone else?  Were there any limiting factors on your decision?  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!).

 

The Magic of Music, Part 1

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

Guess where I’m going with this.

That’s right, an endo playlist!

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

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

1) Head Above Water, by Avril Lavigne

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

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

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

Listen when: you feel like no one understands

2) Heart Full of Scars, by Rebecca Black

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

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

 

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

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

3) Full of Grace, by Sarah McLachlan

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

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

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

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

4) Where My Heart Will Take Me, Russell Watson

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

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

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

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

Listen when: You need someone to believe in you

5) Healing Incantation, sung by Mandy Moore in Tangled

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

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

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

Favourite line: “Bring back what once was mine”

Listen when: You really, desperately want healing

 

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.

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.

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.

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.