Coronavirus

Hi all,

I want to apologise for the delay in posting. I had a post mostly ready to go, but with coronavirus doing what it’s doing, it didn’t feel right to proceed with my planned schedule without addressing the pandemic first.

This is not a fun time. It feels like half the world is taking this whole thing too seriously, and hoarding loo roll as a result. It feels like the other half is not taking it seriously enough, and refusing to take sensible measures to flatten the curve.

I know I’m not likely to die if I get coronavirus. Despite having a shockingly poor immune system, I don’t have any lung issues. I can’t say the same for my grandmother with one lung, who lives in a nursing home, which are basically disease-boxes. Nor can I say the same for my asthmatic friends. I’m worried about my uncle, who is a doctor, and my aunt and cousin, who are nurses. I’m worried about my husband, whose work exposes him to people from so many different situations that it could come at him from anywhere. I’m worried about my teacher friends, surrounded by hundreds of children every day with no way to maintain distance.

I’m worried about my friends who earn their living as casual workers or performers as businesses reliant on large groups of people gathering in small spaces close, or reduce their workers’ hours. I’m worried about small businesses I have affection for and loyalty too having to close their doors.

I’m worried about separated couples having to navigate co-parenting and quarantine. I’m worried about victims who live with their abusers, trapped in homes with them. I’m worried about people with depression, anxiety, mental illness and chronic pain becoming even more socially isolated and afraid, and the toll this will take on their mental health.

I’m worried about hospitals being put under so much pressure that doctors are forced to chose who to save, or leave people in pain and distress as a half-measure because there isn’t enough to keep everyone pain-free or healed.

I just want everyone to take sensible measures. Act pre-emptively in areas where coronavirus is not yet widespread, and take all possible precautions in areas where it is. Don’t hoard. Help your neighbours out, particularly if they are elderly, sick, disabled or isolated. Help those struggling financially if you have a little extra cash. Keep supporting local business where you can. Look after your mental health and maintain social networks as far as possible. Don’t panic. Verify your sources of information and take proper advice. Wash your hands. Understand that you being healthy doesn’t mean you aren’t a vector. Understand that health is not the same as immunity. Know the symptoms, and get tested appropriately. Just be good people, and good members of the human community.

I hope all my readers are staying safe and looking after themselves. I know many of you will be vulnerable to this disease, and are probably scared and feeling hopeless as people continue to blow it off as ‘a bad flu’. I’m sorry if you get glib responses like that to your valid concerns. I hope you don’t catch the virus, and if you do, I hope your symptoms are mild and your recovery is swift.

I wish you all the best.

xxxx

The Sexiest Stretches You’ll Ever Do

So, that title is definitely sarcasm. The stretches I am about to link you to are anything but sexy. You will look like a pretzel, like a frog, like you’re in stirrups at the gynaecologist, but I can almost guarantee you won’t look sexy (although you do you, of course).

So why am I talking about unsexy stretches? Because they can really help when you’re having a flare-up of endometriosis, or even on a good day when you want to try and put off the next flare. They aren’t a painkiller, of course; they won’t get rid of the agony. However, if you can do them, they will help relax your body and stretch out the pelvis. This may relieve some of the cramping. Relaxing the body can also help you deal with the pain better – holding tension in the body makes pain feel worse. Trying not to tense up during a painful flare is SUPER hard, but these stretches can force you into it.

Worst case, they’ll make you break wind, which might be embarrassing but can also be a relief, given the common connection between endo and the bowels.

I admit this post is short and really isn’t my work – I want this to be a collation of resources for fellow sufferers who are looking for some good ways to ease a tense pelvis. Please feel free to drop some other poses, stretches or gentle movements that help you in the comments – these ones help me the most but other people may have found some alternative amazing ones.

As with all exercise, if this makes things worse for your endo, stop!

I now present to you the best stretches I have encountered for my pain:

EIGHT STRETCHES ROUTINE

Image description: a person doing child’s pose on a pink yoga mat. They are kneeling down, and have leaned forward so that there chest is close to the floor and their arms are stretched out in front of them.

These eight positions from the Pelvic Pain Foundation vary from, “yes, normal people do that stretch” to “please don’t do that in public, you weirdo.” However, they all help relax the pelvis and open the hips. Relaxed Goddess (the sixth one) is my favourite. It can be very painful to ease into but it provides the most relief for me. I also love Child’s Pose because it helps the pain I get in my lower back.

For an alternative routine, check out this collection of six stretches. There’s some overlap, but this routine uses a supported spinal twist and cobra.

PIGEON POSE

Image description: a pigeon

Pigeon pose is another hip opener. More open hips = a more relaxed pelvic floor. It also makes sitting down more comfortable, especially cross-legged. This handy guide gives you a warm-up on how to get there using a position from the eight-stretch routine above.

Image description: a person doing a variant of pigeon pose. Their right leg is folded in front of them, and their left leg is extended behind them. Their arms are stretched up to the sky.

CAT-COW

Image description: a cat stretching

Cat-cow is more for the back than the last pelvis. The gentle movements help stretch out cramped back muscles and elongate the torso front and back. This guide is a good read as it contains some modifications for people with neck injuries.

Image description: a person doing cat-cow pose. They are on all fours with their head lowered and their shoulders rounded upwards.

CORPSE POSE

Image description: a person lying on their back, arms above their head, in a grassy field.

I know this looks like just lying on your back like a ninny, but honestly, lying out flat and focusing on relaxing is as much of a challenge sometimes as twisting yourself into bizarre shapes – particularly when you’re in a lot of pain. This pose is worthless if you don’t work at it. Pair it with structured breathing and focus on each part of your body at a time, taking the time to notice and feel each part, and releasing the tension piece by piece. Unclenching the jaw, smoothing out the brow, lowering the shoulders, unlocking the joints. If lying flat hurts too much, try tucking a pillow under your knees or neck to create some natural, supported bends in the body. Lying flat on my back puts a lot of strain on my lower back, but putting a pillow under my knees or even lying on the floor with my lower legs up on a chair has the same effect without the strain.

I like to end a series of stretches with corpse pose, particularly if I do them before bed.

Try this guide for a detailed step-by-step and video.

The Magic of Music, Part 2

Back in 2019, I wrote a post on some songs I keep in my endometriosis playlist to listen to when I’m having a bad day. Today, I want to list 5 more.

I know there are way more amazing songs out there than I can possibly list here, so please go ahead and drop some more recommendations in the comments. What do you listen to when you are having a bad day? Do you have a favourite song about chronic illness?

1) Fight Song, by Rachel Platten

This song isn’t just about fighting; it’s about fighting when you don’t have anything left, when you don’t have any sleep or anyone left on your side.

Lyrics:

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosionAnd all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in meLosing friends and I’m chasing sleep
Everybody’s worried about me
In too deep
Say I’m in too deep (in too deep)
And it’s been two years I miss my home
But there’s a fire burning in my bones
Still believe
Yeah, I still believeAnd all those things I didn’t say
Wrecking balls inside my brain
I will scream them loud tonight
Can you hear my voice this time?This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in meA lot of fight left in meLike a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosionThis is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong (I’ll be strong)
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me

Know I’ve still got a lot of fight left in me

Favourite line: I might only have one match, but I can make an explosion.

Listen when: You need the inspiration to go just one step further

2) I Can’t Feel, by Yours Truly

‘I Can’t Feel’ was written by a fellow spoonie, singer Mikaila Delgado, who has Ehlers-Danlos Syndrome (EDS). EDS is a connective tissue disorder that causes hyper-mobility and tissue fragility. Just like those with endo, people with EDS often suffer pain with no obvious cause. Delgado shares her frustration, exhaustion, and loneliness in a world where pain wears us down, people don’t believe us and we so often go without answers.

Lyrics:

I don’t know if I’m feeling right
Like this is something that’s in my mind now
There’s no signs, there’s no symptoms here
I’m aching in my bones, it’s getting out of handBut I’m not afraid of this
If only I could put this mind to rest
My days blend into one another see
Give me a moment to step back and breatheI always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
I wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plans and II don’t know if I’m feeling right
They tried to tell me it was in my mind and I’ve
Been sleeping for days on end
Getting told to get out of my bed and move forwardI can’t explain the pain
I’m fucking over itI feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
I wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plans and II can’t feel
Anything else
But my heartbeat soaring
I always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Yeah, I’ve had enoughI’m not afraid
If only I could put this mind to restI always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Wish that I could sleep at night
Close my eyes and feel alright
But my conscience, it has other plansAnd I can’t feel
Anything else
But my heartbeat soaring
I always feel like giving up
Feeling tired out of luck
Let me tell you that I’ve had enough
Yeah, I’ve had enoughI’m sick of waiting for a change
That will never come my way
When I tell you that I’ve had enough
Yeah, I’ve had enough

Favourite line: They tried to tell me it was in my mind and I’ve been sleeping for days on end, getting told to get out of my bed and move forward

Listen when: you need to feel like someone else gets it.

3) Get Better, by Leslie Mosier

Leslie Mosier actually has endometriosis, so she definitely understands how it feels. ‘Get Better’ really encapsulates the struggle. The video also includes a lot of things we would be familiar with – TENS machines, endo belly, curling up in a little ball in bed. Of all the songs on this list, this one is definitely hits the closest to home.

Content warning: the video does contain needles, drugs and surgical procedures. It also contains a cute cat and a pug.

Lyrics:

Who was I before this?
Will I make it through?
The pain is slowly creeping
Till there’s nothing I can do

My body in a circle
Clouds fill up my eyes
I wait for it to kick in
So the hurt can be disguised

Breathing just feels harder
Down I go again

Wake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better, I feel like I’m a burden
A liability
But who am I to give a damn
When my own body turned on me

Keep pushing on to see better days
Even when it hurts
I’m not defined by the times I’ve cried
Or fallen to the dirt

Breathing just feels harder
Down I go againWake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better

Here I go, here I go, here I go again
I’m at war with my body, my closest friend
I’ve been broken, I’ve been down got up in the end
Here I go, here I go, here I go again

Wake up, put on the makeup
And smile for the camera
Work hard, make money
Maybe that will make me feel alright

No one really knows what you’re going through
But they pretend to say they’re thinking about you
I’m fine, I’ll be alright
I just wanna get better

Favourite line: Who was I before this?

Listen when: you want the endo experience captured in a single song

4) Have It All, by Jason Mraz

‘Have It All’ has nothing to do with chronic illness, but I’m including it nonetheless because it always helps me. I sing it in my head and dedicate to a different person each time whose life I want to be beautiful and lovely even when mine isn’t, whether it be my sister, my best friend, or all the people out that also suffering from chronic pain.It’s just so nice.

It also reminds me of the good things in my life – my friends and family, whom I deeply love – even when I’m in a lot of pain and can’t do much stuff. During those times they can still bring me fun and happiness.

Lyrics:

May you have auspiciousness and causes of success
May you have the confidence to always do your best
May you take no effort in your being generous
Sharing what you can, nothing more nothing less
May you know the meaning of the word happiness
May you always lead from the beating in your chest
May you be treated like an esteemed guest
May you get to rest, may you catch your breath

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow

Well here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh! I want you to have it all
I want you to have it
I want you to have it all

May you be as fascinating as a slap bracelet
May you keep the chaos and the clutter off your desk
May you have unquestionable health and less stress
Having no possessions though immeasurable wealth
May you get a gold star on your next test
May your educated guesses always be correct
And may you win prizes shining like diamonds
May you really own it each moment to the next

And may the best of your todays be the worst of your tomorrows
And may the road less paved be the road that you follow

Well here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh, I want you to have it all
I want you to have it
I want you to have it all

Oh, I want you to have it all
All you can imagine
All, no matter what your path is
If you believe it then anything can happen
Go, go, go raise your glasses
Go, go, go you can have it all
I toast you

Here’s to the hearts that you’re gonna break
Here’s to the lives that you’re gonna change
Here’s to the infinite possible ways to love you
I want you to have it
Here’s to the good times we’re gonna have
You don’t need money, you got a free pass
Here’s to the fact that I’ll be sad without you
I want you to have it all

Oh, I want you to have it all
I want you to have it
I want you to have it all

Here’s to the good times we’re gonna have
Here’s to you always making me laugh
Here’s to the fact that I’ll be sad without you
I want you to have it all

Favourite line: May you get to rest, may you catch your breath

Listen when: You really want to think about someone else instead of your pain.

5) Skyscraper, by Demi Lovato

‘Skyscraper’ is about a relationship rather than a chronic illness, but just imagine, if you will, that she is singing to your endo. It’s a song of defiance even in the pain and desolation.

Lyrics:

Skies are crying, I am watching
Catching teardrops in my hands
Only silence, as it’s ending
Like we never had a chance
Do you have to make me feel like
There’s nothing left of me?

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper, like a skyscraper

As the smoke clears, I awaken
And untangle you from me
Would it make you, feel better
To watch me while I bleed?
All my windows still are broken
But I’m standing on my feet

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper
Go on and try to tear me down
I will be rising from the ground
Like a skyscraper, like a skyscraper

Go run, run, run
I’m gonna stay right here,
Watch you disappear
Yeah-oh, go run, run, run
Yeah, it’s a long way down
But I am closer to the clouds up here

You can take everything I have
You can break everything I am
Like I’m made of glass
Like I’m made of paper, oh-oh
Go on and try to tear me down
I will be rising from the ground

Like a skyscraper, like a skyscraper
(Like a skyscraper)
Like a skyscraper, like a skyscraper

Favourite line: Do you have to make me feel like there’s nothing left of me?

Listen when: You need to feel a bit more defiant.

Disability and Disasters

By now, the world has heard of the horrific bushfires that have been ravaging Australia for the past few months. People have died, hundreds of homes have been destroyed, and our beautiful bushland has been absolutely devastated.

Living in a country with a climate as volatile as this one – if we aren’t on fire, we are probably flooding, in drought, or feeling the impacts of a cyclone – it is vital that Australians remain disaster aware and know what to do if we get early warning of a natural disaster heading through our area.

Today I want to talk about what additional steps those of us with a chronic illness or disability should take, and what we should have in our go-bags. I’m not going to recap the basics; disabled or not, everyone should be carrying water, first aid kits and food. Those of us with health issues unfortunately have extra things to worry about.

The sad truth is that people with disabilities are twice as likely to be impacted by a natural disaster as those without. In the 2011 Japanese tsunami, the mortality rate for disabled people was twice that of the non-disabled population. We are statistically less able to evacuate, or require assistance to do so, and often shelters and disaster management plans don’t take disability into account. Even once safely evacuated, we often require greater levels of health care and access to services and vital supplies such as medication. We are often not consulted by governments, local or large, when making these plans.

This is why I don’t like writing this article. For sure, disaster-preparedness is on the individual, insofar as the individual can be prepared. But disabled individuals can run into hurdles so quickly. It’s all very well to say “have a go-bag and a method of escape”, but what if you literally can’t? That’s why I want non-disabled people to read the questions below too, and think what you can do to help. If the disabled person asking themselves these questions below has to say no to everything, they may well die when disaster hits. You could be the person that steps in and changes on of the ‘no’ answers to a ‘yes’. You could be their way out of the disaster zone.

In the meantime, fellow disabled and sickly friends, these are the questions we need to consider.

1) Before it happens

Stay in the loop! Studies suggest people with disabilities are often the last to know when disaster is approaching. If you have a smart phone or internet access, sign up for notifications from your local emergency services. If you don’t, know your local emergency news channel and tune in, via radio or tv.

If you are not an electronics person, then forge relationships with people around you so that they think to alert you when trouble is coming.

2) How are you going to get away?

Not everyone with a disability is fortunate enough to be able to drive. Plenty of people who can drive can’t afford to buy or run a car. If you can’t drive or don’t have a vehicle, have you put thought into how you might evacuate in the case of a natural disaster? Do you have family, friends or neighbours whom you can rely on for transport out of there? If not, is there a support network for disabled or sick people that you can reach out to? If not, does your city or town provide any services you can utilise?

If you have limited options, you need to consider those options much earlier than able-bodied people, as it is much harder to leverage the people around you when they are also at the point of scrambling for an escape.

You also need to think about where to go. Often, public shelters are not set up to accommodate those with disability or serious illness. It is a failing of the governments providing these shelters and it sucks that we are disadvantaged by it, but if there are better alternatives out there, you may wish to consider utilising them if you can.

3) If you cannot leave, or do not want to, what is your plan?

Is your home defensible in the case of fire? If you are looking at an earthquake, flood or cyclone instead, do you have a safe place within your home you can shelter? Will you be able to fend for yourself when the power goes out? If you are physically disabled or suffer painful flare-ups and you have to climb stairs or move around obstacles to get to a safe spot, are you able to do so unassisted?

If you know you will struggle alone, do you have a friend, neighbour or carer who will be able to stay with you? If they cannot or will not stay, see if you can organise for them to check on you as soon as they are able to return to the area, or alert emergency services. See if you can get their help in getting to a safe place within your home, and ensuring you have what you need close to hand.

4) Ensure you have all your medical stuff ready

If you have to leave your area or your normal doctor is not available, it can be very hard to get the medications you need. I know of too many people with endo who have seen a new GP whilst their usual GP is on leave and been told that the new GP will not dispense their normal pain medications. If you become aware of a disaster approaching your area, consider asking your GP to give you your next batch of pain meds sooner (explaining why, of course!), or to provide you with a letter to show a new GP to encourage them to write a new script for you. Have crucial numbers – GP, specialists, family, carer and employer – written down, in case you have no internet access to look them up.

If you can, get your most important medical documents together – Medicare card, healthcare or pension card if you have one, private insurance documents if you have insurance, notes from recent procedures, etc. If you use an aid or device, whether it’s a wheelchair, hearing aid, colostomy bag, catheter, or alternative pain management  devices such as TENS machines or chargeable heat-packs, have them accessible. Make sure you also have spares, or necessary supplies like batteries or a charger.

If you have a service animal, ensure that you also have their medical stuff together, along with spare food (particularly if they need a special diet).

If you are evacuating with someone (the ideal), ensure that they are aware of your basic needs and know how to operate your equipment or help administer your medication.

5) Consider the extras

For those with endo or other diseases causing random, prolonged bleeding from the crotch, make sure you have plenty of pads or period-underpants. (You can get the Love Luna brand from Woolworths now.) If access to fresh water may be limited, look for wipes that are safe to use for the vulva so that you can keep yourself clean and help reduce the chance of infections such as thrush.

If you are prone to flare-ups, ensure that the clothes you are wearing and the clothes in your go-bag are soft, comfortable and won’t irritate sore pelvises, joints, or other pressure points. Go for quick and easy – maxi dresses, tracksuit or pjs bottoms, and t-shirts. Pack your softest, comfiest bra.

If you have a speech impairment or are deaf/hard of hearing and usually communicate through sign language, pack pen or paper – there’s a good chance evacuation may result in you being surrounded by people who have no AusLan skills and won’t be able to communicate with you properly.

If you are going to be staying, consider devices that can attract attention easily with minimal effort from you – bright torches (a good idea anyway for when power goes down) and a loud whistle or air-horn.

 

These are the five major things that I think we need to consider above and beyond the things an able-bodied person might. Some of them may not be issues for you; there may be many things I have no mentioned here that are vital considerations for you. You know yourself best and are in the best position to plan.

If you would like a more detailed resource, check out this guide by FEMA and the American Red Cross. It covers a lot of stuff and I found it a bit overwhelming, but it is much more comprehensive that what I’ve written here.

If anyone who has been evacuated or impacted by the Australian bushfires, or by any other natural disaster, would like to share their experiences and insight, please do so. This is such an important area of advocacy – lives are literally at stake – and the more information and tips we all have, the better.

2020: Hopes for the Future

Buckle in, friends. This is a long one!

I’ve written before about how the new year is always a time of hope for me – even though it is really just a Tuesday turning to a Wednesday, divided by the fairly arbitrary line of 31 December and 1 January, it always feels like a clean slate. I’ve also written about the importance of people with endo being realistic in their goal-setting. Today, I want to talk about my goals for 2020, and hear yours.

First, a brief note on my 2019 goals. I achieved two of them. They were to improve my Arabic, get my scuba qualification, and read the Old Testament of the Bible. Well, I succeeded in my scuba qualification (a few months later than planned) and will be getting my advanced qualification later this year. I managed the Old Testament with time to spare, and I’ll crack on with the New Testament in 2020. As for Arabic – turns out that is really hard to learn yourself, because trying to get any two courses, youtubers or Arabic-speaking friends to agree on the way to say something is impossible. There are too many dialects, and trying to find a consistent source for Modern Standard Arabic was a wild goose chase. However, I did start Mandarin lessons, and I can now tell you ‘Wo mao feichang shuai,’ (my cat is very handsome), although apparently you should only say ‘shuai’ about people, not cats, even though Max is a very handsome cat indeed.

IMG_0023.jpg
Image description: A ginger striped cat with green eyes is lying on his side on a concrete floor, looking just below the camera. There is a garage roller door behind him.

Ultimately, I think I took the lessons from my own post to heart, and the Arabic failure was because I lacked resources (which I should have researched more) rather than because my goal-setting process was flawed.

This year, my goals are a little different. I still want to finish off the Bible by reading the New Testament, which is fairly easy to plan out and achieve; it just requires a bit of commitment. My other two are more projects than goals.

Project 20 in 2020

My first project is very involved. Have you heard of the ’20 in 2020′ craze that’s sweeping the bullet-journalling community? Basically, you set 20 goals to complete in the year 2020 – bonus points if they somehow incorporate the number 20 (e.g. 20 days with no social media, 20 days of walking 20k steps or more, etc). Now, trying to do 20 sets of 20 things isn’t realistic for me, so some (most) of my goals are per month instead. I’ll be trying the following:

  1. Publish 20 posts on this blog!
  2. Reading 12 types of books I don’t normally read (e.g. I’m a fantasy/sci-fi girl, and rarely read autobiographies);
  3. Reading 20 books by women (my first list was a little male-heavy; this list is also diverse in terms of ethnicity and genre);
  4. Watching 12 movies I don’t normally watch (I’ve committed myself to such cinematic horrors as a gangster film and a sports film – two genres I would never normally touch);
  5. Listen to 20 new artists (I felt like 20 works for this category as it is pretty easy to listen to music – please leave some recommendations in the comments!);
  6. Go on 12 walks around the local region;
  7. Go on 12 adventures (a coast trip, more scuba, a day at a museum, laser tag – anything fun and different);
  8. Go on 12 dates with my husband;
  9. Run 20km per month (or swim 4km, if running isn’t possible);
  10. Go to the gym twice a week;
  11. Save 20% of my income;
  12. Write monthly emails or letters to my grandparents;
  13. Write monthly notes to my sponsor child;
  14. Bake 12 new things;
  15. Cook 12 new meals;
  16. Complete 12 art projects;
  17. Do 12 pieces of calligraphy;
  18. Complete 12 pages in my beautiful Citrus Book Bindery journal that my wonderful parents bought me for Christmas;
  19. Get rid of 20 items of clothing (that is a net reduction – if I buy 20 new things and get rid of 20 old things, that doesn’t count – I’d have to get rid of 40 old things. Getting rid of can mean selling, donating, re-purposing, or binning only if it is beyond salvation, as a way of trying to live green).
  20. Finish one computer game per quarter (I’m terrible for buying a bunch of games and then just not finishing them, unless they are Batman or Tomb Raider).

Now, this may be an epic failure, because on the face of it, it breaks a lot of the rules I set out in my goal-setting post. However, take this list with a pinch of salt, because it has two important rules.

  1. My health comes first. If trying to complete these things starts to cause my health to decline, everything else takes a backburner, no guilt, until things are back where they should be.
  2. Even if I remain in perfect health all year, this is a list to try, not a list I will berate myself for not completing. The aim of this list is to be open-minded, try new things, have adventures, and see if I can be a more well-rounded, better-educated person with more experiences at the end of it. I want it to make me into someone who doesn’t put things off for another day (which tends to result in them not getting done ever). If I manage that, this is a success, even if I don’t complete a single category on this list.

I want to do it all, but if I can’t, I’m not going to be unhappy with myself. I will only be unhappy with myself if I don’t even try.

You’ll notice I haven’t put traditional New Year’s guilt goals in there (lose 20 kilos, for example). This list is about making me better and happier through new experiences and good habits, not about guilt.

Project Better Life

My second project is to take control of my life again. Last year, my goals related to singular events that I wanted to achieve, and once achieved (or abandoned) I kind of just drifted along a bit. This year, my focus is broader.

What does reclaiming my life look like? Well, it involves the following:

  1. Using my time productively: instead of mindlessly scrolling the internets or watching something on Netflix I’ve seen a hundred times before, I’m going to use the time in furtherance of my other goals. That might mean reading one of the books from the above list, using my commute to listen to Audible or a new artists,, spending time with my husband, or going to a gym class. My time is valuable and could be used for so many good things. I don’t want to waste it any more.
  2. Follow the two-minute rule: if a task can be done in two minutes, do it. That means no more floordrobe, breakfasts prepped ahead of time, etc.
  3. Being consistent and persevering until I have good habits: I’m going to set myself tasks  and schedules(flexible and subject to illness) to see what sticks and what I can keep up with. For instance, I wake up earlier than my husband, so if I can get a load of laundry into the machine on Saturday mornings before he does, I’ll actually have my favourite undies clean and ready to go each week instead of having to resort to the Emergency Knickers (you know, the ones that aren’t that comfy and maybe give you a wedgie but you just can’t justify throwing them out so you shove them into the back of the drawer and wear them when the other ones aren’t available. I’m sure I’m not the only person with this sort of underpants division). Once things are automatic, they’ll be easier to keep up.
  4. Acting mindfully, deliberately, in pursuit of my long- and short-term goals, and in support of my mental and physical health. I want the choices of what I eat, what I use my time for, what I do at work, to be deliberate and take me in a specific direction. I am going to check back in with my goals regularly to make sure I stay on track.

The reason for this project is simple: endo – any chronic illness, really – robs you of control. I already know that when I have a habit, it is easier to keep it up when I’m lacking in spoons and just want to collapse. I know I sound like a self-help book right now, but I’m feeling positive. I want to ride this wave of energy through the first quarter of the new year and into new, good habits. Once I hit the quarter-year crisis, hopefully I’ll be fore-armed and be able to keep things up on a more long-term basis.

You’ll notice none of the above relate to my endometriosis specifically. You just can’t plan for or control chronic illness. All you can do is deal with it as it happens and keep your mental health strong.

Once again, I’m using my Leaders in Heels ‘Make It Happen‘ planner as a goal-setting tool. I’m not sponsored by LIH or anything; I just really love this planner. It has a great layout and devotes a heap of space to breaking your goals down and referring back to them.

What are your goals and plans, dear readers? What do you want to change this year, if anything? Do you set goals? Once again, please drop recommendations for new music in the comments – new adventures too! I’d also love to hear your thoughts on what you want to see in Bubbles in the Brain this year. Do you have questions about endo you want answered? Topics you wish I’d write about? Let me know.

 

2019: Lessons Learned

It’s been a long time since I’ve posted anything. The reason is very simple: life got in the way, as it often does. In September I was so healthy I was too busy living life to blog; in October and November I was too sick. In December I was just too lazy.

Now, however, I am back, and with a goal of publishing 20 posts this year. Let’s see if I can stick to it – 20 posts for 2020. Expect something roughly every fortnight, barring disasters.

I hope, my dear readers, that you have been well and that endo has not kept you from having a peaceful, enjoyable Christmas break. I’ve been fortunate that mine has been behaving pretty well of late.

Today, I want to kick off the new year by looking back at the old one, and recapping some of the thing I learned during it. You can also read my lessons from 2018 here. Hopefully some of these lessons will also be useful to you. Some might be totally different for you – if your experiences are different to mine please leave a comment below.

1) Big decisions can bring big rewards

At this time last year, I had quit my old job as a litigation lawyer and was waiting to start my new one as a policy lawyer. In other words, I was moving out of the world of appearing in court and arguing about the law and into the world of writing and interpreting it. It was a huge and scary move, but it was so worthwhile. I love my new job; I have learned fantastic new skills, come to appreciate an area of law I never would have previously considered, and met amazing new people. Most of all, my health has benefited enormously. Away from the intense stress of family violence litigation and in a more disability-friendly workplace, my endo pain reduced and I was able to recover when I needed to without pressure or condemnation. If you are considering a similar move, I encourage you to read my post on making this kind of decision.

Another huge decision was coming off the depot shot. I wrote about what factors to consider in making a decision like this last year, and that it how I made this one. Remember that dropping meds may not be a success story for everyone, so think carefully before doing it.

I transitioned to the depot (aka leupron or leuprorolin) after my Zoladex went wildly wrong. Depot was pretty hit and miss for me – it worked well some months, and did nothing at all others, leaving me jumping in and out of menopause like a frog with hot flushes, causing my mood, sleep cycle and weight to go wacky. After it failed yet again in November, I threw my hands up and said, ‘enough is enough.’ I didn’t get my next shot. I was expecting disaster, but instead, things got better. My pain is massively decreased and my weight and sleep patterns are returning to normal. Combined with dietary measures, I’m feeling better than I have since my first operation. I don’t know if being on it gave my body the rest it needed or what, but I’m grateful.

Despite ongoing fears, I plan to keep making big decisions with courage over the next year.

2) There will always be people who refuse to understand

Whether they be doctors, family, annoying strangers, or even other members of the endo community, there are plenty of people who will steadfastly refuse to accept what they are being told about endometriosis if it contradicts their own experience or worldview. I see this constantly in the Australian endo community – sufferers regularly report their experiences with unsympathetic family, colleagues and medical practitioners. I’ve experienced it before too. Try and gently educate if you have the energy, but if it becomes clear that you are banging your head against a brick wall, just leave it. You can only hope that enough people saying the same thing as you will eventually change their minds. In the meantime, your precious energy is better spent elsewhere.

3) We can’t hold ourselves to the same standard as healthy people

By this, I’m not saying we have a license to be awful people. What I’m saying is that we can’t always manage the same activities, and that’s ok. We won’t always get the same results even if we do manage, and that’s ok too. We are not in competition. We can only try our best, seek balance between our health and the rest of our lives, and accept ourselves as enough. Giving our all may not look the same as a healthy person giving our all, and it may cost us much more to do so; don’t try and force yourself to keep up if you can’t.

4) There are so many other illnesses

I hadn’t realised the number of other chronic conditions that so many endo-warriors deal with in addition to endo – fibromyalgia, adenomyosis, chronic fatigue, vaginismus, interstitial cystitis, and polycystic ovarian syndrome, to name a few. We are sickly, sickly children.

We are also more likely than most to suffer the various reproductive cancers – particularly ovarian cancer – because the symptoms are so similar to those we already have that we often don’t seek a diagnosis until it is too late. I’m going to write more on the different reproductive cancers and some of the other secondary conditions I haven’t covered yet a bit later in the year; keep an eye out.

5) Just as people can be cruel or ignorant, they can also be very kind

Not everyone we meet will understand endo or be nice about it, but there are some absolute gems out there. You hear stories of people with endo collapsing at the shops and being helped by random women; of people getting caught short with unpredictable periods and angels with spare pads or tampons standing by; of sufferers with no family being hospitalised and visited by other endo-warriors bearing snacks and magazines. In my own life I have my family and friends, who will do anything to help me when they know things are getting bad.

When you see that kind of beautiful act, treasure it; do what you can to spread it further. The world can seem like a really dark and awful place sometimes, but those little moments bring hope and comfort. In the words of Cinderella: have courage and be kind.

So, those are the main lessons brought home to me in 2019. What did you learn, or have reinforced? Let me know in the comments!

Decisions, Decisions, Part III: Medical Treatment

TW: weight gain/loss, disordered eating, suicide, depression.  

I apologise for my delay in posting, dear readers.  Yet another cold has been kicking my backside.  

I am not a doctor.  Nothing in this post should be considered to be medical advice.

I know for sure that I am not the only endo-haver out there who has had a medication, experienced horrific side-effects, and decided that it simply isn’t worth it, or had second thoughts about whether they should have surgery or not.  These days, I’m relatively confident in making my own decisions about medication and treatment, occasionally in defiance of doctor’s orders.  However, for younger, less confident, or less experienced people, this might seem a very daunting decision,  so I want to write a bit about how you make it.

First, let’s talk about medication or surgery and whether or not you want to take it/have it or stop taking it.

If your doctor is suggesting you go on a new medication, you should ask the following:-

  1. What do you expect the medication/surgery to do? (e.g. reduce pain, remove pain, increase fertility, etc)
  2. How does the medication/surgery work? (e.g. by blocking nerves, by slowing endo growth, by changing hormone levels, removing endometrias)
  3. What are the likely side effects?
  4. What are the possible but unlikely side effects?
  5. Which side effects should I just deal with, which should I see a doctor about, and which should I go to emergency for?
  6. How long will it take to work/relieve my pain?
  7. If it doesn’t work, what are the next steps?
  8. If I don’t take this medication/have the surgery, what will happen?
  9. What are the alternatives?
  10. How much does the surgery/medication cost? (I hate that this question is relevant, but it is.  My current meds are more than $350 every six weeks, which may be a bit more than some people can reasonably afford).

A good (or legally savvy) doctor will tell you stuff like this without asking.  Most medication also lists all this stuff on the leaflet that comes with it, but it’s good to hear it from your doctor (and ensures that they are familiar with what they are prescribing you).

Pay attention to the possible side effects.  Just because a side-effect sounds appalling, don’t assume it will happen to you – remember, the worst side-effects tend to be rare.  However, do look out for effects that will be particularly problematic for you.  If you have thyroid issues, diabetes, or PCOS, watch out for medications that mess with your weight.  If you have a history of disordered eating, pay attention to side-effects that may cause you to lose or gain appetite, either one of which could cause a relapse for you.  If you have a history of depression or suicide attempts, look out for medications which exacerbate those.  If you have concerns of that type about the possible side-effects, raise them with your doctor.  Explain your history, ask how you can manage the symptoms, and talk about what to do if they become an issue.

If your doctor does not acknowledge your concerns or does not take them seriously, go and get a second opinion before taking the medication.  Mental health is serious and you should not mess around with it.

Bear in mind that side-effects for surgery are likely to be far more long-term and less easy to reverse than side-effects for medication.

Many people also ask their peers in support groups or forums online about their experiences with the medication or surgery.  This is all well and good, and can be useful if you are experiencing some unusual effects and want to check you aren’t alone.  However, remember that everyone’s disease and responses are different.  Six people could take the same medication and have extremely different responses.  Just because others in a group have had bad experiences doesn’t mean you will.  Likewise, just because others have liked it doesn’t mean you will.  Ask, by all means, but more to be prepared than to determine whether or not you will take it.

How you actually decide is based on what you value most.  Is the doctor really hopeful about the meds helping you?  How concerned are you by the potential side-effects?  Do you trust the doctor prescribing the medication?  In the end, you have to do a cost-benefit analysis and decide if you think it is right for you.  Generally speaking, I take the approach of “give it a go” with medication, because I can always stop it.  With surgery, I am now fairly cautious, because my first one really messed me up.  That being said, I also had three surgeries between November 2017 and October 2019.  I kind of let my level of desperation for pain relief be the guide on whether or not I have surgery.  Doctors (most doctors, anyway) don’t tend to jump straight to surgery., so generally it is a “desperation” sort of remedy.  However, I don’t know if that is necessarily the soundest reason for making a choice.  Please do consider it all carefully, even when desperate.

Now let’s turn to what you need to consider when deciding to discontinue a medication.  For this, there are really only two questions, unless your doctor calls you in a flap saying something has changed (like they’ve found a cure, or the medication is actually killing you).  These questions are:-

  1. Is it working?
  2. Can you deal with the side effects?

Sucktastic as it is, I have yet to encounter an endo medication that doesn’t have a side-effect.  It’s currently just one of those things that are part of our very annoying fate.

Now, if you answer the above two questions “no”, then the answer is that you should speak to your doctor urgently about discontinuing the medication.  Now, please don’t take this as medical advice, but if a medication is giving me no relief or improvement and the side effects are driving me mad, I will just stop taking it and tell my doctor, not ask them.  This is something I am particularly likely to do if getting in to see my specialist is going to take a while.  I’ll give you an example: Visanne, for me, gave me no relief whatsoever, and in fact made me feel like my pain was worse.  It also gave me a rash of gross, painful, itchy, pustules across my face, neck, shoulders, back, chest and scalp.  It was horrible.  My specialist was a three-hour drive away and appointments would be a few weeks to get.  I just stopped taking it.

It becomes more complex if the medication is actually helping your pain, but also causes you horrific side effects.  At that point, I would generally wait to consult with your doctor if you possibly can, and compare your pain levels on the medication to your pain levels without it.  Which is worse for you, the side effects, or the pain?  What are your alternatives if you stop this medication?

Ultimately, I can’t tell you where to draw the line.  You need to choose what’s best for you, and what you can or can’t live with.  However, I hope that this post has given you some guidance about what to factor into your decision.

Have you had to decide to stop a medication?  What drove your decision?  Is there anything I haven’t considered?  Let me know in the comments!

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 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!