Dear Ella: What I Wish You Knew

It was June 2016 that I was first diagnosed with endometriosis. Since then I have learned a lot of things that I desperately wish I could go back and tell that young woman. If I could, these are some of the things I’d really want her to know. Some of them are personal to me, but most of them have fairly general applicability.

1) Don’t go to that doctor

I had no idea back then that there were different types of gynaecological specialities. I thought it was all much of a muchness. I was originally diagnosed and operated on by a fertility specialist. Whilst she knew about endometriosis, as any gynaecologist should, endometriosis was not her primary area. I don’t know if my increase in suffering after that operation was due to a lack of knowledge and skill on her part, her preference for surgery rather than attempting to manage the condition with medication first, or simply something that would have happened regardless of who I saw. Whichever, I wish I’d seen someone else, because when the problems arose, she was stumped and essentially told me she had no idea how to help me. Which leads me to…

2) Don’t have the surgery

I honestly thought I’d tried every medication I could to reduce my period pain and that surgery was the only option open to me now (an illusion that the abovementioned doctor did nothing to dispel). Whilst surgery is incredibly useful for many people, it was devastating for me and I wish I had been given other alternatives to at least try.

3) Find a doctor that you can trust

I don’t know if I could have done anything about this sooner than I did, because it took a while for me to realise each medical relationship wasn’t working, but I wish I had been with Dr Edi-Osagie from the start. I have yet to present a problem that he hasn’t been willing to try and beat or said something he hasn’t listened to. Previous doctors have either been stumped by my issues or decided that they’ve given me sufficient quality of life and I just need to be satisfied with that. I’m not, and neither is Dr Edi-Osagie. I trust him, and that’s a big deal.

4) Trust yourself more

Endometriosis is one of those diseases that plays tricks on your mind. There’s few visible symptoms, and people around you question and downplay your pain. This makes it very easy to doubt what you are feeling and convince yourself that you are wrong about the severity of your pain and the appropriateness of your reaction to it. The gaslighting effect is horrible and I think it causes delays in getting effective treatment. If I had had more trust in myself, I may not have had a better medical outcome, but I would have been a lot happier.

5) Be prepared for physical changes

I’ve been really struggling with body image (again) lately. Being in menopause has me putting on weight even though I’m exercising regularly and eating well (and yes, my caloric output exceeds my input by a decent margin). Between that and the swelling, I feel a bit like a pig, only without their body confidence and contentment. I wish I could brace my old self for those changes and revel in the body I had while I had it. Not just for looks, too – I’d take it for more runs just to feel the power in my legs, and lift more weights to experience that satisfying burn in my arms.

6) Do your research in the right places

Scouring WebMD for the clinical definition of endo doesn’t prepare you for what it is actually like. Even the list of symptoms is not exhaustive, and some website actually provide complete misinformation (the most common being that pregnancy or hysterectomy will cure you). The best source of information I have ever found is my local endo support group. I have learned so much from them and I should have joined and engaged the second I was diagnosed, checked if I was seeing the right doctor and being given accurate advice, and built connections with women who could help me.

7) Do better record-keeping

This is still something I could improve upon. Record-keeping on both a micro and macro level is really useful. By macro I mean having all your medical records collated and a timeline of major events (diagnoses, procedures, dates of starting and stopping medication). This makes it super easy for you and your doctors to review your history at a glance. By micro, I mean tracking your food, sleep, stress, exercise, mood and pain. This helps alert you to trends and triggers, which teaches you how to help yourself better by avoiding stuff that hurts and engaging in stuff that helps.

8) Understand that your life will change

The biggest thing I was unprepared for was how much I wouldn’t be able to do. I took it for granted that I could sit at a desk for hours at a time, walk 5km and then eat a garlicky meal with onions and beans. I took it for granted that I could shower at the end of a long day. Never did I think I’d become an occasional wheelchair user. I thought I’d be diagnosed, cured, and that was that. In fact…

9) Realise that a diagnosis is just the beginning

If you get a diagnosis and if that diagnosis is confirmed, that is not the beginning of the end. It is not as simple, sadly, as problem then solution. It is problem then several attempts at solutions and then many sub-problems, all requiring different solutions, some of which are in conflict with each other. It is not a simple journey, and while a diagnosis offers some hope, it is not a fait accompli from thereon out. I want to go back and seriously manage 25-year-old me’s expectations.

However…

10) A diagnosis is not the end

I cried the day I was diagnosed. It is scary being told that you have a disease that you didn’t know was there, even if you expected it. It is even scarier realising that you have it for life. I cannot properly convey the enormity of that. It’s not the end, though. Life may be very, very different after a diagnosis, and it may well be harder, but you also learn a lot of things about love, true friendship, your own abilities and limits, and weird medical facts. You have to change your life in a hundred annoying ways, but it does become the new normal and you learn to live with the differences. Endo is chronic but not terminal. While there’s life, there’s hope.

What do you wish you could say to your younger, pre-diagnosis self? Would you do anything differently?

The Lessons of 2018

TW: depression, ableism, general unhappy stuff

2018 was a challenging and scary year.  I once again defied my doctor by seeking a second opinion on whether further surgery was going to help, and then going for it.  I left the organisation I’d worked at for five years.  I adopted a dog and a cat.  I endured massive amounts of pain and dealt with debilitating medication-induced depression.  I also learned some things.

 

1)  The world forgets the sick and disabled

Not the most cheerful starter, I’ll admit.  It’s true, though.  Healthy people (and I’m sure I was guilty of this prior to really suffering from endo) are massively prone to making sweeping statements that reveal that they simply do not factor in the sick and disabled.  For example, “everyone should be able to change a tyre.”  “Saying things are too expensive is just an excuse.”  “There’s no reason not to do this thing.”  They speak from the perspective of a totally healthy person and totally forget that actually, disability and illness are perfectly valid reasons why people can’t do the things they are talking about.  Whether they mean to or not, it is really exclusionary language and it leaves a lot of disabled people sitting there thinking, “What about me?  Why don’t I factor in here at all?”  It’s a really isolating feeling.  It makes you think that the world does not care.  We’re an after-thought at best.

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Image description: a hand pressed up against glass, touching its own reflection.  

 

2)  Some people actively hate the sick and disabled

It’s an attitude I honestly thought had gone the way of the third Reich, but there are real life people existing today that think disabled people are a drain on society, contribute nothing, and therefore have forfeited any right to assistance, and, on occasion, existence.  It was shocking and horrifying for me to learn and I’m a bit ashamed I didn’t understand it fully until last year.

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Image description: Scrabble tiles that spell out “Hi haters”

 

3)  Spoon theory is so applicable

I’ve previously written about spoon theory, and it honestly is such a useful way to describe how I navigate a day.  I became particularly aware of it over Christmas.  We went to stay with my husband’s family in Adelaide, and there were a lot of people there.  I was tired from the drive (it’s at least 12 hours from where we live in the east), my pain levels were quite high, it was hot, and the noise and pressure to socialise just wore my spoons down before I’d really done anything at all.  I felt terrible, because my in-laws were so generous and hospitable, and I ended up spending a good chunk of Christmas Day in bed because it was all I could cope with.  I was spoonless.  Without spoons.  Physically, emotionally and intellectually completely drained.

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Image description: a row of rainbow spoons, ranging from pink to yellow to green to blue, in bubbly liquid

 

4) You have to make the most of the good times

If I have a good day, I need to grab it with both hands and exploit it for all its worth.  That’s the day I need to text my friends and ask if they are free after work.  It’s the day I need to go for a run, clean the house, shop for groceries, walk the dog and cook for the week ahead.  Those days are limited and precious and you never know when they will stop happening, so you have to carpe the heck out of that diem.

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Image description: a cheerful toy sheep next to an insulated coffee mug with a blue check pattern that says, “today is gonna be a good day”

On the flip side, of course…

 

5) Life as a spoonie is a gigantic series of compromises and gambles

If I do too much on a good day, I risk guaranteeing that my next day will be bad.  On the other hand, there’s no guarantee that it won’t be bad anyway, so maybe I should just go for it.  On the other other hand, tomorrow I do have this thing I’m supposed to do so perhaps I should be extra careful.

It’s a similar story with medication.  The mirena is jam-packed with wonderful progesterone that should dramatically slow the growth of my endometriosis.  However, it now turns out that it could be responsible for a whole bunch of my pain.  Meanwhile, my Zoladex definitely reduces my pain but menopause is not exactly a party, and adjusting to it is seriously rough.

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Image description: Five red translucent dice with white spots and two smalls stacks of grey and white poker chips

 

6) A doctor you can work with is worth their weight in gold

I have seen four specialists since my initial diagnosis in 2016.  The first one performed the surgery that sent my endo spiralling downhill.  The second refused to believe that I could possibly have endo in me four months after my initial surgery and seemed like he didn’t believe my pain because he couldn’t provide a reason for it.  The third was great for a while but it felt like, after the second surgery and sticking me full of progesterone devices, that he kind of lost interest and was a bit annoyed that I wanted more relief than I was experiencing.  When I met Dr Edi-Osagie, I finally felt like I had found a doctor who listened and genuinely cared.  The difference that makes is literally making me tear up just thinking about it.  It matters so much.

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Image description: a hand holding a stethoscope against the chest/tummy of a white teddy bear

 

7) Sometimes hard and scary decisions are necessary

Quitting my job was terrifying.  Committing to a third surgery that would cost a lot of money was terrifying.  Every time I take a new medication it is scary because I have such terrible trouble with side-effects.  The decisions we have to make can alter our lives and our bodies, sometimes irrevocably, and there are so many to make.  I’m scared every time, but I’ve got a lot better at taking the plunge because I know I have to.

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Image description: a grey wall with seven identical brown doors reflected in the shiny floor

 

8)  Depression is harder than you can possibly explain

To someone who has never suffered that overwhelming apathy and bleakness it can sound silly, like something you should just be able to pull yourself out of with a little bit of gumption.  You cannot.  It’s like trying to sit up when a giant is stepping on your back.  Even writing it out now I can’t actually convey what it feels like.

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Image description: a person in a black hoodie and blue jeans sitting against a blue wall holding a square piece of red paper over their face.  The paper has an unhappy face drawn on it.

 

9) You cannot overstate the importance of support

I actually can’t imagine what my life would look like if I didn’t have my husband and my parents.  Ok, I can, but I don’t want to, because I would be very poor, living in a pigsty if I hadn’t been evicted for not paying rent, not eating properly, and probably not having the strength to challenge my previous doctors when they started to give up on me.  I certainly wouldn’t have the wonderful life I have now – and it is still a wonderful life, even if the tone of this blog post may be making people question how I feel about it.

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Image description: A circle of six people’s hands, each hand holding the wrist of the next person.

 

10) You are stronger than you think

Novels and movies tend to romanticise suffering somewhat, and so you grow up thinking, “yeah, I’m tough, I could suffer.”  Then you do, and you realise that actually suffering really sucks and you can’t do it after all…but then you can.  Every day that you are still here is another day you’ve kept fighting.  I re-read the phrase, “while there’s life, there’s hope” today, and honestly, I have never appreciated that quote so much.  One day this particular illness may outstrip my capacity to live through it.  I don’t think it will, but it could.  But not today.  There’s hope.

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Image description: a plastic purple dinosaur (maybe a T-Rex?) on a pink background, because dinosaurs are hecking strong and so are we.

 

Did you discover anything new in 2018, either about you or about the world in general?  Let me know in the comments.

Setting Goals

It can be really hard to set goals when you are chronically ill.  You never know if your illness will get in the way of you achieving them, so sometimes you wonder, “why even bother?”  It’s particularly hard at this time of year with all the instagramspirational quotes that start floating around, about how the only barrier is your mindset and all that nonsense.

I still think it is worth it, though.  Without goals, the year ahead can stretch away like the road across the Hay Plains on a hot day – empty, tedious, and exhausting.

Hay Plains - Highway
Image description: A road in the Hay Plains.  A plain tarmac road in very flat, dry country stretching off under a big blue sky.  A single “kangaroo crossing” sign.  https://travelista.club/guides/australia-the-hay-plains/

I find setting goals helps add something to the landscape.  It lets me feel accomplished when I achieve them and gives me something a little closer that endless horizon to rest my eyes on.

There’s a couple of tricks to it, though, in order to prevent you from feeling hopeless or overwhelmed.  Here are mine:-

1.  Use the S.M.A.R.T. method

If it is a big goal, like that favourite of new year resolutions, losing weight, don’t just have that general concept floating around.  The SMART method says that goals should be Specific, Measurable, Attainable, Relevant and Timely.  In other words:-

  • Don’t make your goals too vague.  If you can’t say what success will look like, how will you know when you’ve achieved it?  A generally vague goal, like, “be a better person” is only going to be useful if you can qualify exactly what you mean by that.  Being specific about your steps to achieving that goal is also really useful.  For instance, one of my goals this year is to finish reading the Old Testament.  I have set out specific milestones of when exactly I want to finish each book, and how much I need to read each day to achieve that.
  • To quote lifestyle website YourCoach, “Measurable goals means that you identify exactly what it is you will see, hear and feel when you reach your goal.”  In other words, what will success look like?  Sometimes it’s really obvious – I’ll know when I’ve reached my goal of qualifying as a SCUBA diver when I get my qualification.  In others, it’s a little harder.  For example, I’ll know that I’ve reached my goal of improving my Arabic when I can read any word, even if I can’t translate it, and have a basic conversation about specific subjects.
  • Attainable is the most important one for spoonies.  If you can’t walk 1km without pain, don’t set your sights on climbing Mt Everest this year.  Kosciuszko is probably out of reach too.  I’m not saying you shouldn’t aim high, but aiming high should also be within reality.  “Improve my fitness” and setting smaller, more defined goals might be a more successful choice.  If you set the bar way too high and consistently fail to reach it, your goals will feel like a burden rather than a motivation, and you’ll feel like a failure.  That’s not the point of having goals.
  • Relevant is the “why” for your goal.  Why do you want to achieve the thing?  I want to speak Arabic because I love learning new languages and it’s a handy one to have.  I want to learn to SCUBA dive because I tried it once and it was amazing and I want to be able to do it regularly and safely.  I want to finish the Old Testament because it is important to me to know the Bible so I can better understand my own faith.  I also think goals shouldn’t be too burdensome.  If you are dragging your way through a Goodreads classic reading list because you feel like you have to in order to be a better person but you actually hate classic literature, then drop it.  Find a goal that you won’t hate.  I love classic literature but reading it won’t make you a better person, particularly if you hate every second of it.
  • The original timeliness aspect of SMART planning suggests deadlines, because motivate people into action.  That’s good if those deadlines are going to be achievable, but for spoonies I feel like timelines might be better than deadlines.  It is really hard for us to commit to things with 100% certainty, and deadlines are no different.  Timelines are more suggestions than hard and fast “it must be done by now or else”.  We need still need timeframes for motivation and to make our goals realistic, but we also need flexibility.

On that note…

2.  Be flexible

If you don’t achieve your goal within the specified timeframe, it is not the end of the world (unless your goal is to save the world and there’s some sort of ticking clock I don’t know about, in which case, please don’t be flexible).  I’ve set what I think are realistic goals.  Ideally, I’d like to qualify as a diver by early March, but I may have yet more unforeseen medical expenses or bouts of unpaid sick leave which mean I simply can’t do it financially.  If it can’t happen then, that’s fine.  I can learn to be a mermaid some other time.  Our lives are made up of constant compromises, and sometimes even our big goals have to take a back seat.  That’s totally ok, and you shouldn’t feel like a failure or berate yourself if that happens.  Timeframes may change.  An entire goal may become impossible.  Chances are, it’s not your fault.

That being said…

3.  Hold yourself accountable

This is one of those hard ones where you have to strike a balance between not letting your illness become an excuse not to do something you actually could do, and forgiving yourself when it prevents you from doing something you wanted to.  If you are having a good day, use it (but don’t overdo it).  If you are having a bad day, do what you can but don’t force yourself past your own limits.  Allow yourself time to rest and recover, but don’t let it turn into laziness and slacking off.  Of course, this needs to be set by your standards and your body, not society’s standards in general.  They may think time you need for recovery is slacking off.  It is not.  Don’t buy into that.

So, those are my top three.  I also want to share the planner I’m using this year, because it is absolutely great for goal setting.  I realised I was running out of time, energy and motivation to keep up with a bullet journal and I needed to sacrifice the flexibility it offered me in favour of something pre-planned.  For Christmas my parents gave me this beautiful set from Leaders in Heels.

Make It Happen Bundle
Image Description: a pink notebook with “Nevertheless, She Persisted” on the front, a dark blue note book with, “Think Big, Dream Bigger, Set Goals, Make it Happen – Daily Planner” on the front, and a lilac note book with “Make It Happen – The Leaders in Heels Planner” on the front.  

Whilst it is a little heavy on inspirational quotes and a very shallow, marketable form of  feminism, it does have all the functions I need.  The weekly planner in particular has a big focus on goal-setting using the SMART method, with room for three primary goals (a sensible number, I think).  It has annual, quarterly and monthly reviews, which really encourage reflection and accountability.  The daily planner also has three daily goals.  So far, I’ve had a very productive year.  Normally I flounder a lot when I’m off work because I have no schedule, no clear goals and no accountability.  Sitting down at the beginning of the day and writing down what I want to achieve gives me focus and drive, and it is sooooo satisfying when I achieve all the things on my list.  The third book is just a notebook so I can still do bullet journalling things like make a lot of lists.  9.5/10.  I take half a point off because the weekly planner smooshes Saturday and Sunday together, which I hate.

 

What are your goals for this year?  Do you have plans on how to achieve them?  Will you be rewarding yourself if you get there?  Let me know in the comments.  I also invite my readers to keep me accountable on my goals and nag me throughout the year about achieving them.

Hope

It’s a powerful thing, hope. It makes us keep fighting when we feel like it isn’t worth it, just in case it is, or try a new medication when there is no guarantee it will work. Sometimes you hate it, because you are terrified about the despair you feel when your hope isn’t borne out. I think this makes hoping brave, because we do it despite that fear.

In the spirit of hoping, I’ve been writing a quote about hope in my diary each day this week. I want to share them with you to start this year off with some positivity, because what says “hope” more than a new year?

1) “I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re doing something.” – Neil Gaiman

Now, being me, I do have a problem with this quote, because I think it veers close to “you have to do something to mean something” territory, which I think it just wrong. People have inherent value. However, it does very much embody the spirit of the new year, which is that sense of “now I will achieve something.” Taken with a grain of spoonie salt, I also think it is a valuable reminder that we never stop learning, and there is value in each lesson (even the ones that suck to learn). It is an encouragement to do something – anything – to break through the ennui that can come with long-term pain and isolation. And ultimately, I think it places values on our battles and our victories, even the seemingly tiny ones, like getting out of bed when we didn’t think we could.  So, whilst I don’t necessarily want to make mistakes, I do hope I do enough that mistakes are a possibility.

2) “Hope smiles from the threshold of the year to come, whispering, “it will be better.”” – Alfred, Lord Tennyson

I love me some Tennyson. This quote just embodies everything I feel just before the new year comes – this one has to be better.  Maybe it won’t be, but hope thinks it will.

3) ““Hope” is the thing with feathers –

That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.”
– Emily Dickinson
Admittedly this is one the longer side, and a poem, but I love Emily Dickinson, and I love this portrayal of hope.  It talks about the value of hope itself: its persistence, its ability to survive even the worst storms, how it comforts us, and how it is always with us.
4) “Hope is being able to see that there is light despite all of the darkness.”  – Desmond Tutu
I don’t think my hope is necessarily as strong as this at times, but at least it is never less than “thinking there possibly could be light at some point.”  That’s a lot less catchy, though.
5) “We must accept finite disappointment, but never lose infinite hope.”  – Martin Luther King Jr.
This one will be most applicable for my religious and spiritual readers, but I couldn’t leave it out because for me it is such a good descriptor of my faith in hard times.  The Bible is pretty clear that this life is going to be full of hardships and woes, sometimes catastrophically so, and often without any reason that we can see.  However, the Bible is also clear that these things do end, and at the conclusion of it all is the reason Christians have hope at all – Jesus and a new, better life with him.  During my darkest times, even if the rest of my life looks like a barren, careerless, pointless, painful mess, at least I can set my eyes on that.
6) “There never was a night or a problem that could defeat sunrise or hope.”  – Bernard Williams
Night is so often used as a metaphor to explain away our problems – we all have to go through dark periods, darkest just before the dawn, etc etc – but what I like about this quote is that it isn’t saying sunrise brings a solution.  It’s just saying that hope is persistent.  Even when problem after problem tells us we shouldn’t hope, it comes back like the dawn each time.
BONUS QUOTE:
There have only been six days since the new year but you get a bonus one anyway because I’m benevolent like that.
7) “Though hope is frail, it’s hard to kill.”  – When You Believe, The Prince of Egypt
If you haven’t seen the movie Prince of Egypt, you should.  The soundtrack is great and it is the grittiest, most realistic portrayal of Exodus I’ve ever seen.  Far more so than the movie Exodus, which I thought was fairly bad.  I digress.
This song is sung as the Hebrews flee Egypt.  Their people have been slaves for generations.  The Egyptians have been cracking down on them, raising the quotas of bricks they must produce and reducing their materials.  One random who used to be a prince has shown up out of the desert and said, “worry not, pals, God’s going to release you.”  They’ve had no hope for years, and this is a pretty slim one.  Now it’s come true and they are heading out into the desert with only what they can carry, amongst them children and the elderly, and they will soon have half the Egyptian army on their tail.  It’s a time with not a lot of hope, but it’s all they’ve got, and the song is just excellent.  I’ll post the lyrics below, but first watch this incredibly low-resolution video to hear it and see it in all it’s glory:
If you want a faithful lyrical version, Celtic Woman do a lovely one.  If you want a less faithful one, Mariah and Whitney also have a version.
Lyrics:
[MIRIAM]
[Verse 1]
Many nights we’ve prayed
With no proof anyone could hear
In our hearts a hopeful song we barely understood
Now we are not afraid
Although we know there’s much to fear
We were moving mountains long before we knew we could

[Chorus]
There can be miracles when you believe
Though hope is frail it’s hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe

[TZIPPORAH]
[Verse 2]
In this time of fear when prayer so often proved in vain
Hope seemed like the summer birds
Too swiftly flown away
Yet now I’m standing here

[MIRIAM]
Now I’m standing here

[TZIPPORAH]
With heart so full I can’t explain

[MIRIAM & TZIPPORAH]
Seeking faith and speaking words I never thought I’d say

[Chorus]
There can be miracles when you believe
(When you believe)
Though hope is frail it’s hard to kill
(It’s hard to kill)
Who knows what miracles you can achieve
(You can achieve)
When you believe, somehow you will
You will when you believe

[Bridge]
[HEBREW CHILDREN]
Ashira l’adonai; ki gaoj ga-ah
Ashira l’adonai; ki gaoj ga-ah
Mi chamocha baelim adonai
Mi kamocha nedar ba kodesh
Nachita v’chas-d’cha am zu ga-alta
Nachita v’chas-d’cha am zu ga-alta
Ashira, ashira, ashira

Ashira l’adonai; ki gaoj ga-ah
Ashira l’adonai; ki gaoj ga-ah
Mi chamocha baelim adonai
Mi kamocha nedar ba kodesh
Nachita v’chas-d’cha am zu ga-alta
Nachita v’chas-d’cha am zu ga-alta
Ashira, ashira, ashira!

[Chorus]
[ALL]
There can be miracles when you believe
Though hope is frail it’s hard to kill
(It’s hard to kill)
Who knows what miracles you can achieve
(You can achieve)
When you believe, somehow you will
Now you will
You will when you believe
(When you believe)

[MIRIAM & TZIPPORAH]
You will when you believe.

So, go forth into the new year with fresh hope, my friends.  You never know what this one holds.

Happy New Year: Change, Surrender and Big Decisions

TW: domestic violence, assault, sexual assault, child abuse, animal abuse

2018, like so many other years, has not been easy, but it has been big.  I spent around 3 months in total off sick. I had my third operation in two years.  I battled medically-induced depression, went into menopause twice, visited my homeland again, celebrated my second wedding anniversary and adopted two beautiful animals.  Most dramatically, though, I learned when to quit.  Literally.

I’ve worked in the same place, with one minor break, since January 2014.  I started as a volunteer paralegal.  In September that year I started as a part-time paid paralegal.  In July 2015 I finished my Masters of Law and my BA (Hons) and went full time.  In January 2016 I was promoted to a senior paralegal position and moved to a different section.  In August that year I become a solicitor.  I’ve never worked anywhere else as a lawyer.  I met my husband there.  I was instilled with a love of law there.  And, in the final work week of 2018, I quit.

This wasn’t a totally spur-of-the-moment decision.  A few months back I applied for a job elsewhere on something of a whim, and was moved into a merit pool.  I didn’t really expect anything to come of it.  However, the Friday just before that last week, I got a call offering me a position.  Two days later, I accepted it.

It was an incredibly difficult decision in many ways.  In my old job, I was a litigation lawyer.  I was in court at least three days a week, and meeting with clients or preparing for cases the rest.  Most days I would be appearing with less than an hour to prepare.  I was helping extremely vulnerable people.  I acted on behalf of domestic violence victims, the homeless and the mentally ill.  I got to argue points of law with magistrates who seemed hell-bent on confusing me, and work with angry clients who were not too far from assaulting me.  It was often incredibly rewarding, but, as I’m sure you can guess, extremely physically exhausting.

In addition to the time pressures that any legal job has – file this by 10am, send this letter out by 5pm, subpoena these documents by Wednesday – you also have a bunch of other unique stresses.  There is the belly-churning stage-fright you get before appearing in front of a magistrate, the pressure not to embarrass yourself in front of your colleagues, client and court by stuffing up.  There’s the emotional burden and vicarious trauma you take on by hearing stories of domestic violence – often involving serious physical and sexual assault, sometimes against children and animals – every day.  There’s the standards you hold yourself too to be the best lawyer possible, standards that are drilled into you irrevocably in the hyper-competitive environment of law school.

There’s also a hefty dose of physical exhaustion.  In addition to travel between the office and court (walking distance, in my case, so walking it is), there is an inordinate amount of running around involved in court work.  You have to chase around after a seemingly endless stream of clients, registrars, associates, other lawyers and even your colleagues, none of whom are ever where you need them to be.  There’s the inevitable last-minute change of courtroom because the lights aren’t working in courtroom 5, or because the magistrate that was hearing your application now has to do an emergency bail hearing instead.  There’s the frantic jack-in-a-box hopping up and down that a lawyer needs to do in the courtroom to demonstrate respect for the court.  All in all, combined with the mental and emotional stress, the job is incredibly exhausting, and I simply can’t do it any more.

I am extremely sad.  I love litigation.  I love the thrill of winning a point or getting a good outcome for a client.  I like the challenge and the test to my skills.  I love arguing (as my family will probably attest).  Not only that, but I’m moving away from some truly fantastic colleagues whom I will desperately miss.

Moreover, it’s a huge change in mindset for me.  Three years ago I knew beyond any shadow of a doubt that I wanted to be a family lawyer.  I would do five years of practice, then get accredited as an Independent Children’s Lawyer, maybe even a mediator, and after ten years I would do my specialist accreditation in family law.  Now I’m moving into a government organisation working in a policy role that has nothing to do with litigation, family law, or domestic violence.  I’ve had to give up an entire future because my body was wearing out faster than I could replenish it. I’ve had to hugely re-evaluate where my life is heading and what I want to do.

In all honesty, now I don’t know.  A lot hinges on 2019.  I may hate this job and scramble back into litigation and work until it breaks me beyond repair (I hope I’ll have more sense than that).  Alternatively, I may love it, and be happy to never go back.  I may change career several more times, as my generation apparently does.  Right now, I have no idea what the future holds.  It’s scary, but I’m ready.  I’ve got my positive brain engaged.  This is a new opportunity to discover what else I’m good at and see if I love other things too.  It’s a new workplace, next to a beautiful walking track and near to my sister.  It’s also (I sincerely hope) a physically easier job, that will give my poor body the chance to heal that it so desperately needs, so that I can actually get back to building a career (whatever that looks like).

I’m proud of myself for taking this step.  Yes, I quit.  I gave up.  Some might say I failed.  Whatever.  Sometimes, quitting is what you need to do.  It was the right decision for my health, and hopefully for my family too.  It was scary, but I had the courage to do it anyway.  2018 was a year for courage.  2019 is going to be a year for perseverance, as I stick to the scary decisions I have made and see them through to their end.  I’m ready.  I’m happy.  Bring it on.

I hope your 2019 is full of hope, happiness, and beautiful surprises.  I wish for strength, endurance, courage and beautiful, painless moments for all of you.

Gift Guide for Spoonies with Endometriosis

It’s that time of year where people start panicking about what to give other people for Christmas.  I want to give you some ideas about what to give your favourite sickie (or even just the one you got assigned in the office Secret Santa).

Now, don’t for a moment think that you have to get a chronically ill person something related to their illness.  Our illnesses don’t define us and we all have things we want outside of treatment.  The top, number one gift you can get a sick person is something they actually want but wouldn’t normally buy themselves.  The other top number one gifts are cash, because cash is excellent and sick people often don’t have much, and your time, sympathy and practical assistance.  However, if you don’t know them that well, or really want to get them something to assist with their fight with endometriosis, read on.

1)  A TENS Machine

There are plenty of options for TENS machines on the market these days, from the discreet (think Painmate or Livia) to the hardcore.  They range in price, too – a Painmate will set you back around $50 (or $0 if you win my Christmas giveaway!) whereas a Livia kit is on sale at $198 right now.  TENSMachinesAustralia sells a variety ranging from $100 to $200+.

2)  An upgraded heat pack

One thing that is common between most chronically ill people is that we tend to spend our spare disposable income on our illness, so when it comes to the necessities like heat packs we go for the utilitarian.  A novelty heat pack like this cat one,  or one of these exotic animals, is still a good shape for the pelvis whilst being a bit more fun and cute than your standard wheat bag.

Another nice alternative, if the person in question doesn’t have any issues with scents, is a scented one.  I have a lavender one that I just adore.

Another great option is an electric heat pad.  I can’t for the life of me find the one I use, which I nabbed in a large chemist one day.  Basically, they are like mini-electric blankets and are great, because the sick person doesn’t have to repeatedly go to the microwave to reheat the thing.

3)  An iTunes voucher or Netflix/HBO/Stan/Hulu subscription

People with a chronic illness are stuck at home a lot.  A iTunes voucher will let them buy another movie or TV show, some good music, or some fun apps.  This is a gift that can suit any budget, of course, because you get to choose the amount you give.  Alternatively, a subscription to a streaming service lets them have a month (or a few, depending on your budget) of a whole range of movies and tv shows to binge.

4)  Nice pyjamas, dressing gown or slippers

When I’m healthy, I generally dress to the nines.  When I’m sick, I will rarely wear anything more exciting than pyjamas.  They are comfy and comforting.  They grow with my poor sore belly and let me sleep whenever I need.  Whether it is a soft $10 flannelette pair of bottoms from Kmart or you splash out on some themed fun sets from Peter Alexander, bed clothes and accessories will never go amiss.

5) Tea 

Maybe this is just because I’m British, but tea is an incredibly comforting drink.  It comes in so many varieties, so there’s something for everything, and with the choice of cold infusions there’s an option for every season, too.  It’s often a better alternative than coffee because caffeine can make some people’s endometriosis go a bit wild.  Get together a box of really fancy tea bags, or a nice selection of loose leaf.  If they aren’t a tea person, maybe a nice hot chocolate would be more their style.

6)  A Weighted Blanket

Ok, these are pricey (around $150-$200+), so these are probably not good for a Secret Santa option.  However, they are incredibly comforting to some people with chronic pain because the weight is bizarrely relaxing.  It could just be me, but I find having something heavy on top of me forces me to relax effectively, and a weighted blanket achieves that without the heat of multiple covers.

7) An Audible Subscription

If you are stuck at home a lot but are too tired to hold a book up, or you are waiting in emergency rooms for hours at a time, audio books can be a great way to pass the time.  I love Audible (I have the UK subscription, not the Australian one) as it has so many books on there.  I effectively pay $14.50 (depending on the exchange rate) for a new book every month.  The books in my library range from a breezy 4 hours to a whopping 70 hours of entertainment each.  Some classics are free.  Consider buying someone a few months, and they can always cancel it if they don’t like it after that.

8)  A Subscription Box

The gifts that keep on giving, subscription boxes are great, particularly for someone stuck at home, because it is undeniably exciting to receive a little something every month or so.  There are subscription boxes for literally everything, from underwear to makeup to coffee to veganism to some specifically for chronic illness.  There really is something for everyone.  A particularly useful one for your spoonie friend may be a subscription to a meal delivery box, such as Soulara or Hello Fresh.  I cannot overstate how much of a chore meals can be when you are in pain and under pressure from your treating team to maintain a healthy diet.

9)  A Cleaning Service

Chores can be absurdly hard for people with chronic illness.  If you are happy to pay for a cleaner to come in and help your friend even just once a week or once a fortnight, that’s a huge burden off them.  It gives them the comfort of knowing that, even if they have a bad day (or several) and let things go, someone will be there to help them excavate a hole in the trash pile they may be forced to create.

10) A Hamper of Goodies

Bath salts, body butters, edible treats, magazines, puzzle books, actual books, scented candles, essential oils, fluffy socks – whatever you want to put in a hamper, you can.  You can make it tiny with just some chocolates and hair ties, if you are on a limited budget, or you can get wildly extravagant with a plush dressing gown and bed linen, if you are a millionaire who shopped the Sheridan sale last Black Friday.  This is a gift you can customise for any budget and any recipient, and would go down a treat with anyone I know.

 

I hope this is of some help for anyone out there shopping for a loved one (or an I’ve-met-them-a-couple-of-times-by-the-coffee-machine-one) this Christmas.  What have you bought for people with endo in the past?  People with endo, what would you really love to receive?  Let me know in the comments, and don’t forget to enter the Christmas giveaway!

Christmas Giveaway!

It’s finally December, which means it’s nearly Christmas!  I love Christmas.  It’s my favourite holiday of the year and I love the atmosphere of family, happiness and giving that I associate with it.  I want to share some of that with my readers, so I am very excited to announce the first big event for this blog: a Christmas Giveaway!  I foreshadowed this and I am really hoping that it benefits the winner.

But the important question is: what do you win?

My friends, you win a Painmate, valued at $50.

PAINmate TENS Machine
Image description: Painmate, a portable TENS device.

I’ve mentioned this little trooper before.  It’s a battery-powered, stick-on TENS device that you can wear under your clothes.  It’s very discreet and has a whole range of power settings, from barely-even-tickles to I-can’t-feel-my-legs.

The next important question is: how do you win it?

My friends, you win it in three simple steps:

  1. Follow this blog;
  2. Follow Bubbles in the Brain on facebook;
  3. Comment on this post with your facebook name so I can verify that you have done both.

The winner will be drawn randomly through the very sophisticated method of putting all your names in a bowl and picking one with my eyes closed on 15 December. I will then contact the winner to organise delivery of your prize!

Is there a catch?  Yes, there is.  This giveaway is only open to people in Australia (sorry!) due to exorbitant international shipping.  I’m hoping that future giveaways will be able to be open to all, but go easy on me, it’s my first one.  This will be a nice change for Australians, as typically we don’t get to participate in things for the same reason.

Tip for the Painmate: whilst you will need to buy spare battery packs to get new sticky pads, the batteries run out faster than the pads.  If you just need a new battery, buy a cheap packet of watch batteries from the supermarket in the right size.  They are far cheaper and last longer.

Happy nearly-Christmas!

 

Fighting Fatigue

Sometimes I think the single worst enemy of the chronically ill, aside from the actual illness, is fatigue.  It’s pervasive.  It’s debilitating.  It lingers, and it won’t go.  It lowers your immune system, makes you more susceptible to pain, slows your thought process and just makes it nigh-on impossible to exist like a normal human being.  

It’s particularly bad when you start your week exhausted.  Those who read my last post will know that I was up until around 4am on Sunday night (well, Monday morning by that time) accidentally tripping my face off on tramadol.  Do not recommend.  The net result, for a girl whose alarm goes off shortly after 6am, was very little sleep.  I went in late to work so I could catch up on some extra rest (and wait for the horrific weakness and shaking to pass), but it wasn’t enough.  

The other thing about fatigue is that it is cumulative.  Each day of legal work, no matter how exciting, is tiring.  Your brain is doing a million things, you never have enough time to finish all the things you’d like to, and if you work in litigation, you are probably on the go between courtrooms, offices and the local corner shop for chocolate several times a day.  My spoons, never high at the best of time, were seriously depleted by Sunday night; each day took away a little more.  On Friday, I had literally none left.  I woke up so exhausted I could barely move.  The toilet door, all of two feet from my bed, seemed like a million miles.  Moving my arms to my phone to email work took everything I had.

This may seem like a lazy millennial exaggeration (not a stereotype I appreciate, by the way).  “Ugh, I’m soooo tired.”  Other spoonies know.  It’s exhaustion beyond the point of comprehension.  Literally, I was so tired I couldn’t understand it.  You feel pressed down by a physical weight.  It’s not like you’re underwater, it’s like you’re under mud.  Thick, quagmire, sucking-you-down type mud.  

Of course, because I was tired, I had no reserves to deal with the post-op pain.  Whether it was objectively worse than usual or I simply felt it to be worse, I’m not sure (although it felt pretty bad).  I also had a blocked nose, with a headache and sinus pain and a croaky throat.  Thankfully they have mostly passed.  I was convinced I was getting another interminable cold.  In any case, there was only one possible solution for this kind of exhaustion – to go back to sleep.

That’s the big problem with trying to fight fatigue.  You might be able to stave off the sleep debt for a few days, snatching extra hours where you can and chugging caffeinated beverages where you can’t.  Ultimately, though, it will always build to the point where it becomes so big a monster that you can’t fight it off any more and it simply overwhelms you.  I’m disappointed it got me on Friday, and that I couldn’t hold out one more day, but that’s the reality of chronic illness – you can’t always go the distance and you always have to pay the price for trying to.  

Pills and Thrills

CW: drug use

Does anyone else get really really annoyed at the number of side-effects doctors expect us to tolerate?  

I warn you now, this is a rant and not a useful post.

On Sunday night I was in bad pain.  I don’t really know why or what was causing it, but I knew it hurt more than I could cope with and that I needed to be at work the next day.  So I did what I have been told to do when the pain gets really bad, and took some tramadol.  

I haven’t taken tramadol in a long time because it has a habit of making me a bit whacked out.  I avoid endone for much the same reason.  Both make me spacey and sleepy but send my mind racing at a million miles an hour, leaving my super-active brain stuck in a body that feels like it is suffering sleep paralysis.  I also don’t feel that they have much of an impact on my pain levels.  The next day I feel weak and shaky.  I don’t really like either of them.  Also, they both make you constipated.

Sunday night took things to a new level.  I took my tramadol at around 9pm.  I was fine at first in terms of side-effects and went to bed with a heatpack to wait the pain out. Half an hour later I was genuinely concerned that the doctors had replaced my innocent painkillers with hardcore hallucinogens.  

I’ll preface the rest of my experience by saying I’ve never taken illicit drugs of any kind.  I’ve never even been drunk.  I have no interest in perception-altering substances, so drug users out there may read this and go, “ah, you innocent child, thinking this is bad.”  I don’t know.  My poor little mind was bending.  

By midnight I was still not asleep.  My brain had carried out a really, really detailed mediation between my cat and my dog.  I could talk to animals, you see.  I forced myself to get up and go to the loo and was swaying like a drunk woman.  I could feel the world tilting, melting and floating around me, like my foothold on the earth was tenuous at best.  

When I got back to bed, I started crying because I felt like my arms were melting into one another, and I couldn’t tell my elbows apart.  I felt like my hands were on backwards.  I was being eaten by the bed.  I couldn’t move.  I could just about articulate to my husband what was happening, and I know I sounded pathetic and barely coherent.  

I was awake, my mind racing and my body distorting, until around 4am.  It was nightmarish.  I felt like I was living the Coraline movie.  

When I woke up the next morning, my body was wracked by tremors and I was so weak I could barely hold my phone to send an email to work saying I’d be late.  I was dizzy and nauseous.  The whole day I was tired and weak, couldn’t eat properly until mid-afternoon, and was really struggling to articulate my thoughts.  I would just lose the ability to say things halfway through the sentence, even though my brain was making the right pictures.

The only thing that made my pain reduce?  Time.  And quite frankly, even if the tramadol had worked, I’m not sure it would be worth the hassle.  

I know that I’m far from the only person to experience problems with the pills meant to relieve pain.  I’m far from the only person to have horrible side-effects with something as fundamental to the treatment of endometriosis as hormonal birth control.  I consider the issues I get – bloating, abdominal pain, tender breasts, mood swings, weird cravings, reduced energy – to be relatively minor, because we are told they are common and not really worth troubling a doctor about.  

Why are we expected to have to deal with this?  Why must sick people choose between pain and suffering from their illness and pain and suffering from their treatment?  Why am I in the situation where I’m forced to call in sick, not because I am ill, but because I attempted to use my prescribed medication?  Why, if I go to the emergency department, will I be offered endone as my only option, and be kicked out as soon as I take it?  What else can I possibly do?

Gosh, I hate endo.  

Total Pelvic Peritoneal Excision: One Month On

One month ago today I had the surgery I desperately wanted.  Regular readers will know that, sick of incredibly debilitating pain and sick of being told to wait it out, I contacted Dr Edi-Osagie in England and asked him to undertake a surgery I couldn’t get an Australian doctor to do: Total Pelvic Peritoneal Excision (TPPE).  Today I want to share with you my experience of this surgery and my recovery over the past month.

Unlike a normal excision, which simply digs individual lesions out of the peritoneum, or lining, of the organs and pelvic wall, TPPE also removes the peritoneum so that endo has nothing to grow back on.  In my case, the good doctor did this to the back of my uterus and my urethra, which was where the endometriosis was growing in my case.  

I much preferred the preparation for the surgery than what we have in Australia.  In Australia, you have to drink a variety of icky liquids that give you appalling diarrhoea, and not eat for a day. For this surgery, I simply fasted overnight and had an enema.  Embarrassing?  A little.  But honestly, I’d rather have a nice professional nurse sticking whatever it was up my bottom than drink litres of glop so foul-tasting that it’s even odds as to whether you expel your insides through your mouth or your backside.  For those who’ve never had surgery, I cannot properly convey how bad that stuff tastes, particularly when you haven’t been able to eat all day, and have been on “white foods” only before that.

The day before the surgery I had all my testing and whatnot, and the day of I met a whole reel of nurses, my anaesthetist, and finally, Dr Edi-Osagie. Due to distance, we’d only chatted on Skype before this.  He is as lovely in person as he seemed on the computer, and was very careful to ensure that I understood what was going on and had no fears about it.  He was very thorough in his post-surgery explanation too, taking me through all the photos of my innards (which I got to keep!) and, unlike many surgeons, waiting until I was awake and functional before speaking to me. I’ve had previous surgeons explain to me while I’m still drifting in and out of an anaesthetic haze, and by the time I woke up properly, I would only retain about 1/10th of what they were saying.  By waiting til the next day, Dr Edi-Osagie ensured I actually would remember and understand what he said.  

Initial recovery from was painful, although no worse than my last excision.  As with last time, I woke up in recovery with the shakes.  Jury is out on whether this is pain or cold or both, but an extra warm blanket and having control of my own morphine supply sorted it out.  I remained fairly dependant on the morphine until mid-afternoon, but after that did not need to use it again.  By the evening I was sitting up and had my catheter removed so I could use the toilet independently.  By mid-morning the next day, I was ready to go home. 

A note for vegans: the hospital I was in did not have any vegan options for dinner.  Bring something.  

The biggest problem initially in my recovery was the shoulder-tip pain. When you have laparoscopic surgery they blow up your abdomen with gas so that they have room to work inside your pelvis.  Not all of that gas comes out immediately, and it can bounce around your diaphragm and up into your shoulders, leaving agonising pain in its wake.  It’s kind of like having a stitch, but 100x worse.  The only thing you can do is try to move to a different position, use heatpacks, and drink lots of peppermint tea.  

Once the shoulder pain started to reduce, I became aware of a new problem: constipation.  The trouble with morphine, codeine and tramadol, all of which I used post-surgery, is that they constipate you terribly.  I’m normally a 2-3 times a day type of girl.  My surgery was on Sunday, and I did not poop again until Wednesday.  When I did, I was stuck in the loo for about 20 minutes because things were so slow-moving.  My poor insides felt so bruised.  

Lately I have also been experiencing bladder pain.  Urination has been uncomfortable since the surgery due to my urethra being stripped all the way back, but a week ago my bladder or uterus or something in there was in agony when I peed.  It is calmer now, but still uncomfortable. It isn’t a UTI – there’s no burning and I’ve had it tested just in case – but boy, it’s not fun.

Overall, recovery from the actual surgery has been remarkably good.  I have four little incisions, which have all healed beautifully. My peritoneum is about 3/4 regrown now, apparently.  I did about a 5km walk less than two weeks after the surgery without too much trouble. Walking wasn’t really a problem at all after about a  week or so, although standing still remains an issue, so I used a wheelchair for things like shopping or going to museums, where you walk and then stop, walk and then stop.  

One month on and I’m fairly certain that all my remaining issues are attributable to my new mirena.  I find the adjustment period for the mirena really rough, and I’ve had ongoing spates of bleeding and period pain (not necessarily related to each other) for the past two weeks. If those aren’t gone soon, I’m going to talk to someone about having the mirena removed and see how I go without it.  

It is really nice not having endo pain in the way I have come to know it.  If I can get rid of the mirena pain I’ll be a happy little chappy.  At the moment, I’d definitely rate the surgery as a positive experience.  I hope to know properly by the new year whether it has really worked or not, and I will keep you all updated.