Endo Warriors

At the end of 2014, I had been experienced chronic pelvic pain for nearly 4 years from Endometriosis. I was about to leave my job because I was too unwell. My marriage was broken and in disarray. I had gained 25kg’s. My self-confidence had plummeted and I had lost hope. It felt like I was at war with this insidious disease and it had one. However, I sought support from other women with Endo and found an incredible sisterhood – particularly online. As a result, I wrote a song about living with and fighting Endometriosis.

About three years ago I had the opportunity to be interviewed for a documentary. Last night I had the privilege to sit in a room with my fellow Endo Sisters and their supporters and watch the finished product, Endo & Us. I also had my first opportunity to sing this song, ‘Endo Warriors’ for an audience, as well as share some of my journey on the panel.

I will share the link to the movie when it’s uploaded at the end of the week 🙂

I promised I’d make the song available tonight, so, here it is 🙂

In the video you will see I messed it up midway through. I was assured it just added to the performance, mimicking real life 😅.

Endo Warriors

So many times, you’ve heard me complain
about my life, that’s devoured by pain
From my waking moment, ’til I fall asleep at night
Endometriosis consumes my life

But I’ve found some comfort, for there are women who share,
give understanding, kindness and empathetic care:

and we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Some symptoms have plagued us for years
and we’ve lost count of the times it’s caused tears.
Our bodies don’t function the way they should
and our relationships are strained, we’re so misunderstood.

But we’ve found other sisters, with whom we share,
give understanding, kindness and empathetic care:

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

We’ll fight for the future
We’ll fight for a cure
We’ll call for more research
We’ll courageously endure!

For we are warriors and we will fight together
We are sisters and will persevere
We’re united with hope in our hearts, wearing gloves of faith
we will not give up – as we fight
to put an end to endo.

Original Recording can also be listened to on my Soundcloud Account:  https://soundcloud.com/alexandra-ellen-mills/endo-warriors-1

28

42474831_291238521603866_8902079414775316480_n

Why,
    why does this day,
    that marks my introduction to this world
    elevate itself above all others?
I do wish,
    I wish this was reality –
    that when the clock strikes midnight
    on this day, life suddenly magical.
It’s as if,
    as if, suddenly, I am happy –
    as if, suddenly, I am glad to be alive –
    as if, suddenly, I don’t resent this day.
Why is today happy?
Why is today good?
Why must I celebrate the day I abhor?
If a birthday was going to help my mental illness – I would have been cured before it even started.

Bad Mental Health Day

Some days are better than others. Some days feel like an impossibility to get through – you’re sapped of energy, of purpose, of initiative, of drive and of hope. You don’t know if tomorrow will be harder or easier, so you do your best to look after yourself as time slowly passes by. That’s depression.

Self Compassion Henry

Henry has learnt how to be an expert at self compassion; choosing to ignoring the internal and external critics and instead, showing himself kindness, grace and acceptance.

We are constantly being compared and comparing ourselves to others. We see our sufferings as weakness. We see mistakes as failures and our illnesses as brokenness. We are constantly believing we are not good enough. I call bull-crap. They’re LIES! All lies.

To endure suffering is strength, to feel emotions makes us human, to persevere makes us strong and to measure ourselves up to no one but ourselves is freedom. The reality is that crap that is out of our control happens all the time. We all have bad, hard, painful and unbearable seasons in life. So instead of beating yourself up (or allowing others to do it for you), remind yourself; you’re doing the best you can, emotions are okay, you’re not perfect (and that’s not only alright, but what makes you human) and that you’re pretty, freaking amazing.

Begin practicing self compassion by putting your hand over your heart and saying to yourself, “may I know kindness. May I know grace. May I know happiness. May I be at peace. May I be at rest. May I know love. May I know empathy. May I show myself compassion.” Or “I am suffering. I am being kind to myself and giving myself permission to feel whatever emotions I am experiencing.

Be like Henry, learn the skill of self compassion. Be kind to yourself and stop beating yourself up! Self-compassion has been a life changing skill for Henry as he manages depression and FND.


Spiritual reflection

For those who believe in God, remember he is a compassionate God, who continually shows compassion to his people.

Is. 49:3 – Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the LORD comforts his people and will have compassion on his afflicted ones.

Jesus is the perfect example of this… oh, and we are also made in His image and are called to imitate His character.

Col. 3:12 – Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.

So, let’s follow God and show compassion to everyone, including ourselves.


Some more information/resources on the concept of self-compassion:

Meet Henry

Meet Henry.

I created him at an Access Arts workshop. He has a depressive disorder & FND. He also loves pink flowers, art, the theatre, chocolate, going on adventures and talking about uncomfortable but important issues.

Keep an eye out for his fun adventures – he’s just taken a trip to space to spread awareness & break stigma about mental illness across the galaxy.

You’re alive. You’ve survived. You got this.”

While I was looking at the 5kgs I put on during my 5 week hospital stay and thinking about the fact I had been in a mental hospital for 5 weeks, I was beating myself up… but then that small, kind compassionate voice reminded me, “you’re alive. You’ve survived. You got this.”

If you’re in recovery be kind to and nurture yourself. Remember; you’re alive. You’ve survived. You can do this.

Fun Fact: Hospital Disharge

‘Fun’ Fact: when you are discharged from hospital, they don’t expect you to leave “well” and ready to fully engage in normal life, as it was before you were unwell. They wait until you’ve made a change in direction, lasting a few days to show you’re moving toward wellness.

I was so surprised when my Psychiatrist told me that’s how it is. So, I leave the psychiatric hospital, returning home tomorrow and I am excited, thrilled and a little bit apprehensive. I’m feeling better than I was 5 weeks ago, but I am not where you may expect me to be in my recovery – I am not yet “well.” The real test will see how I am going in 6 months time.

If someone you love is being discharged from hospital, they need your love and support to adjust back into life, slowly. Realise they’ve just left a safe, regulated environment, where they didn’t have to cook, clean or work. Leaving can be scary.

So maybe offer to clean their toilet, cook a meal, do some dishes, a load of washing or bring over some groceries. Be a legend.

Remember there will be more good days than before, but don’t be surprised when their are bad ones. Remember that and be a legend.

Be patient, be kind, be empathetic, be thoughtful, be compassionate – show love and genuine care. Be a legend! It will be worth it as you see your loved one become more and more ‘themselves’ again.

So, please, be a legend and lower your expectations. They’re still ‘getting better,’ just in a different environment, at home, hopefully with lots of love.

A Psalm: for Depression

Mighty God, Powerful Saviour;

My heart is breaking at its very core.
    When I look at the sinfulness and brokenness of this world,
    the injustice and hypocrisy –

    I just want to leave it all behind, forever.

My body is so tired and weary –
    every movement aches
    every motion is laborsome.
A knot sits in the pit of my stomach –
    I’m nauseous.
    I’ve stopped eating.
I wake during the night –

    my sleep is restless, fragmented.

My brain has turned against me –
    it has become my enemy.
    It has betrayed me,
    it is trying to kill me,
    it wants me to die –

I have no greater enemy than myself.

I am lost,
I am torn,
I am broken,
I am hurting, and

I feel stuck in the depths of this pit of despair.

But you, Lord, you hear my cry,
    you read my thoughts,
    you feel my pain, my anguish –
and you never abandon me,

    you never leave me alone in the mess.

Lord, please deliver me –
    rescue me from myself

    and the web of lies my brain has caught me in.

Lord, lift my soul from this darkness

    and bring me into your glorious light.

Lord, show me your loving kindness –
    your mercy and compassion.

Don’t leave me alone and abandoned in this lifeless pit.

Lord, please remind me
    of your glorious deeds
    and perfect promises

as you fulfil them every day.

I know the day of the Your return is near!
    But please protect and preserve me
    during these dark hours of the night,
that I may not be destroyed in my despair.

 

1517218932428.jpg

Watercolour cloud painted by Alexandra Ellen on 29.1.18