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.

Purchase “Endo Warriors”

You can purchase an MP3 copy of “Endo Warriors” here. You will receive an MP3 file of the song e-mailed straight to your inbox within 3 business days.

A$1.99

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

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.

Good Friday

What an honour it is to celebrate that the Son of Most High God, who is the creator of the entire universe was;

betrayed,

bound,

broken and torn,

falsely accused and charged,

hated,

mocked,

whipped,

crowned with thorns,

spat on,

stripped naked,

nailed to a cross of wood,

separated from His Father and

given the weight and burden of sin,

yet remained silent to change the course of history forever.

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.

 

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Watercolour cloud painted by Alexandra Ellen on 29.1.18

A Must Watch Video on Disability and Employment

The QLD Government released a video yesterday called ‘The No Pile‘ and you need to watch it! The video, co-created and performed by IndelabilityArts, an inclusive theatre company that I’m a member of, uses music and humour to address the issues people with disabilities often have when trying to gain employment, despite being more than capable of doing the job.

The video is part of the “All Abilities Queensland: opportunities for all” campaign launched by the Queensland Government this week and it looks amazing. I was so encouraged to hear that the development process of this plan included consultation with the people whom it would affect the most -people with disabilities. The state disability plan which will be rolled out over the next few years focuses on 5 area’s to make QLD a more inclusive state. These are creating inclusive communities for all people, encouraging lifelong learning, accessibility to everyday services, participation and leadership and improving employment opportunities.

People with disabilities can be completely capable of maintaining employment and excelling at itHiring someone with a disability may mean time flexibility for appointments or creating an accessible workspace. Unfortunately, this means employers usually exclude people with disabilities from employment at their organisation and the rejection excuses people have heard are ridiculous. ‘No Pile’ presents this sad reality in a humorous light because everybody has a role to play.

Watch the video, enjoy and share!!