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 ūüôā

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

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

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

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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.

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

30 Ways to Creatively Engage with your Illness

It’s easy to lose interest in life when you’re consumed with pain, depression and other awful symptoms. I’ve found engaging with my illnesses and experience creatively very empowering.

You don‚Äôt have to be the next Van Gough, Ansel Adams, Sylvia Plath, PewDiePie or Alicia Keys to be creative. I have compiled a list if¬†‚Äėcreative‚Äô things you can have a go at, even if you think you suck.

By creative, I mean expressing yourself in an imaginative, artistic, innovative, inspirational, personal or unique way. You can ‘creatively engage’ with your illness by using any creative medium to:

  • process the¬†pain and grief your illness has caused;
  • externalise overwhelming¬†feelings;
  • articulate acceptance;
  • rest and relax;
  • create awareness about your illness;
  • reach out for support;
  • distract yourself for a while;
  • innovate a way to re-engage with an activity your illness has prevented you from doing;
  • encourage others to persevere;
  • show¬†others¬†they’re not alone in their illness;
  • remind yourself that you have hope;
  • share your story and experience;
  • reveal your resilience and strength;
  • ask for support;
  • project positivity;
  • express gratitude, and
  • break stigma.

Here is a list of 30 ways you can engage creatively as another tool to help you manage your journey with chronic illness.

morethanmanysparrows1. Go for a stroll in the park, a walk on the beach or simply sit in your sunny backyard and take a few pictures. Anyone can take a photo of the grass, a tree, a bird, the clouds and the sun on their phone. If you’re feeling a bit crazy, add your favourite filter.

2. Pick a photo you have taken, or download a free stock image and add the cheesiest quote you can find (or your favourite quote or verse from scripture.) You can use a photo editing program (like Photoshop or GIMP), a website (like Canva), or even Microsoft Word.

10383479_660858887316291_6416940749823705263_n3. Type and print encouraging statements with fun fonts to put on your wall.

4. Print your favourite family or holiday photos and make a collage. If you’re renting and don’t want to risk ruining the walls with blue tac, you can get a whiteboard or cork-board. I spray painted an ugly room divider to use as a giant pin board. …or you could finally scrapbook those holiday and baby photos.

5.¬†Give colouring-in a try. The adult colouring in fad has¬†taken the world by storm, have you tried it yet? Buy one from Kmart or your local bookstore, borrow your child’s¬†activity book or find a picture to print through a¬†‘Google Images‘ search.

6.Communicate with pictures. Visualise your how you feel and¬†what it’s like to live with your illness and paint or draw¬†it.

244319_151690988233086_385182_o7. Experiment! Go crazy, painting, sketching and blending¬†with different¬†mediums.¬†Most¬†variety¬†shops sell (oil, soft and hard)¬†pastels, charcoal, (acrylic, watercolour and oil)¬†paint and canvas pads. Experimenting is fun and can be¬†a great distraction. On bad days I’ve been known to see how many shades¬†of black, white and grey I can mix into one picture. When¬†I‚Äôm feeling a bit more optimistic, I’ll play with¬†colour.

8. I’m an awful drawer, but sometimes it’s fun to sketch. My favourite is creating stick-figure comics.

9. Too scared to try karaoke? You can now download karaoke apps onto your phone or tablet to take ‚Äėsinging in the shower‚Äô to the next level.

10. Pick up the musical instrument you haven‚Äôt played in years. We all have a¬†recorder hidden at the back of our wardrobe. My preference is the guitar – after 10 years I still can’t read music.

11. Write a song to share what it’s like having your illness and¬†encourage others.

12. Don’t have a musical bone in your body? Try changing the lyrics to a song or nursery rhyme.

13. Create playlists for every occasion: to relax, feel like singing, angst, fight songs, etc.mr-g-gif (1)

14. Make up an interpretive dance ‚Äď I can never go past Vanessa Carlton‚Äôs 1000 Miles.

15. Write a short story.

16. Create a character you can relate to and write a monologue, one-act play, radio script or a short film to explore and communicate the characters journey.

17. Start a journal/diary, blogging or (and you don’t have to edit and publish it for the world to see, but if you have a laptop with a webcam) a video journal. tumblr_n6eu9xazEC1s79tl2o1_500.gif

18. Write a poem ‚Äď if you don‚Äôt ‚Äėdo poetry‚Äô you could always start with a simple HaikuUntitled design or¬†Limerick.

19.Write a letter to yourself.

20. Turn statistics, research and (accurate) medical information into an infographic.

21. Put on an apron and be a MasterChef by cooking your favourite cuisine or experimenting with a classic dish.

22. Create the next ‚ÄėParalympic Sport‚Äô ‚Äď if there is a physical activity/sport you love, but can no longer play it due to your illness, come up with an adaptation that fits your physical
limitations.535131_752938168174916_8494518392625972808_n

23. Knit! You can never have too many scarves, beanies or comfort blankets. This beautifully adorable yellow teddy was made by Lee Miller.

24. Give your alter ego life and make a (sock) puppet.

25. If you’re a gamer and can code, create a game related to your illness ‚Äď I dream of playing an arcade game called ‚ÄúThe Angry Uterus.‚ÄĚ

26. Design a personal tattoo (which is in no way a commitment to get a tattoo).

27. Make some (awareness) jewellery.

28. Design a t-shirt and wear your message. You can never have13064520_10153945092096329_3814720925769389373_o too many awareness t-shirts! (Although my mother would disagree.)

29. Get pretty and expressive, experimenting with makeup and nail art. This fantastic body art is by Kiley Inman.

30. Download a meme generator and amuse yourself.

If you can afford it, pick a hobby/skill and invest in¬†some lessons. I’ve chosen to¬†prioritise a half an hour singing lesson every two weeks into my budget. I then record the lesson so I can continue to practice between classes. It is both empowering and encouraging to see the progress/development of that still over time.

Ask others to get involved; sometimes it’s nice just to relax with a friend and have fun together. Sometimes laughter is the best medicine. I’ve also had friends with artistic talent sit down and teach me for no cost.

The most important thing to remember is not to be a perfectionist. It’s not about the finished product; it’s about engaging with your illness, disease or disability in a creative way.  Short-term, being creative will help you relax, decrease tension and give you another way to communicate. The long-term benefits of developing this habit is often insight, acceptance and healing.

I’d love to hear from you!
Do you have anything to share?
Do you have anything to add the list?
Have you noticed the benefits of engaging creatively with your illness?