Another Endo Story

Another Endo-Story blog header.pngSo, it’s 10pm on a Tuesday night and I’ve just finished watching SBS’s Insight episode (watch it here) on Endometriosis. Less than five minutes in, my chest was tight, my mouth was dry and my head was racing.

Hearing stories from other women who have been dismissed, misunderstood and ignored for years sent me back to 2013/14, before I had learnt to manage my symptoms well. I had been experiencing level 6-7 pain every day for a few years now.

As I watched Insight, one memory jumped in front of me, waving its arms, demanding my attention. What better way to process this loud and intrusive memory than to share it by telling Another Endometriosis Story?

I was living in a granny flat with my mum, under my aunties house. My mum was out for the night, I had the place to myself. I decided to have a shower before going to bed. My body started to relax as the warm water was cascading down and I could smell the sweet fragrance of my strawberry body wash…

BAM. OUCH! FAR OUT!!!

I hit the shower floor as my pelvis was stung with a sharp, intense pain.

I’m not sure how long I lay curled up on the shower floor, the water now feeling like small bullets hitting my back before I was able to reach the tap to turn it off. Somehow, I managed to wrap myself in a towel and attempted to get into my bed – I limped about 5 steps before I collapsed to the floor again, wearing nothing but a towel.

My aunty and uncle were home upstairs. I cried out ‘help’ as I yelled in agony. Surely someone would hear me or come downstairs to use the laundry. Surely. This continued what felt like an eternity. No one was coming downstairs.

I finally noticed my phone on the floor, about 5 meters away from me. I curled into child’s pose, closed my eyes and did some deep breathing, preparing my body to be dragged across the floor with the little strength I had. I may have added carpet burn to the mix, but I had my phone. I called my aunties home number – my uncle answered, ran downstairs and yelled for my aunty. He phoned for an ambulance while she dressed me. Together they lifted me from the floor and manoeuvred me to the bed.

We waited until that glorious green whistle was in my hand and the methoxyflurane powder was in my lungs, numbing the pain (not completely, but enough). My aunty and I managed to explain my medical history, that I had Endometriosis and PCOS – but as is with many of us EndoSisters, that probably caused more harm than good. You know, those painful periods – suck it up. It’s just hysteria or hormones.

That night I lay in A&E being injected with morphine, crying and unable to sleep because the pain wouldn’t relinquish. Eventually, I insisted my aunty go home and get some rest. In her absence, the nurses tried to ignore me and any interaction I did have, I was labelled a liar, a drug addict and a drama queen. I was told that if I stopped crying I would experience pain relief. The crying stopped, the pain didn’t.

The sun eventually rose and I was beyond exhausted, completely drained. Surprise, Surprise – my blood tests showed nothing, I was a perfect bill of health. The registrar on duty and I briefly chatted before discharging me with some tramadol and a ‘good luck.’ No pain clinic referral, no gyno consult, no GP letter, no ultrasound – nothing. Just a painkiller that interacted dangerously with my other medications and a token pleasantry.

I wish I could say this is my only traumatic endo-pain-flare-up story, but it’s not. It wasn’t the first time and it’s definitely not the last. In Australia, we grow up learning that doctors and nurses are safe people and that hospital is a safe place to go when you’re not well. Sadly, healthcare professionals can sometimes be the worst perpetrators* in stories where women are demoralised, dehumanised, undermined, ignored and accused of lying about their pain.  Sadly, our hospitals are not trained and equipped to treat chronic pain ethically and effectively.  Sadly, hundreds of thousands (I feel like this is a conservative number) of women with genealogical disease and pelvic pain are treated this way.

Sister, you are not alone in your physical pain, your wounded heart or your endo-story. They estimate there are 176 million of us worldwide. 1 in 10 women is a LOT and every time the media shines a light on Endometriosis, the world becomes a little less ignorant and grows a little more compassionate. So, Sister, please continue to tell this story we share.

Friends, please listen to our stories and believe our pain is real and don’t compare any of us to another individual. If you don’t understand; ask questions, listen well and continue to learn about this silent epidemic – because 1 in 10 women have Endo. So, if you know 10 women, you know Endometriosis.

*I know this is a bold statement – there are some wonderful, empathetic, humble and knowledgeable ones out there. I have an amazing healthcare team around me and I am forever grateful for them.

 

Endo Warriors

Copy of Singleness Blog

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

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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.

Church, It’s About Time We Addressed the “Single” Elephant In The Room

Singleness BlogAhhh, 1 Corinthians 7 (especially verses 25-40), that section in Paul’s letter to the Corinthians that’s well known for its message that “singleness is a gift.” And, yes, singleness is a gift, I’ve just heard too many sermons that get to the application as if Paul has written;

“To all the single people in the house,

You’ve been given a gift! Because you don’t have a spouse to prioritise, or children to take care of – you have more time, energy and resources to invest in the gospel and active ministry. The Youth Group and Sunday School need volunteers and there is always a need for people to go an do overseas mission. You are a gift to the church.

Now, let’s pray.”

However, Paul isn’t directly addressing those who are unmarried and widowed. He is answering a question concerning those in the church with a ‘single’ status. Can this passage encourage, comfort and challenge single Christians? Yes! Because singleness is a gift both for the individual and the church. It has advantages (hello independence!) while also being difficult and lonely. It’s not always permanent (see “4 Things God Says to Singles”) and it’s not a curse… This post has a unique and specific purpose: to add to the application, addressing the church as a whole. It includes every Christian, no matter your relationship status, gender or age.

“To all the people who love Jesus and are in fellowship with other Jesus lovers,

Singleness is a gift from God – both for the individual and the church. Therefore, as a church, we need to look closely at our culture and the message it is sending because I think we are falling short of who God calls us to be as His people. We have fallen into some bad habits, unknowingly. We are unconsciously minimising and demoralising our brothers and sisters in Christ who are single: whether unmarried, divorced and widowed.

Too often marriage and the nuclear family is idolised – good things God has created for His glory have become glorified. This idolisation converts singleness from being a good thing God has created for His glory into something resented and disliked. It’s as if singleness is an annoying infection that won’t go away… until, a partner, the ‘cure’ comes along.

As a church, we have paid a heavy price for this idol. Too many Christians start dating non-believers, playing the ‘flirt to convert’ game. Others get married way too early, unprepared and for the wrong reasons, which can lead to ‘unhappy’ marriages that don’t glorify God and sometimes end in divorce.

Some examples of how this idolatry plays out in the culture of our churches (of which I too am guilty of) are:

* We say and hear statements like;
“God has someone special just for you.”
“Just wait on God’s timing.”
“God is preparing you to be the best husband/wife you can be.”
Someone will come along when you least expect it – just be patient.”
“I met my spouse at Beach Mission – you should join a team this year”
“There is someone out there for everyone.”
 and
How are you still single?

These statements assume that a) that everyone wants to be in a relationship, and b) that God’s plan for everyone includes marriage while propelling the lie that marriage is needed for a content and full life. It can also imply that singleness is a ‘limbo phase,’ that they’re doing something wrong or that if they had more faith the ‘god-fairy’ would have provided someone already.

* Suddenly investing time, energy, food and coffee into two individuals once they’ve coupled up. This can take many forms. It may be more frequent invites to socialise with other ‘coupled’ peers or an older couple suddenly showing interest in accountability and mentoring of new couples in the church. God desires people of all ages and life stages to fellowship together, as every individual has both things to teach and learn from others.

* Ministry peer-support groups (usually gender driven) are formed exclusively for married people to talk and pray about married life. While there is a place for sharing with others in a similar life-stage as you, the Bible isn’t so picky.

* Buying into the world’s idea of the wedding. We may all know it logically, but marriage is more than the wedding. The wedding itself is a celebration of the union of two people for life. Some people spend way too much money and spend way too much time organising one day, with an exclusive invite list. The second question after “how are you?” most engaged people are asked is, “how are the wedding plans going?” While it can be an exciting topic for discussion, it shouldn’t become the first and often only one. Are you more interested in someone’s daily walk with God, or their one day of celebration.

* Buying into the world’s idea of sex. #sorrynotsorry, but “we’re too tempted sexually and God wants us to get married” (gee, thanks 1 Cor. 7:9) is not a good foundation for marriage – it’s called self-control (thank you Proverbs 16:32, 25:28; Galatians 5:22-23; Titus 2:11-12; 2 Timothy 1:7; 2 Peter 1:5-7; oh, and this blog). Too often we watch movies, binge tv shows, read books, share videos and skim magazines that make us think about and desire sex more than our intimacy with God. Let’s not put sex on a pedestal either. Sure, it’s another good thing from God – but so is the cocoa bean.

* Buying into the world’s idea of dating. There is nothing wrong with dating – honestly, each to their own – no judgement here. However, advice like, “put yourself out there, pursue someone” is so unhelpful, as is “your standards are too high.” The only one you should pursue is God. He should be our first love, single or married and He sets the standards for marriage partners, not us.

So, Church, it’s time to step up and treat our single brothers and sisters like the precious gift (and family members) they are. Some practical things we can do to start are:

1. Stop the assumptions: not every unmarried, divorced or widowed person is discontent with the singleness and wants to be married.

2. Stop the suggestions: marriage isn’t our life goal – bringing glory to Jesus is. Stop praying for a husband or wife, instead pray for contentment, godliness, that Jesus would be glorified always and to become more ingrained in the church family.

3. Stop the labelling: we are more than a girlfriend, a boyfriend, a fiancé, a wife, a husband, a mother, a father, a divorcee, a widow or a single person. We are children of God – chosen, precious, forgiven and loved more than we will ever know in this life. Asking “Oh, you’re still single?” or “any guys/girls on the scene?” can suggest that their relationship status or a label is the core of their identity.

4. Stop being ignorant: this IS an issue and we need to openly and lovingly address and challenge it.

5. Start the inclusion: 

Think about where you sit at church. While it is important to participate in fellowship and teaching together, it’s okay to have weeks where you don’t sit next to each other… but #sorrynotsorry, you have to be the one to take the initiative and invite others to sit next to you because people will assume you and your spouse will be seated side by side.

Invite a single person over for a family dinner one night a week. All it takes is an extra cup of rice and a few more veggies to cater for an extra person when you’re already cooking for a family. I’m sure if you ask them to bring dessert they’d be more than happy to.

Organise social activities without your partner. While it’s important to do things as a couple, you’re still individuals and participating in things with others and without your spouse shows you’re a) not literally joined at the hip b) interested in having your own friendships and relationships.

Try evolving the idea of a “Married Men’s/Women’s” support or prayer to be a simple, “Men’s” or “Women’s” group. Single people can both benefit from your life experience and contribute to the fellowship of these groups more than most of us would actually believe. You can’t tell me that in a “Married” men’s/women’s fellowship group that 100% or even 85% of the conversation is exclusively marriage related.

Really, initiating or participating in any activity that focuses on our unity and what we have in common, that promotes genuine community and sense of church family and embraces our differences as a point of uniqueness, not a cause for exclusion. Please, please share you have other idea’s.

We are all sinners who struggle to have an undivided heart for God. There are hundreds and thousands of things that can distract us from living a life devoted to God – marriage and family are only two of them.

So, sister or brother in Christ, how are we going to challenge and encourage each other to truly live in undivided devotion to the Lord, regardless of relationship status?

What are you going to do to start transforming our church culture, to celebrate singleness as the gift it is, stop both the exclusivity and the idolising of marriage and the nuclear family?

Jesus, please help us to be a considerate church that focuses on our unity. Please help us to do better.”

As a divorcee who is getting married in a week, I ask my friends to keep me accountable (because I should and do know better) – to challenge me when I fail and join me when I try to be more inclusive and mindful. I am more than a divorcee or fiancé and I will be far more than a wife. My intrinsic value and identity is bound in my status as a human being, created by God and called His child – because I’m forgiven and redeemed by Jesus. Guess what? So is yours, so let’s live like it!

Ps. if you ask when I’m going to have kids, you may experience death by stare.

Thank you to all those who contributed their experiences and ideas to make this post as real, honest and challenging as possible.

Meet Saki

by Caz Morton

Meet my black, sassy brother in Christ! We have so much in common – we both love fashion, are black, love Jesus and have bodies of steel. Meet Saki (this story has been written with permission).

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As I was editing the above image, my mate looked over & said jokingly, “wow! Saki is a poser & full of sass. I love this guy!” And we do all love him. I can see how much God has grown him through the relationships he’s built in Kids EE. I can also see how God has protected his life, equipping him for a ministry to a niche of people who are often not reached.

I arrived in Fiji with a wall up – the road in Tonga was bumpy for personal reasons, but Saki flawed me. God unexpectantly put him in my path & I’m so grateful He did. We connected immediately with our love for fashion, and that’s without even sharing and connecting with the deepest parts of our Christian walk.

Saki has plenty of reasons to walk away from God & complain, considering what he has faced in life. I asked Saki about struggles and he didn’t hesitate as his eyes lit up while he shared how God had kept him alive. We bonded over shared, messy health experiences, in particular how people’s attitudes change when you something is physically wrong. Unlike Saki, mine is now invisible, but there was a time my injury was public – when I was in my back brace for 5 months. This caused relationships to change drastically. It was as if I had caught the black plague, apparently unapproachable. Or, as Saki said you get “those pity eyes” as the norm. When an accident occurs, it’s hard to see how it affects your family & friends. You know they want to help, but you have this underlying guilt of ‘I don’t want them to have to go through this or bare my burden’. Guilt: it’s an emotion Satan loves to vandalise and explore, however, it’s a reality you have to come to terms within your own walk. However, there is great power over darkness and shame when you have people who understand your unique situations.

Saki had bone cancer when he was 10. They amputated his leg, although, in hindsight, they could have saved his leg. This angered me so much, but Saki was quick to say “I wouldn’t change it, what God has taught me, I would never change. It’s given me opportunities I never would have had and helped me to see God in a different light.” He had cancer again 13 years ago but praise God for remission over a decade. He shared with me struggles with self-image, his purpose when he was younger and being picked on for being different. I wish my 15-year-old self was in Fiji when Saki was ten – I would have cartwheeled into the bullies face, held Saki’s hand & prayed the bullies away in Jesus name. But he didn’t need a protective sister, he has a protective Heavenly Father. Having those struggles forced Saki to trust God and fix his eyes on Jesus saving plans. He is clothed in the armour of God (Eph 6:10-18) & when adversity comes he’s equipped in multitudes. People better watch out!

Saki is also the eldest of 6 & has a heart for serving in kids ministry (another reason we connected). I think if he could, he would adopt half of India, as I would with Sri Lanka. I love how God has been equipping him for a huge ministry, meanwhile, he resides in Fiji. Please pray for opportunities to share his unique faith story. What made my heart bounce was whilst on mission is when he shared with our Kids group “I can’t sit around worrying when I’m alive. God has helped me survive every day to possibly help someone else in need who might be struggling the same way.” What Joy God brings in the life of my brother Saki, he’s touched my life on so many levels, he is all S.A.S.S. in a good way:

Saki:
Saved
Amputee
Survivor
Servant

God has protected us both in similar ways, the emotional scars are healing & both being restored (2 Cor 5). For now, will continue to survive in Jesus name.

 

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Meet The Writer: Caz Morton 

Adopted by Grace, adopted from Sri Lanka.
Past handstand queen,
Proud member of the fashion police.
Recovering spinal and sternum injuries.
Follow@jeanellen on Instagram,

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:

Self-Care Day!

Self care is so important & Henry agrees… so we are spending the morning at home, drinking Choc Mint tea from a beautiful pot and cup, watching Netflix and doing some art.

Never forget to practice self-compassion and look after yourself.

Happy Easter

Henry is wishing you a happy easter!!! As he celebrates Jesus rising from the dead, he is also thinking about his own resurrected body – and it’s pretty awesome!

Thank you Jesus for your sacrifice so we can have hope! Come Lord Jesus, come!

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.