Spoonie Tales: Enough

You know you live with chronic illness when you spend the evening convincing yourself that having a shower and washing the dishes today was enough.

It wasn’t a wasted day.
I’m not a waste of space.
I’m not lazy.
I did my best.
I’m not worthless.
It’s okay to rest.
Be kind to myself.
My worth is not based on what I do or do not do.
Today was enough.
I am enough.

Do I believe it yet?

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.

 

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.

Conversations With Healthy People #1: The Amusing, ‘Really?’

It’s days like today when I’m struggling to summon the energy to be a ‘functioning human being’ that I remember an honest and genuine conversation I had with one of my teenagers during Bible study a few months ago.

I recall this conversation to remind myself of God’s grace, strength and sustaining power that gets me through each day. It’s an encouragement to continue being honest about life, even when it’s painful and sucky. I must confess, it amuses me (greatly) and makes me giggle a little on the inside.

I also find comfort knowing that I can come back and read it whenever I need to.

We were discussing how God uses suffering to deepen our relationship with Him, better understand faith, build His Kingdom and bring Jesus glory. For the sake of application, I briefly mentioned that these truths give me hope, even though I am in pain every day…

…another interruption (but a welcomed one)…

“So, you’re really in pain?”
“Yes.”

“All the time?”
“Uh, huh.”

“You don’t look like you’re in pain.”
“I know.”

“Wait! You were in pain on Friday night?”
“Correct.”

“Are you saying that you’re actually in pain, right now?”
“You’ve got it.”

“…Like, now-now? Standing there?”
“Yup…”

and then he slumped back into his chair with a sympathetic bewilderment written on his face. I think he started to understand, which I am grateful for, even if it was just a little.

This wasn’t the first time I’ve had this conversation, and it probably won’t be the last. So, I’ll continue to embrace the small opportunities to encourage open and honest dialogue. Conversations that develop empathy and grace to spur one another on to rely on God and persevere in suffering for the sake of God’s kingdom.

2 Timothy 2:10 (NLT) “So I am willing to endure anything if it will bring salvation and eternal glory in Christ Jesus to those God has chosen.”

 

Speak Up

As long as we remain silent, society remains ignorant. We can empower others and ourselves by sharing truth in love! #speakup #behonest #endsilence #breakingstigma

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#speaktruth #love #mentalhealth #depression #chronicpain #endometriosis #endthesilence #chronicillness #awareness #jesus #truth #endthesilence

How To Support Someone With a Chronic Illness: Listen

If you love someone with a Chronic Illness, it’s easy to feel overwhelmed, confused and hopeless. What can you possibly do to help them? It can seem impossible, especially when it’s a struggle for the unwell person to understand and comprehend what would help his/herself.

Last month I had a few friends join me to watch a special screening of a documentary called “Endo What?” After the movie two of them asked, “what can I say to, or do for someone who tells me, ‘I have Endo?’ How can I support them?” I confess, hesitated before I could reply because everyone is different and has individual needs.

Even when I look at myself, there is a stark contrast; what I need today is very different to what I needed two, four and even eight years ago. The only way to find out what someone needs is to listen to him or her. You may find that listening and believing what you hear is more than enough.

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At the moment, I am pretty stable. I am managing the symptoms well and have reached an emotional state of acceptance. The most supportive act someone could do for me today is to listen to my rants. I want to create awareness and help others to empathize compassionately with the next ‘Endo Sister’ they meet. I want them to recognize the signs and symptoms, so if they know someone who is suffering, they won’t conclude that they’re just “faking it” and instead, encourage them to look into Endo themselves. If you know more than ten women, you know someone with Endo, and many remain suffering, in the dark, undiagnosed.

Alex in 2005 and early 2011 needed someone to listen to my experiencing and validate the pain, not just assume I was overreacting or faking it. In 2010, I couldn’t drive, cook or clean and those close to me quickly knew I needed help with those tasks.

Two to four years ago, Alex needed someone to listen and hug me as I cried. I needed people to hear about the pain and acknowledge the strength it took to get out of bed every day.

18- 24 months ago I needed someone to listen and see how hopeless and suicidal I was. Those who listened understood I was desperate. They knew I just needed to hear someone say, ‘I’m here for you, and we will keep trying different treatments until you get better.’

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By truly listening to someone you can begin to understand what is at the core of the sorrow and frustration, and thus offer better support. This is called “active listening.” By focusing on your friend, avoiding distractions, being non-judgmental, reflecting and clarifying what you’ve heard them say and asking open questions are a few simple active listening skills. Active listening is the beginning of exercising empathy and compassion.

Sometimes we need a hug. Sometimes we need to grieve, cry and vent. Sometimes we need a good distraction, and sometimes we need to laugh. Other times we need practical help, for example, by being a taxi service, chef or offer room service. Often we can’t verbalize or even identify our needs are, but if you listen to us, you can help us reflect on our foggy and disjointed thoughts so we can start to understand ourselves.

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I believe this applies to any Chronic Illness. I would give the same answer to someone who asked for advice on how to support someone with PCOS, Chronic Pain or Mental Illness. The only way you can begin to help someone genuinely and effectively is to listen first.

If you ask the right questions and pay attention to what the person is communicating you will probably find they’re been trying to tell you what they need for a very long time. Unfortunately, medication, pain and other symptoms can mince our words, which require a bit more attention and reflection to get to the bottom of what is being said.

You can’t just assume that because your friend Jane Doe is having one experience, your cousin, Jillian is having the same experience. We all have different symptoms, comforts, effective distraction methods and relievers. Our functionality is as different as the severity of symptoms. The one thing we all have in common is the need to be loved, connected, wanted, valued, cared for and supported.

So the next time you’re feeling confused or overwhelmed by a loved ones illness. Stop. Ask. Listen. Reflect. Repeat. If you genuinely hear what’s being said and clarify: you can’t really go wrong, and at the very least, they will feel valued and validated through listening.

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Already… but not yet!

The beauty when your devotion is exactly what you needed to read. When my body is sore, fighting infections & extremely fatigued and all I can manage to do lay down but can’t seem to fall asleep. So grateful for the reminder that I live in the era of “already… but not yet!” Every day I am alive I can sing God’s praises while I await for my new creation body! #endo #spoonie #faith #comelordjesus #patience #sleep #keeptruckingon #cartwheelsinheaven

Don’t be Imprisoned by the Here and Now

It’s Endo awareness month; so I thought I’d share what hope looks like for me. Like many of us with endo and other chronic illness, we often have more than one issue we have to deal with in our lives. The primary problem becomes compounded by other issues; compromised immune systems, mental illness, chronic pain and other diseases. I’ve had clinical depression for 15 years and am convinced that it’s the reason why the pelvic pain moved from “acute” and “chronic.” It wasn’t until I learnt to manage the depression that I was able to manage the chronic pain – it was a vicious cycle. I was part of a “Grow Group” which is a 12 step program for mental illness (like AA).

Over the next week I will share three quotes from the Grow Blue Book (or the program). These have been one strategy that has enabled me to avoid reacting emotionally to the physical symptoms I regularly experience. It’s enabled me to gain a sense of control over something I have no control over. Even though I am trapped in an endo-infested body, it no longer infects my mind and heart. I am free!

Don’t be imprisoned by the ‘here and now.’ Nothing is forever. I am strong. One day there could be a cure. One day you may try a new treatment that helps. One day you will meet someone who understands and takes you seriously. Just because it sucks today, doesn’t mean it will “always” this sucky.

We can have hope by focusing on “facts,” not just fluffly positivity. We can have hope because we have been beautifully and wonderfully made by the creator of the universe. We can have hope because we have a purpose in life. We can have hope because we made it through the days past. We can have hope because we made it through today. We can have hope because every day endo awareness increases. We can have hope because science and technology is constantly evolving and developing. We can have hope because we have each other and we ARE loved.

I have hope because the God who made me loves me, supports me, cares for me, provides for me, sustains me and promises me a place in His new creation. Jesus death and resurrection has given me assured hope that one day I will be given a new body that will never be corrupted from rebelling against God’s good and perfect plan. I can look forward to Jesus returning, when, I will one day know true freedom and will be eternally safe from sickness, sadness and sin.

For more info on Grow check them out: http://www.grow.org.au