Five Years Ago, Today…

Five years ago today I woke up bright and early, headed to Bankstown Hospital. I waited in a small room with an elderly couple until the nurse called my name. I am tagged, weighed and dressed in a beautiful white gown, socks that didn’t cover my toes and what I can only describe as a cotton, blue shower cap. I confirmed by details and hopped into bed. I had been told not to take any painkillers when I woke up, so they checked my details a second time and gave me some IV-Panadol. Not long after they wanted to be really sure they had the right person and checked my details yet again before rolling me into the pre-op room.

Enter Gyno, “so, Alexandra, I see we are doing a cystectomy today.”
“Uh, no. The cyst resolved itself; you said you were doing an exploratory laparoscopy.”
He giggles “Oh, okay then,” as he looks up from his notes.

They confirm my identity one more time before the anaesthetist gently squeezes my hand, gives me the mask and asks me to count slowly down from ten.

10… 9… 8…


I woke myself up with my own screaming a few hours later. “Did they find anything?”

It turns out, they did. Here Annie will show you what the inside of my pelvis looked like before the Gyno removed the Endometriosis (versus a healthy one).

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Hi!

As I left the hospital a few hours later, walking in the hunched posture my body had become accustomed, a nurse said, “walk straight, you’re all fixed now.” I believed her.

Even though the surgery wasn’t a cure and it didn’t take away the pain, I was finally validated. I was no longer mystically causing myself physical pain with my mind. There was a reason. There was a disease. It was my diagnosis day.

Today marks my 5 year anniversary since I was diagnosed and look how far I have come since! Praise God!

So it with a healthy mix of sarcasm, cynicism, gratitude and hope that I say…

Happy Endoversary, Alex!

We’re All In This Together

I received some snail mail yesterday – an actual letter of the fun kind. It was such a joy to find it in my letter box, open and read it! A dear friend, a sister in Christ and chronic illness sent it from Sydney. We bonded during my gluten, dairy, and soy free diet trial; she was such an encouragement and had wealth of knowledge to make it a bit easier. When I opened the letter, I found “Chronic Illness Achievement” magnets. I was reminded that despite the pain, fatigue and headspins, I got out of bed, was kind and gentle with myself and I survived the day! It’s made this current, trifecta of a flare up just a little bit easier.

There are so many things about having an illness that is so hard, sucky and unfair. Yesterday I was reminded of one of the blessings – the community, solidarity, friendship and mutual support that can only come from shared experiences. It sucks that we have to go through the trails that we do, but at least we aren’t alone.

Sometimes I feel like I’m a member of some exclusive clubs:

When you can relate to people who also feel alone and misunderstood, no words can describe the relief and gratitude. While I was attending pain clinic, I made some beautiful friends whoes lives had been impacted in a similar way to me. One of the most significant and helpful parts of the program were these relationships. While I was in Lismore, I participated in a 12 step program where I found mutual support and understanding from others with mental illness. I made more more progress after 12 months of mutual help then I did with six years of one on one therapy. And last month I organised a met up with three other women who have Endo and living in Brisbane – we spent nearly 3 hours sharing our struggles and most of that time we were in laughter as we told our horror stories that no one else understands. Some of my closest friendships grew because we share pain, emotional and physical and had experienced the life-altering impacts it had on our lives.

I need to thank a zillion people for being on my support team – but this is my thank you to the many friends who have been able to encourage and support me as we have learnt to live with chronic illnesses. Thank you for being honest and vulnerable. Thank you for sharing and listening. Thank you for supporting me and letting me help you. Thank you for showing me I wasn’t alone when my feelings were telling me otherwise. Thank you for praying with me and for me. Thank you for your kind words and genuinely checking in when you were barely functioning yourself. Thank you for teaching me self-care and compassion. Thank you for pointing me to Jesus so that I could rely on God, rather than my weaknesses. Thank you for being a mirror so that I could see reality more clearly.

Remember, we are not alone and to believe that you are completely isolated is a lie from the enemy. You have me and have millions of others who, even though their individual experiences may be different, understand. They want to support you the way others have supported them and social media has made connecting and networking with people so much easier – especially the days you struggle to get out of bed!

My prayer is that you will find the courage, energy, and spoons needed to meet others who ‘get it and are also trying to manage their illnesses one step at a time. Feel free to send me a message – I’m an extrovert, so I love conversations and if I’m not well enough to chat today, I will tomorrow.

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…and even though we may not be able to physically dance like the wildcats, we’re all in this together.

To My Newly Separated Self After My Illness Led to Divorce

Writing this was emotional and cathartic. Not yet had the guts to post this on personal pages – maybe one day.

To My Newly Separated Self After My Illness Led to Divorce

Two and a half years later, I’ve written the letter I wish I could have read when my marriage ended because of my chronic illnesses.

To my newly separated self,

It’s over. It’s actually over. The person you loved the most has gone. Your best friend abandoned you. The person who made you a lifelong promise of commitment “for better and for worse… in sickness and in health” in front of your friends and family has walked away. No more cuddles, no more sweet texts, no more dinner dates… just — gone.

Yes, it is unfair, and it is scary. I know you’re heartbroken, hurting, ashamed and grieving. I can still remember feeling as if my heart was being ripped out through my stomach. I know you’re hurt, scared of judgment and being alone…

… but please give yourself space to grieve. You had already lost so much, your body, your mind, your dreams for the future and now your partner. Loss of any kind is difficult to deal with, so allow yourself to grieve. Cry, binge on Netflix, burn your photos, buy some new clothes, change your hair, eat liters of ice cream, absorb yourself in a book or visit your best mate — do whatever you need to do to process the reality that the relationship is over. The only wrong way to mourn is to deny yourself of the right and necessity to grieve.

Know that your spouse wasn’t rejecting you, they were trying to escape the illness. I don’t say this to justify the broken promises, nor devalue your pain. I say it to discourage self-blame, self-hate guilt and shame, because it is not your fault. You didn’t get to choose to be healthy, but your spouse chose not to love you unconditionally or honor their commitment.

Please don’t isolate yourself — you are not alone. Many relationships in which one partner has a chronic illness break down. It feels easier to stay in bed and not face the world, but there are people in your life who care about you and want to offer support. Yes, yes, some people will always be ignorant, but many will surprise you, and you can learn to ignore the ignorance. Besides, those who have dismissed your illness in the past may finally understand how it has infiltrated every part of your life.

Allow others to show you compassion and how valuable you are. It will help fight against and disprove the lies that you are unlovable, worthless, damaged goods or alone. It will reflect how resilient you have become. When people reach out, don’t send them away and when people feel far away, ask for support.

Learn to accept and forgive. Unfortunately, we live in a broken world inhabited with broken people that have broken relationships. This sad reality means forgiveness is necessary, unless you desire to grow bitter. The spiritual and emotional freedom that comes from forgiveness will help you accept your new life and grieve. Forgiveness, freedom and acceptance are far better than being consumed by hatred.

So don’t lose hope. Instead, share your pain, fears, tears, tissues, Netflix subscription, and tubs Ben and Jerry’s. Remember to say to yourself, “I have a restored relationship with the powerful creator of the universe, and his faith gives me tangible hope. I am loved and resilient. It’s OK to grieve. I can forgive and persevere.”

Besides, now that you’re single, you no longer have to consider someone else in most decisions you make or shave your legs every week. You can eat the food you want, spend more time with friends, choose the TV channel and work toward regaining your independence. 

Know that you have the strength to grieve your previous life and accept this new one. Keep trucking on.

With care, compassion, empathy and love,

Your divorced self.

P.S. I don’t recommend looking at wedding photos too much — it’s not a fun time!

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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To Those Who Say Chronically Ill People Are ‘So Lucky’ Not to Work Full-Time

For those who haven’t had the opportunity to read The Mighty blog site, I highly recommend it. They exist to shed light, break stigma, create awareness and build understanding about chronic physical and mental illnesses. They cover Endo, but also PCOS, IBS, IC, Anxiety and Depression which also come hand in hand with endo. Sometimes when our loved ones read something written by someone else (but it’s as if the person was mind-reading when they wrote it) it can have more impact on their understanding.

I’ve been able to write for them and it has also helped me process the struggle. I really recommend having a look, it’s extremely validating and encouraging!

To Those Who Say Chronically Ill People Are ‘So Lucky’ Not to Work Full-Time

The Why of Bloging

This post was originally posted as “The Why”  page on WordPress

Since I’ve started writing more regularly, I’ve been asking myself, Why?

Why Blog? Why share my life? Why talk about super personal stuff? Why do I want people to read my stories? Why publish my thoughts online for anyone to read? Why bother?

The writer of Ecclesiastes sums it up perfectly in verse two, “Meaningless! Meaningless!” says the Teacher.“Utterly meaningless! Everything is meaningless.”

Without God, everything is meaningless. Without a greater plan and purpose, my life is in vain. This truth has greater weight within the context of the suffering and pain I’ve experienced daily for over 15 years, courtesy of Severs Disease, Chronic Depression, Anxiety, PCOS, Endometriosis, Regional Complex Pain Syndrome and various forms/degrees of abuse. My goal in blogging is not to play the victim, nor is it to insight a pitiful ‘woe is Alex’ response – it is simply to help me comprehend and convey my reality – my life.

Surely, there is a purpose. Surely, these icky circumstances can be used for good. Surely, this pain isn’t going to end merely with just being eaten by worms. Surely there is something bigger at play. There just has to be.

One of my beautiful friends recently said to me, “although I don’t have the same beliefs, I truly believe you would be dead if it weren’t for your faith in God.” She is right. If this is all for nothing, if it is all in vain, why endure this pain any longer than I have to?

Faith.

Romans 8:28-30 And we know that for those who love God all things work together for good, for those who are called according to his purpose. For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many
brothers. 
And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified.

I believe this is not ‘it’. I believe in the ultimate glorification of Jesus, my Lord, and Saviour. I believe my creator can use any and all situations for good. I have hope, tangible hope that the choices I make today on earth have eternal consequences and hope that ‘this’ isn’t all there is. I eagerly look forward to the day my soul will rest with my creator, and I will be perfectly healed. There will be no more sickness, no more sadness, no more selfishness and ultimately, no more sin.

My fundamental goal in life is to use what God has given me to bring glory to Him. ‘What God has given me’ includes spiritual gifts and blessings, talents, passions, revelation, wisdom, and life experience. My desire is to use these as gifts as tools to help build God’s Kingdom, but it has taken a long time to see my life experience as a good thing.

I want to share my story because it’s a story of hope. In an individualistic society, we can be surrounded by hundreds of people and still feel alone. This feeling is often compounded when isolation increases due to chronic illness. I want you to know you are not alone. There are other people who ‘get it’ and you shouldn’t be afraid, to be honest. Most people live in ignorance, but if you can be encouraged to be truthful, there is a strong chance understanding can lead to empathy.

As Christians we are called to love – love God and love each other. God, throughout most of Biblical history, has told His people to show compassion and look after the sick and vulnerable. I truly believe that genuinely listening to someone evolves into compassionate understanding and awareness which then leads to supporting and loving that person.

This is the motivation to be as honest as I possibly can because I know I am not alone. I know too many women who want their horrible periods to be validated. I know too many people who isolate themselves due to depression. I know too many individuals who struggle to get out of bed because they’re in great pain. If you can understand someone’s illness even a smidgen more, you demonstrate love to them.

Imagine being able to tell someone ‘you matter to me because you matter to God’ by simply listening to them. Imagine being the first person to express ‘I believe your pain is real, I know you’re not faking it.’ Imagine being able to show people what Jesus is like by being more aware of how to support someone in a practical and helpful way. Unfortunately, we cannot read minds, which is why educating yourself and learning how people are affected by adversity can show true empathy, compassion, and love. I know when I hear someone mention an illness they have I want to find out as much information as I can. I feel like I can better support them if I understand them, even if it’s just a little bit.

2 Corinthians 12:9 – But he [The Lord] said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

I am weak. I am flawed. I have blemishes. I am far from perfect. I had the opportunity to have my blog, The Five Stages of Endometriosis shared by a few different groups. One of them was Endo Active, who, even after their edit left this part in, “I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. God has sustained, challenged and strengthened me. I praise Him every day for giving me His Spirit, Jesus sacrifice, and Gods love. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation.” Had I not openly shared my story and my life in such a raw and honest way, I would have not had the opportunity to proclaim Christ, my true hope. When I [admit my faults, my failings, my struggle and] decrease, He increases.

Endo Bloat

So, in the last 3 months I’ve lost 11kgs. The doctors have been telling me for years that losing weight would make me feel much better. In a way they were right, it does feel nice putting on clothes that are now too big. It’s nice looking at my body and seeing that it’s smaller… but it’s made me feel worse about my endo.

11kgs ago, sure, I’d feel nauseous and bloated, but now I can SEE the bloat and can feel how swollen it is when I push on my tummy. Wearing pants and a seatbelt makes it worse. I didn’t realise I could feel more uncomfortable. It is actually really distressing.

I think I would almost rather be fat.

You’re *so* Lucky

Have you ever had the ‘joy’ of experiencing a conversation similar to this on a Sunday afternoon?
“What time do you start work tomorrow?”
“Ummm, I don’t work on Mondays.”
“ahhh, you’re so lucky!”

I lost count of the number of times I’ve had similar conversations. I understand that for most people not having to work on a Monday would be a gift, a luxury. But I don’t work Mondays, nor Wednesdays, Thursdays or Saturdays. Even the days I do work are only half days. I know many people would love to work only three days a week, but not me.

Many chronic illnesses can cause chronic fatigue, pain, vertigo, nausea, migraines, weak bladder or bowel, overwhelming sadness, debilitating anxiety, low immunity and muscle weakness. On top of the symptoms there is often pharmaceutical side effects; drowsiness, memory loss, reduced cognitive ability, excessive sweating, insomnia, anxiety, nausea, trouble breathing and heart palpitations, just to name a few.

If these symptoms and side effects can impact one’s ability to complete the simplest, everyday tasks, how much more can it minimise one’s capacity to maintain employment. If you have severe, chronic back pain, both manual labor and sitting for extended periods of time are not possible. If you have muscle weakness, you lose your ability to lift and hold things. If you’re always tired, your concentration lapses and therefore, productivity reduces. If you’re symptoms are sporadic, you may feel fine at 7 am, but by the time you leave for work an hour later you simply can’t. You have to call in sick last minute.

Personally, if I work more much more than 15 hours a week, my ability to do housework, study, exercise, cook healthily, socialise and participate in leisure activities decreases dramatically. Even then, 15 hours of work does not provide the income needed to live in Australia. Imagine adding the costs of doctors visits, tests, alternate therapies and medications to an already stretched budget. I can’t begin to imagine what I’d do with a full-time income.

I can only dream of a day when I may be able to have sustainable full-time work. If you have the capacity to a maintain full-time job and have managed to be employed full-time (which isn’t easy in itself), *you* are the lucky one. My full-time job is staying healthy and looking after my body. I don’t get paid for that. There is no financial gain. Instead, my job success relies on hiring a team of people to help and support me. It’s not cheap!

So, next time you are tempted to tell someone who doesn’t work full-time that they’re lucky because they don’t have to go into the office tomorrow, reconsider. Yes, maybe they do have the best job in the world, but maybe, just maybe, they don’t feel lucky. Maybe they would do almost anything to switch bodies and jobs with you because you are the lucky one.