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,

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!

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’t have to be the next Van Gough, Ansel Adams, Sylvia Plath, PewDiePie or Alicia Keys to be creative. I have compiled a list if ‘creative’ 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’m 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 ‘singing in the shower’ to the next level.

10. Pick up the musical instrument you haven’t 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 – I can never go past Vanessa Carlton’s 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 – if you don’t ‘do poetry’ 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 ‘Paralympic Sport’ – 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
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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 – I dream of playing an arcade game called “The Angry Uterus.”

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?

A Letter To The GP’s Who Never Let Me Give Up

Yesterday during my GP appointment, my (female) doctor said, “Alex! I saw you in the coffee shop earlier, and I noticed you’re looking very pretty today. Have you done something with your hair?” It’s safe to say she made my day!

I have many people who have supported me as I’ve learnt to adjust to life with chronic illness – family, friends and health professionals. I’ve seen multiple GP’s in my life and three have stood out for me, one from each of the cities I’ve lived in since I left high school. Their non-stop encouragement, compassion, and validation have helped me survive a series of unfortunate events.

Dear Dr. Sydney, Dr. Lismore and Dr. Brisbane,

Thank you for validating me when I felt stuck in your revolving office door. There have been periods where I’ve seen you monthly, fortnightly and weekly and you never made me felt guilty for taking your time or like a burden. You probably have no idea the impact you’ve had on my journey through chronic illness, but these are a few of the things I thank you for as you validated me as a person and my experience as your patient.

Thank you for acknowledging your limits as a General Practitioner and referring me to health professionals who have more training and expertise. You were never offended when I sought other opinions, and your humility meant I was able to get accurate diagnoses and try new treatments. You showed me that an effective support network had many people and was multi-disciplinary. [Dr. Sydney,] I was stunned when you wrote a thank you letter to my naturopath for her insight and test requests that led to my PCOS diagnosis.

Thank you for listening to me. I may have left your office feeling hopeless (due to the nature of the chronic illness) and in tears many times, but I never left feeling unheard, ignored, uncared for or let down.

Thank you for respecting my dignity as an adult who can make her own decisions. Thank you for not pushing me to attempt risky treatments I was not prepared to try and acknowledging the research I had done on my own. Many times I came into your office, not as Ailment Alex, but as Advocate Alex, requesting a specific referral, treatment or test. Sometimes I was way off, but your encouragement empowered me to continue as an advocate and to keep opening new doors.

Thank you for not treating me like a drug addict or another ‘fat person.’ You never hid your shock when I shared horror stories with other health professionals. You also exercised great wisdom and respect as we managed my medication increases and decreases.

Thank you for being my friend. I don’t mean this in the creepy, dependent, unhealthy, unprofessional kind of way. You shared my disappointment when treatments didn’t work and celebrated the small victories, usually with more enthusiasm than I. You were often the person I spent the most time with (other than my family), and because you were holistic in your approach, you treated me like a person, not a patient.

Thank you for being practical. You understood my personal restraints, particularly transport restrictions and financial hardship. When possible, you gave me samples, helped me access the cheapest and most convenient options and always bulk-billed. Your efforts meant I could afford my healthcare, try different treatments and see new specialists that were often helpful.

Thank you for letting me cry and empathising with my pain, sorrow, grief, despair and the unfairness of my situation. I appreciate every time you agreed that my situation was unfair, saw me as a whole person, told me I didn’t deserve this and apologised when you had run out of tissues.

Finally, each of you said something to me that has stuck with me.

Dr. Sydney, when you, acknowledging we shared the same faith, asked to pray for me, then and there, you reminded me that although I felt isolated and hopeless, I wasn’t alone, and there was hope.

Dr. Lismore, when I came to you because my suicidal ideations had returned, you said, “I won’t give up until we get you better” (and you didn’t), you showed me I wasn’t alone, and there was hope.

Dr. Brisbane, when shared my insecurities that I felt like a hypochondriac because of a string of infections, you told me to “never apologise for looking after yourself. You know your body. If something feels off, never hesitate to see me.” You, again, reminded me that I wasn’t alone, and there was hope.

So, to these wonderful GP’s, thank you for acknowledging your limitations as a human, while giving me the dignity and respect I deserve as one. Thank you for using your role to bring hope and healing to a patient who needed it as they learnt to understand and manage their chronic illnesses.

Many Thanks,

Your Grateful Patient.

If you live in Sydney, Brisbane or the Northern Rivers (NSW) and looking for a good GP, feel free to message me and I’ll pass on the names.

What ‘in Sickness and in Health’ Really Means

First published on The Mighty.

If you’re thinking about marriage – you may be engaged, talking about engagement or fanaticising about marrying that beautiful man. Whatever your status is, seriously ask yourself, are you really ready to say “I do.”

After writing a letter to my newly divorced self I realised, at 20 years old, my fiancé had no idea what he was committing to. When he looked into my eyes, shaking with nerves and excitement as he said “I do,” he actually didn’t understand what “in sickness and in health” meant.

I was pretty healthy! I was studying full time and had two jobs. Yes, he knew about my struggle with depression and had cared for me through many chest and sinus infections. Even though he knew all that when he put a ring on it, he was not prepared for Chronic Pain, Endometriosis and PCOS. Really, who is?

When we married in November 2010 we were both pretty healthy. Sadly, the chronic pain from endometriosis had well and truly set in during my January period. We had barely been married two months and his promise to love me in sickness and health was already being tested.

What does in sickness and in health mean?

Sure, you’re both healthy now. You can run, go for strolls on the beach, have a 10 pin bowling date, have painless sex and ready to stick by your partner for better and worse. But…

Are you willing to take an income hit when if they can’t work full time?

Are you willing to use days off to drive your partner to the doctors?

Are you willing to accept potential infertility?

Are you willing to see a marriage counsellor to help you process the grief and changes together?

Are you willing to see a sex therapist, even if it is super embarrassing and awkward?

Are you willing to deal with your grief?

Are you willing suck up your pride, seek your own support and see a counsellor yourself to help you accept, process and manage your own feelings of loss, disappointment, resentment, anger, bitterness and unfairness?

Are you willing to use your leave to help care for your partner if they need surgery?

Are you willing to watch the person you love the most in this world suffer physical and mental pain?

Are you willing to advocate for your partner when they have lost hope and when no one else will?

Are you willing to learn about the illness with your partner?

Are you willing to do ask your friends and family for support?

Are you willing to try new activities, ones that you can do together, things you wouldn’t have tried until your options were limited?

Are you going to stick around and choose to love that person every day until ‘death do us part,’ even if you hate the illness?

It is true that you never know how you will react in a situation until you’re in it. But if you can’t answer yes to many of these questions, maybe it’s something to think about.

 

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.

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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‘Destined’ to be Depressed

The Problem with Dysthymia (or Persistent/Chronic Depressive Disorder)

Dysthymia isn’t a word most people hear, even for those with a chronic depression diagnosis. According to the DSM-V, Dysthymia (or PDD/Persistent Depressive Disorder) is a mood disorder where you experience a low-level depression that lasts for at least two years.

If you’re like me, depression is normal. When I reached high school and started to make genuine friends, I was shocked to learn that deep down, most people didn’t want to die. I was amazed that most other people didn’t cringe at the thought of spending another 40, 50, 60 years stuck in your body, living with yourself. But not only was that not normal; it wasn’t healthy.

Depression runs in my family, on both sides, so I knew I had depression. Unfortunately 15 years ago, no one would diagnose or medicate a teenager, let alone a child. But as an adult, I’ve tried every treatment for depression under the sun and when nothing seems to ‘fix you,’ it’s easy to start thinking ‘maybe I was destined to be depressed.’

The problem with Dysthymia is…

 …that it is exhausting and relentless.

Medication and psychotherapy improve symptoms but doesn’t relieve them. You don’t get a chance to ‘relapse’ because you were never really in recovery. Hopelessness is hard to fight against when depression is relentless and its core is pessimism, sorrow, apathy, agitation, emptiness, lethargy and self-hatred. Compound that with never getting a break. That hobby you love can only placate you for a few hours (at the most). That movie will only distract you for minutes.

It feels like no matter how hard you try, there is no escape route. Imagine the person who annoys you the most, that person whose company only agitates and shatters you. Imagine never being able to get a minute away from that person, because it’s you.

Getting out of bed often feels like I’ve exerted the same amount of energy as you would at a gym session. The motivation to make healthy choices and maintain personal hygiene is arduous. The mental and emotional preparation needed to participate in activities just wipes me out. It never ends. It is exhausting.

…that it has nothing to do with life circumstances.

It was day 2 of my honeymoon when I texted my mum, “I love my job, I love what I am studying and I’ve just married the man I love, but I am still depressed.”

I was shocked as I sent it. Why can’t I just be ‘happy’?

When you have dysthymia, you can’t honestly answer ‘good’ when someone asks how you are, even if your circumstances are ‘good’ and stress-free. This only compounds the hopelessness, adds to the sadness and intensifies to the guilt. You can see the good things happening around you. You can appreciate the beautiful people in your life. You want to enjoy the things everyone else does… but you can’t. 

…the preference to die.

How ungrateful! You should be thankful you are alive. Life is a precious gift. There are plenty of people who have it worse. Your life isn’t that bad.

All of these things are true. Logically I understand it, but emotionally? I just can’t. I’m not suicidal; I won’t kill myself, nor do I have the plan to do so – but all I want is to escape myself and for the depression to end. If a bus ran over me, I’d be okay with it. If someone told me that I had 24 hours to live, I think I would dance. Often the thought of living another ten years is overwhelming, let alone 50 or 60.

Expressing these thoughts and feelings can mean future, legitimate suicidal ideations appear fake or a cry for attention (rather than genuine help). To say, “I wish I were dead,” is not a lie. Unfortunately, most people cannot distinguish genuinely suicidal thoughts from a less extreme preference to die.

…it’s so easy to hide.

When you’ve been depressed so long, it’s not only normal for you, but normal for those around you. People may not realise you’re depressed because that’s ‘just how you are,’ and it’s easier to be labelled a pessimist. If the symptoms are normal and treatments haven’t seemed to work, I think most people are less likely to seek extra help and support. If there appear to be no red flags to, well, flag – why bother, why waste my time and the doctors? It’s can be easier just to keep trotting away, as you have been, pretending everything is okay.

…the high rate of comorbidity.

 Due to the chronic nature of dysthymia, it rarely stays at that ‘lower-level’ – enter Double Depression. Depression (Major Depressive Disorder) is episodic – it has a beginning and an end. Many who receive effective treatment only experience depression once and others relapse, but it ends. I believe this is why, in Australia, only ten sessions with a psychologist is covered under Medicare. Ten is often enough.

…treatment is as long term as the disease.

I’ve been taking medication since 2008, and I am likely to be taking it until the day I die. I have seen a string of counsellors, psychologists, psychiatrists and other mental health professionals since 1998. I will probably have to for the rest of my life.

Because our brains have the ability to adapt constantly, Cognitive Behavioural Therapy (CBT) is one of the most effective forms of treatment for all forms of depression. CBT is about thought monitoring: consciously catching, challenging and changing your thoughts. Over time, the way your brain processes information changes, your feelings follow and eventually this becomes the norm – welcome to recovery.

Thought monitoring is exhausting, but for me, it never ends. Despite nearly 20 years of CBT, my brain hasn’t quite been able to make it natural. So, if I want to manage my mood and maintain some control, I have to CONSTANTLY assess and monitor my thoughts so that I can challenge them. It’s the only way not to spiral into a dark pit when stress rears its ugly head. It’s the only way I can try to shorten and minimise the frequency and intensity of an episode of Double Depression.

Not only this, but long term depression can also trigger other health issues, like anxiety, side-effects from medication, chronic pain, chronic fatigue, tension headaches, IBS, TMJD, addiction, obesity and insomnia. Persistent depression is rarely ‘just’ dysthymia.

The good news is that you’re not alone.

Unfortunately, mental illness is common – 1 in 5 Australians will experience a mental illness in any given year. The good news is, this means that awareness is increasing and mutual support is easier to find. It means that everyday stigma decreases and a treatment becomes more accessible. Find comfort in the fact that you are not alone.

With the right support networks – GP, psychiatrist, psychologist, family and friends – I have become more aware of my mood and have finally learnt to manage it. Double depression is decreasing, as the depressive episodes get shorter. I’m learning to practice self-compassion, rather than guilt. Every day, it gets a little bit easier to exercise and convert my unhelpful thoughts to helpful thoughts. Hope shouts a little louder than hopelessness. The deeper my relationship with God becomes, my capacity to fully trust Him and have genuine hope for complete healing increases.

Exercise, forcing yourself out of bed every day, taking your medication regularly, contributing to your community, meeting with friends, prayer, participating in therapy and leisure activities are just a few thing prescribed to treat depression. Be patient and persevere – healing and developing healthy habits takes time. Be honest about how you’re feeling and coping with life. Follow the guidance and advice of health care professionals. Find people who understand and will show you compassion when you can’t show it to yourself.

If I can learn to manage it, so can you.

5 Stages of Endo*

                                                                             *Not scientifically proven. 

‘Uterus.’ There, I said it! Uterus! Periods. Ovaries. Fallopian Tubes. Bleeding. Tampon. Rectum. Hormones. Bladder. Cervix. Menstruation. Vagina. Discharge. Pelvis. Pads. Endometriosis. 

Awkward.  

These words are often avoided. They’re not ‘kosher’ and they make people cringe. Slipping them into a conversation causes tension and awkward-turtles, but if I keep my mouth shut and stay silent, society remains ignorant.

For me, these ‘uncomfortable’ words are normal topics of conversation. Conversations that cost hundreds of dollars and occur during painful, exposing, vulnerable, demoralising and uncomfortable ‘internal examinations’ that make a pap smear feel like a stroll in the park. Conversations with a plethora of in-depth questions about the most intimate details of my life – sex, bowel movements, urination, contraception, pregnancy, PMS, weight, fractured relationships and mental illness… Oh, did I mention these ‘chats’ are with complete strangers? Unfortunately, when you’re chronically ill, second, third and even twelfth opinions are often necessary.

Ironically, I have found conversations about Jesus, faith, religion and politics are easier than talking about a disease that affects the reproductive organs of 1 in 10 females worldwide.

Stage 1: Faking it 

Courtesy of PCOS, acne sprouted when I was 11 and once puberty kicked in, my face resembled a pepperoni pizza. At 15 I started taking Roaccutane – a potent pharmaceutical to treat cystic acne. Falling pregnant while taking Roaccutane guarantees a deformed foetus, so the dermatologist refused to prescribe it unless I also took the pill (which never made sense as I wasn’t sexually active).

Within a few months, the chronic abdominal pain started. The result: x-rays, ultrasounds, specialists, painkillers, frequent school absences and a colonoscopy. Diagnosis: psycho-sematic pain. It was all in my head. Treatment: psychology and cease taking Roaccutane. I was a perfectionist with anxiety falling behind at school and an extrovert isolated from the world. Rumour was that Alex was “faking it” and it wasn’t long before I started to spiral into a dark, damp hole I couldn’t escape. I was in pain all the time and there was no physiological cause. I never finished the course of Roaccutane and I stopped taking the pill. A few months later the pain resolved, but ovulation and menstruation had became hell. No one suspected a gynaecological condition or that ‘the pill’ was the culprit.

Stage 2: Diagnostic Conundrum

Fast-forward 5 years: the pain returned less than three months after my wedding (and four months of hormonal contraception). I took over three months sick leave and deferred my third semester at college. Again: scans, ultrasounds, blood tests, specialists, painkillers, weight gain, isolation. Again: no answers. I was a ‘diagnostic conundrum.’  

Stage 3: Diagnosis

An ovarian cyst eventually showed up on an ultrasound, so I booked in for a cystectomy. After six months on the surgical waiting list the cyst resolved itself. Instead, I had a diagnostic laparoscopy (keyhole surgery of the pelvis) where the gyno found endometriosis, a tissue similar to the lining of the uterus found outside the womb. Turns out I also have PCOS. Unfortunately, treatment did not stop the pain, but I had a name! Oh, the relief and closure. A diagnosis meant I wasn’t crazy! 

There were legitimate medical reasons for the constant pain, chronic fatigue, cramping, nausea and bloating. I finally understood why I had persistent acne, headaches, heavy periods, skin tags, difficulty losing weight, erratic mood swings, a dodgy immune system and pain during urination, bowel movements and sex.

Stage 4: Grief

What followed was a three-year process of watching all I deeply valued in this world fall away. I lost control of body; my nervous system was overworked and my mind was dulled with painkillers. The depression worsened and my financial security vanished. I had to leave my amazing job and eventually my marriage completely dissolved. I left the life I had built in the city to return to my hometown, move into my Aunt’s granny flat and share a bed with my mum. (I actually have no idea how I would have survived without such an amazing family!)

I ceased being an independent adult. I was 24, divorced, obese, unemployed, severely depressed, unable to exercise or even stand for more than a few minutes, incapable of doing my own laundry (and most other housework), living on frozen meals, dropping and breaking my valuables, constantly losing stuff and sharing a bedroom with my mother. I was like a dependant child, living in a dark, damp pit with no exit plan. I had such regular appointment, my GP became like a best friend.

By society’s standards I was a complete failure, Darwinism says I should have died years ago. I spent five years grieving the death of my dreams, goals and hopes I had for my life because there is no cure for endometriosis

Stage 5: Acceptance and Healing

I never stopped fighting for my health. After ten years of symptoms and five and a half years of non-stop pain, by the grace of God, the severity of my symptoms decreased. 

It took:

  • permission and space to grieve,
  • three surgeries,
  • trialling Visanne,
  • thousands of dollars in (conventional and alternative) specialist fee’s,
  • a willingness and determination to try almost any treatment options
  • improving my mental health,
  • forming emotional and medical support teams,
  • being active in the endometriosis community and sisterhood, 
  • taking the opportunity to participate in the documentary “Endo & Us,”
  • engaging with endometriosis creatively by expressing myself through photography, art, music and writing (click here to hear a song I wrote),
  • 100% dedication to an intensive chronic pain program,
  • taking the initiative,ignoring ignorance, never giving up,
  • and finding faith, hope and acceptance to finally be ‘okay.’

Sure, I still feel uncomfortable, bloated and nauseous. I cramp regularly and remain tired and in pain 99% of the time. But my flare-ups are shorter, less intense and not as frequent because I no longer react emotionally to the symptoms. Acceptance has led to spiritual, emotional and physical healing. I can now do basic housework, cook, socialise and exercise. I have a fulfilling part-time job, started losing weight, travelled, stood in the middle of a mosh pit and started my Masters degree.

I smile and laugh now because through the pain, the fight, the sleepless nights, the isolation and rejection, the lies, the heartbreak and the suffering my faith has developed. God never ceases to sustain, challenge and strengthen me as I eagerly wait for my restored, New Creation body that will no longer be plagued by endometriosis, PCOS or depression. Chronic pain has helped me find tangible hope and now my faith is solely in God, His holy and never-changing character and His perfect plan.
It saddens me that ten years from the onset of symptoms to a diagnosis and recovery is common but it will only change when we ‘end the silence.’

So for the sake of 178 million women around the world, I will fight, advocate and educate for increases awareness, research and a cure. I will continue to engage in awkward conversations on behalf of other adolescent girls and adult women who are being told the same thing in 2016 – “there is nothing wrong with you. It’s all in your head.”

So, this is me – Alex. I have endometriosis, it doesn’t define me, but it has changed me and taught me to be bold. I had endo removed from my rectum and cervix. My uterus aches, my ovaries have cysts, my cervix cramps, urinating hurts and my period sucks.

Now your turn – go on! Say it, just once. I dare you. ‘yoo-ter-uhs’…

…see, it’s not that scary 😉

Side Note: Through all these stages, I’ve always been extremely grateful to have such a wonderful and supportive family, both earthly and spiritual. I praise God every day for Jesus sacrifice, the Fathers love and the Holy Spirit’s power to transform my heart and heal my body. I give thanks for some tangible hope as I eagerly await the perfect and restored body I’ll have in the New Creation. 

I’ll Endure Until I’m Cured

This is step six in the grow program: I’ll endure until I’m cured.

I will persevere and I will fight. When I feel I can no longer withstand the discomfort and pain I can turn to my sisters to give me strength until I can see a glimpse of hope again.

I can hold onto God’s promise that says one day I will be healed completely. I will have a beautiful, disease free body. So, even if there may be no cure (for me: endo, PCOS or depression) in my lifetime, I know one day I will be completely cured from all that hurts me today.