Self-Compassion

Compassion is to “suffer with” someone; showing kindness, empathy and understanding. Self-Compassion is when we extend that same kindness & empathy to ourselves when we are suffering. It is acknowledging that “this is really hard right now” and giving yourself permission to feel & seek comfort.

One way that I practice self-compassion in the midst of illness & suffering is to take some slow, deep breaths and say to myself,

“May I know peace,

May I know love,

May I know joy,

May I know grace,

May I know forgiveness,

May I know acceptance.”

All these mercies, God lavishes upon us through the love of Jesus. So, when showing kindness to myself seems impossible, I can remember how God looks at me and my suffering. I accept His compassion and extend it to myself. As a result, it can lower distress and increase my emotional well-being.

Why don’t you give it a go today?

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.

 

Meet Henry

Meet Henry.

I created him at an Access Arts workshop. He has a depressive disorder & FND. He also loves pink flowers, art, the theatre, chocolate, going on adventures and talking about uncomfortable but important issues.

Keep an eye out for his fun adventures – he’s just taken a trip to space to spread awareness & break stigma about mental illness across the galaxy.

Six Hidden Realities of Living with Chronic Pelvic Pain

First, a warning without apology: this is a TMI post, discussing six hidden and very uncomfortable aspects of the pelvic pain experience.

No one likes pain and no one can begin to comprehend the experience of chronic pain until you’ve been hit with it. It’s uncomfortable, frustrating, incurable, exhausting and life altering. The chronic pain train also drags behind it carriages filled with medication side effects, fatigue, painsomnia, specialist visits, unemployment, disability, isolation, poverty and mental illness.

But chronic pelvic pain, by its very nature and location, adds a new dimension of humiliation, shame, violation and stigma. Pelvic Pain can be caused by conditions such as Endometriosis, Adenomyosis, fibroids, scar tissue, PCOS, Ulcerative Colitis, miscarriage or ectopic pregnancy, Vestibulitis, Vaginismus, Vulvodynia, prolapse and poorly executed episiotomy stitches (yeah, there are a lot of reasons, and this isn’t an exhaustive list). In Australia, approximately 1 in 4 women between the ages of 16 and 24 have a long-term pelvic condition, while 1 in 12 men exhibit pelvic pain in the absence of a medical condition. So, in light of Pelvic Pain Awareness Month, here is a list of ‘hidden’ realities for women (and I’m sure men can relate too) that come with having chronic pelvic pain.

1. Your “Private Parts” Don’t Feel so Private

I don’t know any woman who likes getting a Pap-Smear or internal ultrasound; it’s awkward, uncomfortable and makes you feel vulnerable – but most of the time you have to do it if you want to maintain your good physical health. When going to the doctor with a pelvic pain complaint, they tend to examine the site of pain, some of this can happen by pressing on the abdomen, but a lot of it has to happen through an internal examination – yup, someone’s fingers poking and prodding in an already sore and tender vagina. Something which is supposed to be personal and private can suddenly gain a large audience in a small amount of time.

It was a sobering thought when I realised I have only had one sexual partner, yet I’ve lost count of the number of people (well, health professionals) who have put their fingers inside of me (charming, I know). 

2. Taboo

It’s fairly simple to explain that, “my knee is killing me because I’ve done my ACL,” “I have to stretch regularly because I have a slipped disk” or ”my left side is sore from a hip replacement.” Good luck trying to tell someone your cervix is cramping, that you have a stabbing pain stemming from your vagina, or that sharp pains are radiating from your clitoris without coming across crude, rude and totally inappropriate.

It’s not kosher to talk about your genitals, reproductive organs and sexual health. People don’t want to say the words and others want to hear them even less. It’s just too taboo. The problem is, when you bow down to stigma and stay silent, important issues go unspoken, unnecessary shame is projected and necessary medical treatment does unsought – and this is not okay. Everyone should be encouraged to seek medical advice for any persistent pain. Everyone should be given the basic human right of being heard when communicating their pain experience to others.

3. It Goes Undiagnosed and it’s Extremely Hard (and uncomfortable) to Treat

Referring back to the female reproductive system being a ‘taboo’ subject, I believe this is one of the reasons medical research in this area is lagging and why many GP’s are unaware of pelvic pain causing conditions. It’s also the reason why many suffer in silence, putting off seeking medical help and making the epidemic appear less severe than what it is.

But when someone finally decides to seek a diagnosis and treatment, it’s not a matter of having a blood test. The first step is usually an internal examination which is painful physically and can make one emotionally vulnerable. This can be true for teenagers, people who aren’t sexually active and especially true for those who have experienced sexual abuse/trauma. Treating the pelvic floor can be even harder for men, as the only way to directly and internally examine and treat a male with pelvic floor pain is through the anus.

Conditions like Endometriosis, Adenomyosis, fibroids and scar tissue find their most accurate diagnosis and effective treatment in surgery. For these and many more reasons, both men and women can spend years going from doctor to doctor, desperate for a diagnosis.

When you finally have a diagnosis, treatment can feel just as difficult, inconvenient, painful, distressing and violating. Once a medical condition has been treated, there is often residual muscle tension and nerves can become over sensitised to pain signals, which results in a Chronic Pain Syndrome in the pelvic region. The best treatment option I’ve found to reduce muscle tension, spasms and desensitise the nerves in the pelvis is seeing a specialised pelvic physiotherapy. Treatment from a Pelvic PT can include a pelvic remedial massage, the use of Vaginal Dilators and internal TENS unit). I have recently begun researching pelvic botox injections, and it seems to be having positive results.

My point is, managing any chronic illness and pain is difficult but trying to diagnose and treat pain in the pelvis has it’s own ‘special’ difficulties and frustrations.

4. Sex: a Painful Chore

Sex is meant to be pleasurable, bringing two people closer together physically, emotionally and relationally. However, it’s hard to enjoy sex, reaping its benefits in a relationship when it exacerbates pain. Some people experience pain during penetration due to a tight pelvic floor. For other women, any kind of sexual arousal and activity can cause a great deal of pain too. Others experience orgasms that, instead of bringing euphoria and a physical release that relaxes the body, turns each nerve ending of the pleasure centre into a vicious postman, delivering a package of pain to the rest of your body. In relation to women, the clitoris has over 8,000 sensory nerve endings (twice as many as men) which can affect up to 15,000 more nerve endings in the pelvic area. That means the pelvis is already a very sensitive area for women and when pain is involved, all those nerve endings act like speakers in a radio, elevating the sound of pain signals 

Bottomline, Pelvic Pain can make it hard to find any pleasure in sex at all – and that’s not fun at all!

5. It’s Rarely Localised

The pelvic floor is connected to muscles and ligaments that attach to the hips, groin, thighs, buttock and lower back. Therefore, pelvic pain is usually accompanied by pain in these areas. Sitting or lying in a position that alleviates pain from the pelvis usually can increase pain somewhere else in the body.

Pelvic pain can also have an impact on bladder and bowel functions. Irritable Bowel Syndrome and Internal Cystitis also piggyback on other conditions I’ve mentioned above. 

When a girl’s gotta go, she’s gotta go! If my bladder is full, pain increases. Many Pelvic Pain causing conditions results in painful urination, frequent UTI’s and incontinence – the embarrassment just keeps on keeping on. Until a few years ago, going to the toilet was agonising because I had a lump of scar tissue between my cervix and rectum. And the longer I left it, the worse it got, so I avoided drinking fluids and was constantly dehydrated. I still have times when I experience sharp bladder pain, so on occasions, I use the disabled toilets – it’s not because I’m rude, lazy or inconsiderate – it’s because I actually need to use the bathroom ASAP.

6. It’s Expensive

If a GP doesn’t have the expertise to properly diagnose and treat you, referrals are necessary for proper care. You can’t just see a general gynaecologist, you need someone who specialises in your medical condition. You can’t just see a physiotherapist, you have to see a physio who has specialised in treating the pelvic floor. If pelvic pain impacts your sexual relationships, seeing a relationship counsellor who has experience in sex therapy can also be an expensive necessity for the longevity of the relationship. Medical appointments are expensive, specialists are even more so.

Yeah… so, please remember that vagina, clitoris and anus aren’t ‘naughty words,’ they’re just nouns describing body parts that 50% & 100% of the population have.

If you are experiencing pelvic pain, you’re not alone, there are others who understand the emotional toll it takes. I hope you can find safe people with whom you can be vulnerable and speak honestly about your struggles and frustrations.

Haven’t got Pelvic Pain? Be a safe person for someone who does. I hope that when you meet people who have chronic pain you are kind and compassionate… and next time you speak with someone who has pelvic pain, I hope you can empathise with the extra burden it carries. We already struggle daily with shame, taboo and awkward-turtles that come with Pelvic Pain, please, be a legend, listen with an open mind, don’t judge, empathise and be kind.

Have I missed anything? Please share and contribute to the discussion if I have!

If you’d like more information on living with pelvic pain, here are a few websites with helpful information:
Pelvic Pain Foundation of Austalia
Pelvic Pain SA
Australian Pain Management Association
International Pelvic Pain Society

8 Strategies To Get You Out Of The House When You’re Depressed

One of my strategies for managing chronic depression is getting out of the house every day. When I’m having an episode, most days I open my eyes, sigh with frustration and then begin the battle of my inner dialogue…

“Oh, another day. Time to get out o…”

“… close your eyes and stay in bed – just ten more minutes. Feel how tired you are!”

10 minutes later

“Okay, now I really have to get out of be…”

“…staying in bed won’t hurt anyone. You’ve had a busy few days. Besides, nothing bad can happen if you stay here in your comfortable, warm bed.”

“But, but I don’t want to waste the day…”

… and it continues. I am so glad that after years of unhealthily late sleep-in’s and ridiculously late nights, I’ve learnt;

a) that getting out of bed, despite my feelings is beneficial to my mental health, and

b) I can put strategies in place to make getting out of bed and out of the house every day possible.

So, here are a few strategies:

1. I acknowledge I am blessed to have a part-time job that I love, so three days a week I am obliged to get out of the house, and it has made a massive difference to my mental health. Don’t have a job or can’t be employed? Try volunteering; it’s commitment without the pressure. Before I was well enough to have paid employment, I volunteered at a local kids club, at church and for a mutual-help support group.

2. Organise to have a tea/coffee at a cute cafe least once a week with a ‘no pressure’ friend.

3. Spread out doctors, specialist and support appointments so they are on different days.

4. Access your local community centre or mental health support service. There are plenty of organisations funded by the government who organise activities (e.g. choirs, art lessons, computer tutorials, community gardens and tours) and mutual support groups for people with mental or physical illnesses.

5. Don’t do a massive grocery shop, rather, get what I need for a day or two. This forces you to go out and get a few groceries 3-4 days a week. This has the added benefit of cooking with/eating fresh fruit, veggies and meat.

6. Make bookings! I love going to the theatre and the cinema. Booking tickets in advance can force you out of the house, lest you waste good money on something fun.13987851_1063897257012450_1674396231_o

7. Make a list of all the things you enjoy doing when my mental health is good and give a copy to those in your support network. It can often be obsolete to say, ‘do something you enjoy’ to a depressed person as a symptom of depression is that you can’t think of something you could enjoy. This is where my list comes in handy, it reminds me (and others) of the activities that can get me out of the house/bed and will improve my mood – even if it’s a smidgen, it’s worth it.

8. Give yourself credit where credit is due and don’t be hard on yourself when you do stay in bed or the house all day. Learning to manage mental illness is a long learning process. Write-off a bad day and have an early night because tomorrow is a new day.

I’ll be the first to admit that balancing mental health strategies with physical illnesses can make this harder; for example, I’ve had non-stop dizziness for five days and can’t drive, leave the house or operate machinery (in this case some appliances/hot stovetop).

For these sick or flare-up days, my goal is to get out of bed, brush my teeth and eat my meals or watch Netflix while sitting in the sun. If I can add a shower, play with some pastels, paint, read, welcome a visitor, or walk to the mailbox, it’s a productive day.

Then when I get better, or my flare up ends, I’ll start leaving the house again.

What helps you get out of the house when you body is telling you otherwise?

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
limitations.535131_752938168174916_8494518392625972808_n

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

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

25. If you’re a gamer and can code, create a game related to your illness – 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?

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.

 

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).

Annie and 1st Endo (1)

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.