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?

Self Compassion Henry

Henry has learnt how to be an expert at self compassion; choosing to ignoring the internal and external critics and instead, showing himself kindness, grace and acceptance.

We are constantly being compared and comparing ourselves to others. We see our sufferings as weakness. We see mistakes as failures and our illnesses as brokenness. We are constantly believing we are not good enough. I call bull-crap. They’re LIES! All lies.

To endure suffering is strength, to feel emotions makes us human, to persevere makes us strong and to measure ourselves up to no one but ourselves is freedom. The reality is that crap that is out of our control happens all the time. We all have bad, hard, painful and unbearable seasons in life. So instead of beating yourself up (or allowing others to do it for you), remind yourself; you’re doing the best you can, emotions are okay, you’re not perfect (and that’s not only alright, but what makes you human) and that you’re pretty, freaking amazing.

Begin practicing self compassion by putting your hand over your heart and saying to yourself, “may I know kindness. May I know grace. May I know happiness. May I be at peace. May I be at rest. May I know love. May I know empathy. May I show myself compassion.” Or “I am suffering. I am being kind to myself and giving myself permission to feel whatever emotions I am experiencing.

Be like Henry, learn the skill of self compassion. Be kind to yourself and stop beating yourself up! Self-compassion has been a life changing skill for Henry as he manages depression and FND.


Spiritual reflection

For those who believe in God, remember he is a compassionate God, who continually shows compassion to his people.

Is. 49:3 – Shout for joy, you heavens; rejoice, you earth; burst into song, you mountains! For the LORD comforts his people and will have compassion on his afflicted ones.

Jesus is the perfect example of this… oh, and we are also made in His image and are called to imitate His character.

Col. 3:12 – Therefore, as God’s chosen people, holy and dearly loved, clothe yourselves with compassion, kindness, humility, gentleness and patience.

So, let’s follow God and show compassion to everyone, including ourselves.


Some more information/resources on the concept of self-compassion:

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

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

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

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

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

…another interruption (but a welcomed one)…

“So, you’re really in pain?”
“Yes.”

“All the time?”
“Uh, huh.”

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

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

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

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

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

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

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

 

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.

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

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.