2020 was not what any of us expected. It hasn't exactly been a year for huge achievements or milestones, but more for being grateful for the small things, each other and surviving, as many have not been as fortunate. What the world has faced has undoubtedly challenged our perception of what is important, and changed the way we live. I believe we all truly learnt the value of health and human connection, and second to that the value of job security, travel and social events.
My 2020 has once again been filled with great introspection and learning - highs, lows, laughs, tears and so much more. So here is the year in review, highlights from January to December:
January kicked off with another hospital admission on the 9th for a UTI, resulting in another 3 day admission with referrals to immunology and infectious diseases to work on my resistances.
I was SO GRATEFUL to be given a Nurse Navigator at the hospital - someone who is able to coordinate between my specialist teams, help and support me. This year I have seen 6 additional specialists on top of my usual (2 additional in the pain team, dietician, immunology, infectious diseases and gastro surgery).
As February came around, my mother left the home we were 'share renting' together, to live more permanently in Pakistan. My beautiful friend Jasmine moved in, and it officially kicked off the era of 'living out of home', despite being equal 'housemates' with my mother since 2017.
I was proud to complete my studies in counselling and transpersonal therapy. My placement had been delayed due to a combination of factors; managing the business without break while my mother was overseas, being in and out of hospital, and having to find my own placement where I was able to practice my skills. I was grateful to have the opportunity to complete placement with the education team at South East Queensland Ronald McDonald House Charities (RMHC), as well as see clients in my own private practice.
In my time at RMHC, I was able to review and provide insights on the applications for the Charlie Bell Scholarship awards - a RMHC initiative to provide $5,000 scholarships for education to students with chronic illness and disability. I felt most grateful to be invited as a guest speaker to share my story, insights and path since school at the awards presentation to the scholarship recipients in late February.
These interactions and others birthed the concept of the Wellness Empowerment Movement (WEM) - that is constantly evolving alongside the needs chronic illness community. WEM aims to provide personal stories, insights and resources for those with chronic illness to be equiped to take responsibility for the direction of their healthcare, and empower us/them to advocate for themselves and others. It is a platform for those with chronic illness to know they are NOT ALONE, and are supported by peers. Due to my own trials and tribulations with my health, things have been delayed, however we are active on our social media platforms in the meantime!
On the 24th of February I had an endoscopy to assess my oesophageal (food pipe) function, as I was having greater difficulties with my swallowing and worsening reflux. I have had GORD (gastro-oesophageal reflux disease) since infancy, however it reached a stage where it was severely disrupting sleep and daily activities. They were able to find that I had what appeared to be Barrett's Oesophagus (pre-cancerous) cell changes over the past year. Considering my symptoms, they ordered further testing - a swallow study that I had in March showing no oesophageal peristalsis (contractions to move things down, indicating that I was only getting things down with gravity) and oesophageal manometry and acidity testing that were delayed due to COVID-19 despite being a category 1 (seen within 30 days).
Before everything started shutting down as a result of COVID, I was able to reunite with some of my Sunshine Coast Fashion Festival girls at a fashion show for International Women's Day at Rainbow Beach.
I also organised a photoshoot with some of our WEMbassadors (ambassadors) who have chronic illness for our WEM social media too - shot by John Pryke and Mary Hecker.
Shortly before going into self-isolation with my father up on the Sunshine Coast, I received a call at work from his neighbour informing me that he had been in a 'car accident'. I instantly went into panic. My mother and I have been the primary carers for my father since 2010 (when I was 11 years old) when he had a massive stroke that he was VERY lucky to survive. He had attempted to jumpstart the car but didn't get into the drivers seat in time before the car hurtled back down the driveway - the drivers door wiping dad out on the way through, and it slamming into a car driving past.
Fortunately, no one in the other car was injured, however dad's car was written off from the damage. The ambulance checked dad over, and apart from shock, bruises and skin torn off, he was okay. I raced up the coast and took him for brain scans to assess his capacity, however things seemed unchanged (still the same brain damage).
From then I began isolating with Dad to protect us both from the increasing threat of COVID, knowing that both of our compromised immune systems put us at great risk. It was in isolation that I worked from home, and began my Masters in Business Administration (dual major Entrepreneurship and Health Services Management) online due to campus closures (COVID again).
April was once again spent in self-isolation with Dad, with trips home to isolate in my place in Brisbane on the weekend as I truly felt I was having major carer burnout, and needed some time to nurture myself and my own health. I also had another UTI however this time I was given a high dose of an alternative oral antibiotic that was effective, and could completed the course at home.
In May I was so excited to unite my Resource Development Team for WEM on a Zoom call with members internationally and nationally, and discuss the future direction of the movement. It was also a great month, as my mum finally returned from Pakistan after 2 weeks hotel quarantine in Sydney!! With case numbers skyrocketing there, and international airports closed, it took weeks before she was able to get home on a special charter flight.
During this time I was still awaiting the further testing on my oesophagus to determine the treatment options, which resulted in me needing to be taken to the hospital by ambulance in May, after waking up from what felt like drowning and choking in my own blood stained stomach acid. After a range of antacids and medications, I was able to return home in the morning, with this incident being flagged with my surgical team.
Thankfully in June with COVID cases in Queensland being low/zero, elective surgery reopened and I was able to have the further testing. I went to a different hospital specialist unit for testing - where they fed two different tubes from nose to stomach to assess if there were any contractions and what the acidity was like. Once these reports were provided to my surgeons, they booked me for a Fundoplication surgery to wrap my stomach around the base of my food pipe to prevent reflux from coming back up.
During this month I had another presentation to emergency for severe nausea and vomiting with traces of blood.
A few days after my 22nd Birthday in July, things with my family business took a turn. As we assist international students to study in Australia and there was/is no international travel, times have been tough. We transitioned to JobKeeper once that became available, and are dreading the cut off if International students are still unable to return. Considering it is the 3rd largest industry behind mining exports, it continues to shock me that more has not been done to support this industry.
However, this pressure led to what can only be compared to a heist committed by criminals in our first established office in Pakistan. This resulted in hundreds of thousands of dollars loss for the business and most heartbreaking - loss of close relationships formed with former staff since late 2017 who were the ones committing the crimes. The damage and aftermath continues to this day, and unfortunately was not remedied by what we found to be a corrupt justice system in this instance. Truly devastating. However, being in a crisis is what I understand best, and this hurtled me out of my previous stressors and into 'putting out fires' mode.
July also brought massive opportunity. I had been trying to create systemic change as an individual, and wanted a broader platform where my experiences could have an impact to improve care. I was very fortunate to interview and be appointed to a Consumer Representative position on the Diversity Working Group at the Royal Brisbane and Womens Hospital (RBWH), and after a few weeks was appointed to the PREMS (Patient Reported Experience Measures) Pilot Steering Group. In addition to these two appointments, I was recruited to different focus groups within the months to follow.
As August came, it was time for my Fundoplication surgery. I was greatly anticipating (and quite nervous for once) for the surgery as I was hoping that it would increase my quality of life and help me sleep, as I was unable to sleep through most nights with the drowning and choking in acid. At some point, I may go into greater details of what unfolded during that admission (I have daily vlog footage), and the impact that had on my physical and emotional wellbeing. Unfortunately, after the first surgery I was unable to get any food or water into my stomach as the wrap was too tight.
After 10 days without oral intake and no nutrition except saline (salty water) drip, an oesophageal dilatation under anaesthetic and 2.5 days on the emergency surgery list, they re-operated to almost fully undo the first surgery. In this time I developed another UTI that was only detected and treated post-discharge, after multiple botched catheter insertion attempts. I lost 9kgs within those 10 days, and am still yo-yoing up and down 1-2kgs from this baseline, unable to put on any more.
Post surgery I began bringing up foam (saliva) that would build up in my oesophagus up to 25 times a day, and having excruciating pain in my left shoulder with all limited food and drink consumption until the stitches fully dissolved from my diaphragm, with the frequent regurgitation and some pain continuing long term.
Due to the timing and elongation of the hospital admission and recovery, I basically started (except week 1/2 content) my trimester for my MBA in week 7, and managed to pull together all of my assessments by the final due date of the trimester without needing out-of-study-period extensions. There was a lot of blood, sweat and tears put into achieving HDs within 4-5 weeks of discharge from hospital, while still processing the event and dealing with the physical ramifications.
By September, once I had my surgical review they confirmed a diagnosis of Gastroparesis (partial paralysis of the stomach creating issues with gastric emptying) as a result of confirmed damage to the Vagus Nerve from previous surgery.
My advocacy in September continued with being appointed to a working group for Julian's Key implementation - a great health passport tool for those with complex/chronic health conditions and disabilities to be rolled out at the RBWH. This tool is patient-controlled, free and available in print, PDF and app form, I would recommend checking it out. I was also appointed as a Consumer Representative for Health Consumers Queensland Youth Reference Group - a very exciting youth-focused project. To top that all off, I was very proud to have WEM featured in Designer Q Magazine that month.
A highlight of September was winning the Queensland Young Achiever of the Year First National Real Estate Leadership Award 2020. This Award acknowledges young people who set an example through their leadership and drive, paving the way for others to follow. You can see the nomination here!! Truly honoured, grateful, proud of the other finalists and very thankful to Ray Ellis and his team from First National Real Estate, Awards Australia, Seven News, B105 and all of the other sponsors. Thank you. This is so important for young people to be acknowledged and united.
In October I made a big transition from my original modelling agent to JR Management to be represented across Australia and Singapore. I am really excited about this huge step.
I created some more photoshoot magic with John Pryke and Mary Hecker - always an absolute pleasure working with these two, who have been by my side since day 1.
That month I was also featured on the cover of Bridge Magazine (Continence Foundation of Australia) with an article I wrote about the lessons my incontinence has taught me, another big step towards breaking down the stigma surrounding incontinence.
Unfortunately, my health was not the strongest throughout. After an appointment with the pain clinic I was sent down to Emergency for issues I have been having with health palpitations and high blood pressure. I was able to go home after a few hours, with a referral to cardiology.
November brought an additional endoscopy and swallow study. They thought they would dilate (stretch) my oesophagus but did not believe that it would bring any relief once they were in there. After consultation they booked me in to receive botox at the base of my oesophagus to try and get things to move through better, as the saliva build up and nausea were making it very difficult for me to eat. We also discussed the 'not if but when' nature of needing an oesophagectomy (removal of oesophagus/food pipe) and to be tube fed if I cannot keep my weight on, but we are hoping to delay that until my 30s or 40s.
I was able to advance my advocacy even further, being appointed as the consumer representative for the entire gynaecology department within the Womens and Newborn Services at the RBWH. If you have been a gynaecology patient at the RBWH, I would love to hear from you about your experiences.
In mid November I spoke as a Keynote at the virtual Physiotherapy and Exercise Science Emerging Research Conference hosted by Curtin University that was streamed internationally (a HUGE thank you to Peter and Emma for approaching me with this opportunity). My presentation: ‘Don’t just treat it, talk about it: A Consumer Perspective on Incontinence and Pelvic Health’ – discussed my experiences and the importance of having open conversations about these topics within the community to reduce stigma, as well as psychosocial discussions in a clinical setting to provide holistic support.
At the beginning of December my weight began to nosedive again, and the botox procedure was fast-tracked within a few days. I am so happy that it has slightly improved things, no matter how small. Within a few days of this I was invited to present at the Herston Health Precinct Research Symposium in Brisbane where I shared my insights into the benefits of engaging consumers in research – including the design process – to have better outcomes for patients and researchers alike.
Before Christmas I had my first meeting for my newest advocacy/consumer representative appointment, this time drawing on my experience as a carer with the Wellways National Youth Advisory Group for Carers Gateway. I am greatly anticipating a face to face national meeting in Brisbane in late January!
There has been so much in between these moments that have been so filled with love, and other moments so filled with heartache. It often feels like I am facing all the challenges alone, and only surrounded by people when celebrating the wins - so I truly appreciate those that have been by my side through thick and thin. The few people who understand my heart and speak the language of my soul; you are so rare, and I love you.
I trust 2021 will hold so much more than we can all hope for, as 2020 for so many of us has been more challenging than we could have ever imagined.
LOVE,
A xxx