Saying goodbye to 2018 was bittersweet. In mid-December, I added one (what I hope to be) last white, plastic wristband in my ‘at-capacity’ plastic ziplock bag, filled with wristbands from hospital admissions over the past two years. I have always had the idea that I would make some creative masterpiece with them like the Cullen’s in Twilight did with their hundreds of graduation caps. In 2019 I am giving up this artistic fantasy, replacing the wall-sized artwork for a humble A3 sheet of cardboard, and making the (wishful) new years resolution to stay out of hospital this year!
2017 was an incredibly rough year for my health and I could not imagine having another year as bad. Unfortunately, 2018 was almost worse. There were moments that I wasn’t sure I would make it through. From bowel issues to reproductive system issues, chronic debilitating pain to blacking out, viruses to drowning in reflux at nights that affected my lungs and breathing – some days I felt like giving up, surrendering to the label of ‘disabled’ and throwing all my hard work away.
What kept me going was the faith that these challenging experiences were for a positive reason, even if it is a simple as speaking to doctors in the emergency department about VACTERL so if they meet someone else like me, they have a better understanding. Funnily enough, my emergency doctor in December confessed he has TOF (tracheal-oesophageal fistula – TE in VACTERL) like I do!
Its hard to imagine in the same year I was down in Melbourne twice with the One in 5000 Foundation, over in Phoenix speaking at the Pull Thru Network conference, in Hong Kong with P, writing and launching my book ‘Behind the Smile’, cover story in the Bridge (Continence Foundation of Australia) magazine, attending the National Youth Health Conference on the Gold Coast, beginning my dream course in Transpersonal Therapy (holistic counselling) and SO. MUCH. MORE.
2018 was a year of extremes which makes it hard to beat. It encouraged me to set big goals for 2019 – I wanted to have at least 4 speaking engagements (motivational & medical, sharing my story to improve quality of life for others with chronic illness) and BE WELL so I could actually do the speaking engagements.
I would like to think that I am well on my way to achieving my goals. Despite only being just over 2 weeks in to 2019, and hoping I don’t jinx myself when saying this, I am the healthiest I have been in longer than I can remember. I have been able to do high intensity cardio workouts at the gym, weight training and strength and conditioning classes. At the beginning, and still at times now, it is a huge push to get the energy in my body to exercise in between periods of exhaustion, heart palpitations, dizziness and nausea. Despite this I have managed to build strength and confidence in my body’s physical ability that I could not have imagine having just a few short months ago.
By the 6th of January I received communication that locked in 2 more speaking engagements for the year, making it 4 in total confirmed (2 in Brisbane and 2 overseas). I am feeling very reassured that 2019 will be an incredible year.
Another great initiative for January is VACTERL Awareness Month, and I have loved seeing my new friends that I have met through Facebook support groups posting about the condition and raising more much needed awareness. I wish I would have been able to witness this when I was an introverted tween unaware of others similar to me.
I had always thought VACTERL was something you survive or were born with; however it is something you live with. Even though my mind is often elsewhere, it is a condition that affects me daily. I am looking forward to sharing more about my journey with VACTERL in good time, however at the moment the book will have to do!!
In 10 days, I am off to Pakistan for the 3rd International Conference at Shalamar Medical College to present in the Obstetrics and Gynaecology section as well as do more Business Development and student interviews for our International Education Agency office based in Gujranwala. I can’t wait to share all the details of this trip with you when I am back on Australian soil!