Category: Blog

What a year 2020 has been! COVID-19 has, without a doubt, thrown a spanner in our lives and left us scrambling trying to adapt to a “new normal.” We’ve seen this impact our team at Beta Change in numerous ways too – from sudden change in workload, being stranded away from our loved ones, to working from home with kids, the Beta Change team have had to physically and mentally adapt to life during COVID. At our last meeting, our team discussed how COVID has impacted us and here are some of our thoughts on it from where we are. 

What’s Happening Where We Live?

Ashley lives in Melbourne, Australia where they are currently in Stage 4 lockdown. Some restrictions in place include travelling within a 5km radius of their current residence for essential services once a day, one hour limitations on outdoor exercise and mandatory face coverings when leaving the home. At the time of publication, only the state of Victoria has Stage 3 or 4 restrictions in place. 

Katie lives in New York, in the U.S. where regulations also vary across state and federal levels, which makes it important to keep tabs on the travel restrictions and data for each state. Everyone wears masks, especially in densely populated areas. Big events like weddings are getting cancelled or rescheduled for Zoom, so it’s been hard to accept that things have to be done differently than planned.

Pei Yan lives in Singapore, where they are currently in Phase Two of Circuit Breaker. This means that most businesses can operate with Safe Management Measure in place. Full reopening of schools had started at the beginning of June, with adjustments made to the current school term. Currently, it is still mandatory to wear a mask once you step out of your house.

Stephanie lives in Perth, Western Australia where life seems to be almost back to normal. Many restrictions have eased allowing for businesses to operate with a 2 square metre rule in place; stadiums and large events can operate at half capacity. However, state and international borders remain closed, meaning all non-essential travellers must quarantine for 14 days. 

Fi lives in Geelong, Australia where they currently have stage three restrictions, which means staying at home except for exercise, essential shopping or work. Like all the rest of Victoria, wearing a mask is mandatory. School children have also returned to remote learning after a brief period back at school.

How has COVID impacted you?

Ashley: Since March, I’ve been working from home, which has its pros and cons. While I save the effort on the two hour round trip travel time, I really do miss the bustling workplace environment and corridor conversations with colleagues. The hardest part has been not being able to see my family during this time as we’re quite close. Thankfully we’ve got video calls! 

Katie: I orchestrated a remote move while sheltering in place. The transition to working and attending graduate school remotely has also been quite smooth. However, there’s a strange phenomenon of time feeling like it’s passing by both quickly and slowly at once.

Pei Yan: All schools went into a full home-based learning routine early April. As a teacher, it has been a steep learning curve for us to pick up skills needed to conduct synchronous or asynchronous online lessons to students. I have never sat in front of my computer for such long durations before. It was also difficult to be working from home with other family members doing the same as well. Right now, many are out and about and life has partially resumed, but we know we will not be able to return to how it used to be before COVID for a while.

Stephanie: This pandemic separated me from my fiance for 5 months. When restrictions started in March, I feared being isolated from my friends and family. And with Giles’ fly-in-fly-out roster we couldn’t risk him bringing COVID into the house where I would have been working. I travelled to Hobart, Tasmania to ‘see out’ the pandemic with the support of my family. I have been lucky to have continued working from home surrounded with support, and get to holiday within Tasmania again; I’m now a week into my 2 week quarantine after arriving back in Perth and I can’t wait to see my man! 

Fi: We are currently in our second round of remote learning. My son is in grade 1, thus balancing work and home schooling has been interesting to say the least. Though it has been challenging, I have loved the opportunity to see how he learns and assist him to be the best learner he can be. The most challenging aspect has been being separated from my parents and trying to explain to our son this is only for a short time and we will be together again soon.

As a nurse we now have to wear safety glasses and face shields for all clinical contact. This has had its challenges, especially in engaging with patients. Since March, I have been doing a mixture of Telehealth appointments and face to face in the hospital. I could never have imagined doing a pump or CGM start via Telehealth but this has now become the norm. Surprisingly it works well and I have loved being challenged to support and educate people living with diabetes in a different manner. 

How has COVID impacted your diabetes management?

Ashley: The biggest impact COVID has had on my diabetes management has been my exercise routine and being more sedentary. With gyms closed, I’ve had to adapt to home workouts, which worked out well at the start until the motivation waned away. 

Most of my health appointments have also been moved to telehealth with a few exceptions. It’s been interesting to see the COVID precautions step up over time and its impact on healthcare staff. There’s been a heightened sense of anxiety and stress from staff, which can make appointments a bit more stressful from a patient perspective. 

Katie: It’s been hard to adjust to having less movement built into my day – normally I’d hit 10,000 steps without even trying. Now, without a commute, I need to be more conscious of how much I need to take a break, get up, and move. 

Cooking every meal has been getting harder as time goes on, so takeout dinners have been a real treat! 

Pei Yan: When the circuit breaker was imposed, all of my aikido training sessions were suspended and I stayed seated at my computer desk most of the time everyday. My eating habits also changed. While I enjoyed deciding what to have for each lunch, as time went by, it got more difficult to think of a decent meal to cook and choices became slightly more repetitive and boring. Once in a while I ordered food delivery when I felt I needed a change in food choice. All of this impacted my weight more than my diabetes management. 

I am not sure how my experience going for my diabetes appointment will change as I had my last appointment just before the circuit breaker measures kicked in. My next appointment will be in September, so I will wait for the SMS notification from the hospital to see what options there are, but I will still need to make a trip to the hospital to get my medications.

Stephanie: COVID has helped me become more conscious about my exercise and food habits, so my diabetes management has actually been reasonably good! My usual 30 minute walk as part of my commute each day turned into intense workouts which has evened out my blood sugars and boosts my mood. I’ve also taken a break from CGMs and relied on the trusty finger prick, so I haven’t been getting that extra fatigue that comes with more data. 

Fi: I think the biggest impact for me in relation to my diabetes is exercise. Finding time to exercise especially with the restrictions, juggling work and home schooling has been challenging. I’m grateful I have a 7 yr old who loves playing hide and seek and freeze tag as this has kept me more active than I would have otherwise been.

What are you doing to stay positive?

Ashley: I think the biggest thing for me has been to focus on being kind to myself. Keeping up with social connections with my family, friends and colleagues has been key to being sane, grounded and reminding me that I’m not alone. I also try to find things to look forward to such as some online shopping and changing my physical environment around me by getting flowers or lighting a candle. 

Katie: I echo Ashley’s reminder! Being kind to myself is the hardest thing, but also the most important. I also try to remember that this is temporary, even though we don’t yet know for how long. 

Pei Yan: I guess being able to go back to work in school and resuming most of the activities I like before the Circuit Breaker has been a relief. At the same time, I am thankful that I am surrounded by students whom I can have fun social connections with at school. Dynamics among social groups of friends seemed to become distant, but there will be other groups of friends around to cheer me up or to have fun with.

Stephanie: I think we’re all on the same page with this one. It’s the little things that matter right now. I’ve been trying to take in everything and every interaction as if I was a kid seeing things for the first time, and really delving into the beauty of the landscape, why I enjoy the company of certain people, crying openly (it gets so overwhelming sometimes) and sharing those pieces of you that are usually stored away because life is too busy. 

Fi: I’m so grateful for technology and being able to connect with family and friends. My parents have been doing virtual cooking classes with their grandsons, which have been so much fun. Another highlight has been our son reading to his Nan each day on FaceTime. Seeing our little boy adapt to the new norm has made it so much easier for my husband and I to stay positive. I have also found a new love of rainbows and the hope they bring. Though COVID has definitely thrown us challenges  it has definitely made us appreciate everything in our life so much more.

And there you have it! A huge thank you to our team who have so openly shared their experiences with adjusting to our new normal. How about you? How are things going for you and what are you doing to stay positive? We would love to hear from you!

In our last blog post, we talked about the importance of sharing stories. Recently, I attended a momentous diabetes event that reminded about the significance of this. During National Diabetes Week in Australia every year, the Kellion Victory Medal acknowledges and celebrates a special milestone for people who have been living with type 1 diabetes for 50 years and over. We know how challenging living with diabetes can be and many of us celebrate or acknowledge our diaversaries. So it’s only fitting that we throw a big party for a milestone like 50, 60, 70, 75 and 80 years of living with a broken pancreas! 

As part of the Diabetes Victoria Consumer Engagement Community, I was invited to present the medal to awardees. To me, this is a tremendous honour as I got to read each of the recipient’s stories as they received their award. Their stories talked about their struggles, achievements and most importantly, how they’ve lived their best lives. It was a huge privilege to share such a special moment in their lives with them.

Reading out story after story, it dawned on me how much diabetes technology has evolved and how quickly it has advanced over the years. Time and time again we heard about how blood glucose monitoring was the biggest turning point from them when we’re here pining for the next CGM update! We heard about boiling syringes for to sterilise them before use and innovative ways of collecting urine samples from babies to test their sugar levels. We also heard how many of these inspiring people with diabetes advocated for change and pushed the boundaries and stereotypical perceptions of what we can achieve while being pancreatically challenged. We heard about women with diabetes having healthy babies and raising thriving families and business people travelling the world and navigating time zones and different cuisines with what we consider now to be basic technology. Yet, time and time, we hear the resounding them of people living full lives despite diabetes. We heard about resilience, hope and love. 

For many of the Kellion Victory Medalists, they attributed their successes to having adequate support from family, friends and loved ones. Love and support came through in different ways, from helping with hypos to being a sounding board. These guys showed us that diabetes is tough, but having your tribe around you makes it a bit easier. Speaking to some of these medalists, they would never consider themselves to be inspirational figures. Little do they know how much it means for the younger generations of those living with diabetes to hear their story and the hope that it brings. These individuals have paved the way for us forward be it as a role model, for future research, technological improvements or support services. To our Kellion Victory Medalists, we say thank you.

Every person experiences the world in a different way, and each story provides a new and unique perspective to the world we live in. As members of Beta Change, we often hear people with diabetes say that living with this condition can be isolating and lonely – until they meet someone else living with diabetes or discover the diabetes community online or IRL. As healthy as it is to share our experiences of what it’s like to live with diabetes in our day-to-day lives, no one will really understand better than someone else who also lives with it. 

It’s the feeling you get when you tell someone that you’ve had a terrible night’s sleep because of a raging hypo where you inhaled the kitchen and the other person says “I know that feeling, I had that too a few nights ago. It sucks!” You know they get it. They understand the sheer panic of waking up low in the middle of the night and eating like your life depends on it…then waking up with a hypo hangover.

The power of sharing stories also comes in the form of diabetes hacks that no textbook could provide, like using an old test strip container to store your used test strips so your bag doesn’t drown in them. We often hear about the latest diabetes technology from someone who has attended a conference on the other side of the world, and we read blogs from other people with diabetes who’ve figured out how to overcome fears of hypoglycemia while accomplishing impressive feats.  

Sharing stories is also about sharing emotions when it comes to living with diabetes. It’s about feeling the rage when a community member experiences stigma or discrimination because of diabetes. It’s feeling the sadness when a blue candle is lit for someone around the world. It’s the frustration we feel when the industry reduces affordability of basic medication or technology needs of people with diabetes. It’s a feeling of pride when a community member is recognised for their advocacy efforts and the simple feeling of joy when someone else is having a good diabetes day. 

Exchanging these stories gives hope and inspires those in a dark place not to give up. They motivate others to fight harder for their community and remind us that life is precious. Some stories change us and stay with us forever, and can also help those who don’t live with diabetes better understand what we go through each day, and the challenges we face and the achievements that are meaningful to us. 

More importantly, these stories contribute toward a shift in the way people think and talk about diabetes, which is important in this society where we constantly hear noise about the negativity and blame associated with diabetes. Our stories remind others that there is a person behind the condition and that human lives are complex and not just about diabetes management. At Beta Change, we show the world what people with diabetes can achieve – and that none of us are doing this alone.

Want to share your story? We want to hear from you! 

The theme for World Diabetes Day this year is Family. We know that diabetes doesn’t just impact us as a person; our friends and loved ones play a big role in our lives. This year marks a special one for Fi as she acknowledges 30 years of living with type 1 diabetes. We’re humbled to share a beautiful poem she’s written for this occasion.

I am a proud mum, wife, daughter, sister, aunt, friend and nurse.

I am privileged to be a midwife and welcome so many beautiful children into the world. 

I’m blessed to have seen angels fly and families show strength they never knew they had in the midst of heartache.

I’m privileged to be a diabetes educator and walk alongside so many inspirational children, adolescents, adults and families on their type 1 journey.

I believe that diabetes is not a barrier to achieving your dreams.

I’m inspired by members of our tribe.

I believe in the magic of diabetes camps.

I know I’m not alone in this type 1 journey.

I now know it’s ok to say, “I’m NOT OK.”

I am inspired by my hypo helpers: Lukas, Markus, and Alexander.

I am grateful for the gift of motherhood. 

I understand the impact of diabetes on the whole family.

I am thankful and have so much love for my amazing support crew led by my incredible husband Andrew, our beautiful son Alexander, and our family and friends.

This year I have lived with type 1 diabetes for 30 years.

I am brave.

I am resilient.

I am determined.

I am Fi and I’m proud to be me.