I spent a fair chunk of last night ploughing through some uni work. I finished up at around 9pm, brushed my teeth, put on my pyjamas and sat down to catch up on the last episode of Australian Survivor. My eyes kept wandering to the clock on the DVD player, which was edging closer to 9.30pm, while my brain kept reminding me of my early start in the morning and my desire to maintain this post holiday feeling of zen. At around the 10 minute mark, sleep won out over Survivor as I switched off and headed to bed.

I feel as though I’ve been chasing my tail for days when it comes to my blood sugar levels. Nothing awfully high, but still a feeling of not quite being able to curb those highs as effectively as usual. I had woken up at around 9.7 yesterday, and was unable to catch my tail for the majority of the day.

As I climbed into bed last night, I noticed that my Libre trend was slowly but surely creeping up again. Just to settle my paranoia, I pricked my finger, which registered at 10.4. I gave a 2 unit correction. Not feeling confident that this would be enough to bring me down, I also set a temporary basal rate of 120%. I so badly didn’t want a repeat of that morning.

I lay there in bed, but couldn’t will myself to go to sleep while my mind wandered indecisively over what I should do. It was in that moment, at about a quarter to ten on a Wednesday night, that I registered that my levels hadn’t been co-operating quite right since I returned home from Sydney on Friday.

It’s not the first time that I’ve thrown away travel insulin, convinced that it’s somehow spoiled in-between flights and hotel rooms and days out in the sun. But I always just thought it was pure paranoia.

I always carry my insulin with me when I fly. It normally sits in my satchel, which sits on the ground underneath the seat in front me during the five hour flight across the country. I had already replaced my cartridge a day earlier with a fresh one from my travel stash, with no noticeable difference.

So, I heaved myself out of bed, pulled a fresh cartridge of insulin out of the bar fridge, and begrudgingly replaced the cartridge on my pump, knowing that I wouldn’t be able to sleep while my mind was plagued with diabetes paranoia.

Today hasn’t been perfect, but my insulin is definitely working a lot better and those Libre lines aren’t slowly creeping upwards out of habit.

Diabetes. The sixth sense that I didn’t know I had.

The Value of Lived Experience.

It’s been a really challenging year. I still feel as though I have mountains to climb to get to where I want to be with my degree and my career. I have wondered whether diabetes would be one of the things that would have to give way this year. I’ve stared into the depths of my WordPress dashboard at many points over the course of this year, wondering if I have anything left of value to add.

Then I attend a diabetes event like Australasian Diabetes Congress, and I am reminded that my impact, as a person living with diabetes is always something that I underestimate. People like me might only have a very small presence at conferences like these, but I always underestimate our impact. I couldn’t agree more with Kim’s sentiments around advocating for the value of lived experience during Tuesday’s #OzDSMS summit.

When I first attended this conference in 2017, I expressed that it was a truly humbling experience. It was surreal to be surrounded by so many healthcare professionals (particularly diabetes educators) who knew of us from our online presences. Who had probably never heard such candid conversations from people with diabetes outside of a clinical setting, but still wanted to hear our insights and learn from us. Two years later, and those feelings haven’t changed.

It’s been interesting to watch industry and diabetes orgs habitually send people who are relatively new to their organisation along to events like these, where they can learn from people like us. I think that’s a great move, one which I do commend. It’s also been surprising to hear more than a few comments about my content being used to support internal policy work by various industry. While this is undoubtedly a public forum, there is a value on lived experience and somehow I don’t think many in the industry realise that.

When I first found the diabetes online community, watching others share their lives with diabetes so openly made living with diabetes feel normal for the first time in my life. I remember looking on in envy at some of the amazing things that were going on all over the world. In person peer support felt really far away. I felt like I would have to travel to the other side of the world to attend a diabetes meet up.

Yet here I am today, surrounded by such an amazing tribe of people with diabetes. People who are bright, people who are actively bringing about change in their own communities, and above all people who I can exchange a look at and know that they simply ‘get’ it.

At the end of Tuesday’s #OzDSMS summit, I expressed to a room filled with fellow people with diabetes what an absolute privilege it always it to sit among such a bright group of individuals and hear their perspectives.

My cup is truly full.

(I know, I talk about peer support far too much…)

Disclosures: Ascensia Diabetes Care provided hospitality during Tuesday’s #OzDSMS which included lunch, drinks and canapés. Diabetes Australia covered my flights, three nights accommodation, some meals and registration to attend the Australasian Diabetes Congress in Sydney. I gave up my own time to attend, and am sharing my own thoughts, as always.

Day 3 at the Australasian Diabetes Congress

Welcome to the third and final day of the Australasian Diabetes Congress, the joint annual scientific meeting of the Australian Diabetes Society and the Australian Diabetes Educators Association. I’m here as a part of Diabetes Australia’s ‘People’s Voice’ team of consumer reporters.

My morning started with a detour to the True Plus stand, home of some amazing chocolate flavoured (and non-chalky) glucose tablets. Special thank you to Renza, who offered to walk past and get me some more samples. What are friends for?

My day kicked off with a Clinical Symposium on Technology for the prevention and management of complications in diabetes. With eye screenings recommended every two years, the audience heard about the challenges of engaging people with diabetes in their eye care after such a long span of time had passed, and also challenges in encouraging people to return for monthly retinopathy treatments. We were shown some new advances in retinal imaging that were addressing cost, bulkiness and the need to bring the person with diabetes to the eye camera.

Of most interest was the concept of Artificial Intelligence, which was particularly useful in remote and rural communities. We were presented a case study that comprised of a portable, offline retinal screening device. This was then combined with an offline Artificial Intelligence system on a smartphone that helped non-eye specialists to effectively assess eye health.

After morning tea, the #DAPeoplesVoice team headed to a session on technology and type 1 diabetes in young people. Young adults aged 18-25 were a particularly challenging age group in terms of meeting their hba1c targets, due to significant life changes happening around these ages. There was one graph presented that mapped out a clear spike in hba1cs among people in their late teens and 20s. I also wondered if the models of care didn’t warrant a further review. I know that transition from youth to adult services is still a challenge, while many people also fall through the cracks due to a lack of person centred care.

Research was also presented into improvements on hba1c since the introduction of subsidised CGM in under 21s in April 2017. Without going into too much detail, I feel very much that it’s still too early to draw any conclusions. Another study compared insulin pump therapy to multiple daily injections. While insulin pump therapy did produce slightly better hba1c results, the margins were extremely slim.

The most interesting presentation was one on uptake of CGM. 115 survey participants between the ages of 15 and 21 were offered subsidised CGM, and were followed at the 3 month and 6 month mark. Only 44 patients were using CGM at the 3 month mark, while only 18 stuck with it by the 6 month mark. Reasons cited were discomfort, inconvenience, attachment, visibility and a lack of suitability with their lifestyle (such as playing sports). I think these issues are particularly pertinent to kids, who just want to be kids.

It was great to see Bodil from Ascensia Diabetes Care and Donnette (sorry if I’ve spelt that wrong!) from Diabetes Australia ducking in and out of sessions over the past three days and immersing themselves in the conference experience. After passing ships in the night, it was also great to catch up briefly with Bec and Amy from the Family Centre at the Airport.

It’s a big ask to invest so much of your time time in the world of diabetes. A friend of mine once expressed the importance of taking whatever opportunity you get to (for lack of a better word) advocate, and I couldn’t agree more. When I first came to this conference in 2017, I expressed how truly humbling it was to connect with so many people who were passionate about diabetes. Two years later, and those feelings haven’t changed.

After an amazing week spent in the company of so many tribe members, my cup is well and truly full. Thank you to everyone who made my #19ADC experience so special.

Disclosures: Diabetes Australia covered my flights, registration, some meals and three nights accommodation to attend the Australasian Diabetes Congress as part of their ‘People’s Voice’ initiative. I have given up my own time to attend, and am sharing my own thoughts here, as always.

Day 2 at the Australasian Diabetes Congress

Welcome to day 2 of the Australasian Diabetes Congress, the annual scientific meeting of the Australian Diabetes Educators Association and the Australian Diabetes Society. I’m lucky enough to be here as part of Diabetes Australia’s ‘People’s Voice’ team of consumer reporters.

Tech news first! It was great to catch up with Sylva and James from Ypsomed, who this morning announced some infusion sets with Luer Lock connectors. This opens up the Orbit range of infusion sets to people using other insulin pumps with Luer lock connections.

Leanne from AMSL Diabetes also had the chance to catch up with her favourite customer. Dexcom G6 and Basal IQ, the low glucose suspend update to the Tandem t:slim insulin pump, has not yet received regulatory approval. The hold up may have something to do with all CGM products on the market requiring reclassification from Class 2 to Class 3 from the powers that be (or something like that). Leanne wouldn’t speculate on a timeframe for approval, but in the meantime we have a new hashtag going, #BasalIQForFrank. Get behind it!

On my way to this morning’s session, I ran into superstar endocrinologist Kevin Lee after some back and forth interaction through the #OzDOC. He was exactly as I imagined online. Great to meet you, Kevin!

I sat in on the National Association of Diabetes Centres (NADC) symposium this morning and was glad for the opportunity to gain a better understanding of the work that they do.

The first part of the session dealt with findings from the Australian National Diabetes Audit. The audit has collected data from over 6,000 patients to date from diabetes service centres around Australia. Each centre then receives a custom report comparing their performance to other centres across the country. I felt the measures surveyed were comprehensive, and it was particularly pleasing to see measures such as quality of life and diabetes distress covered. The gaps identified among patients were unsurprising: difficulties around blood glucose monitoring, taking medication, physical activity and following a prescribed diet.

The second part of the session dealt with the type 2 diabetes ‘models of care’ toolkit. This project identified existing models of care that were providing improved care delivery, patient satisfaction and improved outcomes – exploring how these models could be applied to different geographical locations and more integrated diabetes care across providers. Well done, team NADC!

After morning tea I went into a session on diabetes and the gut microbiome, which seems to be the latest craze. In people with type 2 diabetes, delivery of prebiotics and probiotics had shown promising results. Things like improved fasting glucose, hba1c, triglycerides and other markers. However when Iranian research was removed from these findings, prebiotics and probiotics showed no benefit for type 2 diabetes.

The session touched on artificial sweeteners. My understanding was that because the composition of each person’s gut is different, some people absorb the sweeteners while others build up a defence to them. Which might explain the theory as to why some people are unaffected by artificial sweeteners, while other people (like me) spike. Lucky I prefer the real stuff!

This afternoon I was presenting at a ‘Consumer Voice’ symposium which looked at collaboration in diabetes care with three other panellists. It was great to hear fresh (to me) perspectives in optometrist Amira, and Diabetes Australia’s Chris who shared his personal experiences with type 2 diabetes in Aboriginal communities. In line with previous years, it is generally the diabetes educators who tend to come along to sessions like these and want to learn from lived experience. While it would have been nicer to see more healthcare professionals tag along, I do want to thank the Australian Diabetes Educators Association for providing us with this platform.

Disclosures: Diabetes Australia covered my travel, three nights accommodation, some meals and registration costs to attend the Australasian Diabetes Congress as part of their ‘People’s Voice’ initiative. I gave up my own time to attend the Congress and am sharing my own thoughts here, as always.

Day 1 at the Australasian Diabetes Congress

I’m in Sydney today for the Australasian Diabetes Congress, which is the annual scientific meeting of the Australian Diabetes Educators Association and the Australian Diabetes Society. I’m here with the support of Diabetes Australia as part of their ‘people’s voice’ team of consumer reporters.

Most exciting news of the day: there’s a new tubeless patch pump for Australia! Roche have launched their new Solo insulin pump today. It comprises of a remote handset, a pump base that needs replacing every four months, a reservoir and cannula. The reusable components will be funded by private health insurance like other insulin pumps, and the disposable components are expected to be listed on the NDSS in November.

I did have a brief hands on with the pump this morning, and it looked really encouraging. It looks much smaller than the late Cellnovo. Unlike the Omnipod, the pump can easily be unclipped from the site as needed, meaning that you can see what’s going on underneath your infusion site. I also liked that you don’t need to throw away the whole ‘pod’ should the site fail. More on that in another blog!

The opening plenary was a little disappointing, focussing on diabetes in China. As the opening session ‘psyching’ delegates up for the Congress, I feel it could have benefitted from a more engaging speaker and broader topic. But hey, that’s only my two cents.

After morning tea, I dipped into a presentation on the PREVIEW study, which looked at lifestyle interventions for the prevention of type 2 diabetes. Participants shed most of their weight during the first eight week phase of this study, through a very low energy diet of meal replacements. During the second phase of the study, eligible participants received support to implement diet, exercise and behaviour change. Participants were randomised to two diets and exercise plans. Diets comprised of low to moderate protein and low to moderate glycemic index, while exercise was HIIT training.

The study followed participants for three years, with the support becoming more remote from the 12-36 month mark. Of the 945 people who completed the lifestyle intervention study, only 4% of people developed type 2 diabetes after 3 years and weight loss maintenance was excellent. I’m not an expert, but I think the key to weight maintenance is balancing kilojoule consumption with energy expenditure, and it’s inevitable that a structured plan will produce the results. For some of these research participants, the meal replacements were the most nutritional thing they’d eaten in some time!

After lunch I headed to an ADEA symposium. The most interesting presentation was a case study at Blacktown Hospital in one of Western Sydney’s ‘diabetes hotspots,’ which was placing a strain on hospital resources and wasting patients’ valuable time. A review of the diabetes clinic saw many implementations to optimise time prior to appointments. This included the implementation of a central point for clinic referrals that were coming in from many different places, tended to by the appointment of an enrolled nurse. The clinic also made reminder phone calls prior to appointments, chased pathology results and had a nurse download data from patient’s glucose meters. This is definitely what person centred care looks like!

It was fantastic to finally meet CDE/Nurse/Midwife Belinda Moore after lots of back and forth online through #OzDOC over the past few years. It was also great to catch up with former Roche-turned-B-Braun diabetes division manager Nicky who makes a noticeable effort to keep up with some of us #OzDOC folk.

The final session of my day was the ADS Clinical Young Investigators session. The most interesting session here looked at reducing glycemic variability among people with type 1 diabetes, which I think is often overlooked after a day of research presentations so heavily focussed on hba1c.

In this study, research participants were given education in conjunction with bolus calculations to reduce glycemic variability. In both insulin pumpers and Multiple Daily Injections, breakfast was the most challenging time of the day in terms of glycemic variability. Which, as a person with diabetes, makes total sense when combined with dawn phenomenon. I know that my insulin needs change while I’m sleeping depending on where my blood glucose levels are sitting, how well I have been eating and sleeping, and even how early the sun is rising in the morning!

Research presented suggested that insulin pumpers may have a better quality of life. Insulin pumpers in this study ate breakfast an hour later than those on MDI, and tended to eat more. I know for myself alone, a pump (combined with learning more about my diabetes) has definitely helped me to find more freedom to eat to match my feelings of hunger. The sleeping in…well, it still needs to be planned to an extent.

Disclosure: Diabetes Australia covered my travel, registration and three nights accommodation in Sydney to attend the Australasian Diabetes Congress as part of their ‘People’s Voice’ initiative. I gave up my own time to attend, and am sharing my own thoughts as always.