Diabetes Advocacy

How Can We Change Attitudes to Glucose Monitoring With Limited Subsidies?

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I recently completed the yourSAY (Self-management And You) study, where I was invited to give my insights into diabetes self management and glucose monitoring behaviour here in Australia. As I was answering the questions, it became evident to me that the survey was trying to hone in on people’s attitudes and behaviour towards blood glucose monitoring.

One of the survey questions asked me to identify when I would check my blood glucose levels. Would I check when I wake up? Before meals? 2 hours after meals? Before bed? When I feel unwell? When I feel my blood glucose might be high or low? Before I drive a motor vehicle? Before I exercise? During the night? Or “just to check?” Naturally, I ticked all of the boxes.

If you’re a long time reader of this blog, you’ll know how strongly I feel about blood glucose monitoring. How it helps me to feel grounded and in control over my diabetes. How it gives me a sense of certainty, and peace of mind over this rollercoaster of a disease. And how lost I would feel about it. I have never, ever needed any motivation to check my blood glucose levels in the years that I have been living with diabetes. But as I was completing this survey, it became apparent to me that many people might not be as motivated to do so (no judgement either way).

I might be wrong, but it seemed to me that this survey might have an end view of encouraging people with diabetes to check their blood glucose levels more often. And when I think of this issue, one thing comes to mind. 

How am I supposed to check my blood sugar levels that often when our test strip subsidies here in Australia are so limited? How am I supposed to check my blood sugar levels when I get behind the wheel, when I exercise, when I feel unwell, before a meal, after a meal, when I feel low, when I feel high, when I’m unsure and during the night – when our National Diabetes Services Scheme only subsidises 5 blood glucose tests a day? How am I supposed to check my blood sugar levels when I am being told that I consume too many diabetes supplies? (You can read more about this in the column I wrote for Insulin Nation in July).

If this is indeed the end game that our diabetes regulatory bodies are seeking, then surely the sensible approach would be to re-evaluate our healthcare policies.

I must say that completing the yourSAY survey was rather stimulating. It certainly made me reflect on my diabetes management strategies here in Australia, and I’ll be sharing some more of my thoughts here in the days to come.

If you are a person with diabetes living in Australia, you can complete the yourSAY survey by visiting yoursay.org.au.

Diabetes Horror Stories in the Media

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Last night’s episode of 7.30 was rather confronting with some of the harsh realities of diabetes in Australia. We were introduced to one of Australia’s many diabetes “hotspots,” Blacktown in New South Wales. We were told that 40% of patient blood tests in the Blacktown Hospital emergency room showed diabetes. One third of those patients were unaware that they had diabetes, and another third were pre-diabetic.

We were introduced to a woman who ate her way to type 2 diabetes with junk food. We were told by the CEO of Diabetes Australia that one quarter to one third of hospital beds in Australia were filled with people suffering from diabetes complications. And we were introduced to an elderly woman who thought she had reasonable control of her blood sugar levels, only to be told by doctors that she needed to have her foot amputated.

Honestly, I just feel torn when I see these diabetes horror stories in the media.

Yesterday I wrote about how strongly I feel about not seeing the people around me develop diabetes. And how I am all for doing my bit to help prevent new cases of diabetes.

And then I see stories in the media like the one I saw last night. Stories that leave me stunned. Stories that leave me fearful. Stories that make me want to find a corner and curl up into a ball.

It doesn’t matter how average, how decent or how good of a job I feel like I’m doing. I see stories like these and all of that work is reduced to shreds. I’m beating myself up again. I’m thinking about all of the bad decisions I’ve made. I’m thinking about all of the potential damage I’ve done to my body. I wonder if I will be one of those diabetes horror stories, one day. And I wonder if there’s any point in trying.

But these stories are true. They do happen. Is it fair for me to attack them, or to pretend that they don’t happen in real life? I don’t know.

I guess all I’m trying to say is that there are people watching these stories who are already living with diabetes. Some of the people seeing these stories are trying their very hardest to manage, and stay on top of this rollercoaster of a disease. And horror stories like these don’t give them much of an outlook, or motivation to keep going.

Prevention is important. But support and encouragement for those already living with this disease is equally important, too.

The transcript from last night’s report on the 7.30 program is here. You might be able to watch the report too, depending on geography restrictions.

I Will Happily Shoulder the Burden of Diabetes

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I can still remember something that my Mum once told me. It was shortly after I was diagnosed with diabetes. And it was something that I don’t particularly like to think about. We were sitting at the dinner table one night talking about diabetes, my outlook for the future and the hope that there would be a cure in my lifetime. And then Mum told me that she wished she could take my place. She wished that she could have insulin injections instead of me.

As kind a sentiment as it was, I honestly couldn’t think of anything worse. The thought of my Mum having diabetes scares me. The thought of seeing any of my family members develop diabetes scares me. There was a time where my brother was feeling a bit deviod of energy, and I was jumpy. I was scared out of my mind that he could have diabetes, too.

I know how physically exhausting it is to deal with this disease day in, day out. I feel the trainwreck of emotions that diabetes puts me through every single day. And diabetes sends me jumping through an infinite number of hurdles that life throws at me.

I live, and deal with diabetes day in and day out. I know that I am more than capable of living, and dealing with diabetes each and every single day. And truth be told, I am happy to be the one to shoulder the burden of diabetes in life. I will gladly be the one in my family to have diabetes. If it means that I won’t ever have to see someone I love go through what I have to each day, then having diabetes will all be worth it. And if there is something that I can do to prevent others out there in the world from going through what I do each day, then I am all for it.

The International Diabetes Federation’s Call to Action on Diabetes campaign has caught my attention on social media over the weekend. The campaign calls on us to reach out to our political leaders on Twitter and urge them to take action on Sustainable Development Goals (#SDG) that will help to prevent the global epidemic of diabetes. To help minimise some confronting diabetes statistics like these:

  • 387 million people have diabetes; by 2035 this will rise to 592 million
  • The number of people with type 2 diabetes is increasing in every country
  • 77% of people with diabetes live in low- and middle-income countries
  • The greatest number of people with diabetes are between 40 and 59 years of age
  • 179 million people with diabetes are undiagnosed
  • Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes
  • Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults
  • More than 79,000 children developed type 1 diabetes in 2013
  • More than 21 million live births were affected by diabetes during pregnancy in 2013

Join the Action on Diabetes campaign by visiting www.idf.org/action-on-diabetes and tweeting out a message like this one:

The type of diabetes I have may not be preventable, but others are. And if there is something I can do to prevent others from going through what I have to each day, then I am all for it.

Just Another “Human” of Diabetes

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I was recently invited to guest blog for AkibaH’s Humans of Diabetes campaign.

I’ve written before about how diabetes campaigns here in Australia often overlook people already living with diabetes. One of the things I’ve always tried to convey through this blog is that diabetes hasn’t ever stopped me from living a relatively normal life. And Humans of Diabetes puts faces, personalities and positive messages towards this disease, something that we definitely need to see more of in the media going forward. I love everything that this campaign stands for, and it was a really easy decision for me to participate.

Check out the post I’ve written today over on AkibaH’s blog, where you can find out more about me, my connection to diabetes and my motivations for blogging:

https://glucase.wordpress.com/2015/09/16/frank-diabetes-online/

AkibaH have created the world’s first smartphone case glucose meter, which will “arm people with the foresight to know how their everyday decisions impact their health.” There’s also a great visual of the smartphone case glucose meter at akibah.com. Special thanks to Molly for inviting me to contribute!

Disclaimer: I did not receive any compensation for writing this post, and I willingly chose to participate in the Humans of Diabetes blog series.

What’s the Point of Telling Me About Diabetes “Epidemics?”

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What’s the point of telling me that more people are getting diabetes? Do you want me to feel guilty for this? Do you want me to take the blame for this? Do you want me to go out and tell people to stop getting diabetes? Do you want me to jump in my time machine and stop diabetes from happening?

What’s the point of telling me that I’m going to live a life of suffering? Do you want me to lose motivation to get out of bed in the morning? Do you want me to stop looking after myself? Do you want me to give up on all of my hopes and dreams? Do you want me to stop living as normal a life as I can? Do you want me to stop trying to be healthy and happy?

What’s the point of telling me that I’m going to develop diabetes complications? Do you want me to be scared awake from a terrible nightmare? Do you want me to chant these negative affirmations over and over in the morning? Do you want me to be too scared to walk out of the house? Do you want me to be too scared to cross the street?

What’s the point of telling me that my diabetes is costing the government money? Do you want me to feel ashamed of the disease that I live with? Do you want me to feel sorry for the politician that can’t go on holiday next year? Do you want me to stop testing my blood sugar levels? Do you want me to stop taking the insulin that keeps me alive and breathing?

I already have diabetes. I already live with diabetes day in, day out. And that’s not going to change anytime soon. I certainly didn’t ask for diabetes. And I certainly didn’t do anything to deserve my diabetes.

But I’m stuck with diabetes for the rest of my life. And so are the millions of other people out there in the world, with ALL types of diabetes. And while these messages may benefit the rest of the non diabetic population of the world, they do absolutely nothing for the people who have to live and breathe with this miserable disease every single day of their lives.

There are human bodies, human thoughts, human faces and human feelings behind this disease. Why not empower them?

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One of those “top of the world” moments on the rooftop of Parliament House in July.