I Hear You.

Last week the DSMA Twitter account, (run by someone who I feel does a brilliant job of fostering inclusion within the diabetes community), sent out this Tweet.

My first thought was privilege. We must be mindful that the majority of the people within our online communities are highly privileged people.

Even though the world around me will never be perfect, I am a highly privileged person. I live in a country where my access to supples and healthcare is a non issue. I have modern tools at my disposal that help me to manage my diabetes in the best way that I can. I have a roof over my head, money coming in and people around me who I think the world of.

The people with diabetes who I know in person are among the most well connected, well informed people who are more than capable of advocating for themselves. The people who I interact with online are part of vibrant communities filled with peer support, information sharing and robust discussion.

Yet still, I don’t feel that any of these interactions are truly representative of the broader population of people with diabetes.

We all get excited by technology, and yet my feeling is that the majority of people manage their diabetes with an insulin pen and blood glucose meter. I spend hours scrolling through diabetes feeds every week, and yet I’m sure there are plenty of people out there who genuinely don’t want to know anything about it. There are people who wear their diabetes with pride, while I expect there are many who don’t feel the need to do so for a number of different reasons.

I’ll be the first person to say that I don’t know how to bridge the gap between those who are privileged and those who aren’t. But there is something that crossed my feeds last week which I really look forward to seeing evolve within the DOC.

‘I Hear You.’ It’s a small idea that was born from Heather, a researcher living with diabetes in the US, in collaboration with a group of people with diabetes. The idea is that we as a community, can offer an ‘I Hear You’ to others in the community, with the hope that it might help our peers feel more included. Particularly for those who feel their voices aren’t often heard. You can read more about Heather’s research, and how this idea came about on her blog here.

I have lived with diabetes since the age of 17. I know first hand just how isolating living with diabetes can be. I also know that connection and peer support has opened up my world and changed my outlook on diabetes for the better. That’s my sole, selfish motivation for continuing to participate in this amazing community.

I hear you.

But that’s only my story. I don’t represent, nor do I want to represent, any other person with diabetes. Your story is important, and I want to hear it too.

Without the New and Shiny.

All too often in the diabetes community, it feels like we must be using the latest tech and the shiniest tools in order to manage our diabetes well. Sure, I’m guilty of talking up the devices that I use. I love my insulin pump, and despite the extra work it entails it has definitely improved the quality of my life. Your diabetes may vary, of course. I am also extremely privileged to have health insurance that pays for the pump, and the capacity to pay for the heavily subsidised consumables here in Australia. Thank you, NDSS.

Sure, I’ve used FreeStyle Libre intermittently and love it. It was particularly helpful to me during my pump start, in nutting out a strategy around managing my blood glucose over the better part of three years, and also just for those times where I wanted a break (as recently as three weeks ago). But it was also unhelpful to my bank account balance and to my mindset after prolonged use. Today, I would probably class myself as someone who uses it for a specific purpose, applies that knowledge and then goes back to reality.

When it comes to blood glucose monitoring, It often feels like I must be doing something wrong because I’m not sporting a trendy sensor on my arm or having blood glucose readings drip fed to my wrist every minute of the day. Now this, on the other hand, is my idea of a real watch…

Company reps often seem to be in their own little world when they bang on about all of the blood glucose data that’s seemingly not available to someone not wearing a Continuous Glucose Monitor. I think that couldn’t be further from the truth.

Contrary to the impression you may have of me, a blood glucose meter and lancing device are quite honestly still my primary method of monitoring my blood glucose. It is definitely possible to manage diabetes well with just those tools alone.

When you check your blood sugar as often as I do, you can still obtain a pretty nice picture of what your levels are doing throughout the day. I would typically check on waking, after breakfast, before morning tea, after morning tea, before lunch, after lunch, before my afternoon coffee, after my afternoon coffee, before dinner, after dinner, before bed and during the night if I stir. That’s 12 times through the day. I’d comfortably throw another three in there for good measure.

I don’t check my blood glucose levels so often because I’m a failure or anxious or non compliant or doing really poorly with my diabetes. I check my blood glucose that often because it gives me more information to base my diabetes management decisions off. It helps me to feel more grounded and accountable for what I am doing. It helps me to produce more numbers that are in my target range.

Many of the AccuChek and Contour meters today have Bluetooth capabilities, and will wirelessly send the data into their companion apps. These apps keep me motivated. They plot out things like average glucose, standard deviation in my readings, readings below and above my target range as well as a visual daily graph of my glucose trends. I’ve really come to appreciate these, particularly in the past couple of months.

Sure, it’s a pain having to stop and stab my finger 15 plus times per day. Double points if you’re like me handling cardboard boxes all day and have to stop and wash your grubby mits first. It’s a pain having to carry my glucose monitor and strips and lancet around in my pocket when I go for a short walk around the block, compared to simply carrying my iPhone. If I won lotto tomorrow, CGM or Flash are probably the first things I’d shell out on.

But until then, I know that it is absolutely possible for me to manage my diabetes just fine without all of the new and shiny. I know my bank account loves me for it, too…

Winter Blues.

Uni goes back this week after a Winter hiatus. While I haven’t exactly been looking forward to it, thankfully week one is just a ‘go through the unit outline’ kind of a week. Which means a few more relaxed nights catching up on Australian Survivor.

At the beginning of my break, I stared into the depths of my wardrobe where my diabetes gear is housed, contemplating change. Did I want to take a pump break? Try that new meter? Or put my new faster acting insulin to the test? I got as far as a different meter, but after a few false readings was quickly reminded of why I love my AccuChek Guide so much and shoved it back into a drawer.

The more that I stared at the contents of my wardrobe, the more I realised that I no longer desire change in the way that I manage my diabetes. Which is weird, because for the greater part of the past three years, I’ve genuinely wanted change to help me to better cope with diabetes at that specific point in time. Perhaps it meant seeking out an insulin pump to give me more flexibility in managing my blood sugars. Or subsequently taking a break from the pump to simplify things and alleviate the mental burden of navigating pump settings. Or hassling AMSL Diabetes to cough up a #TslimForFrank so that I’d have something more modern and wearable to look at.

Yet now, I feel comfortable with what I am doing. I feel comfortable with what I am using. I also feel confident that what I am doing and what I am using allows me to manage my diabetes in the best way that I possibly can – for the time being.

In the midst of a crazy intense year, I think my real focus is minimising the burden of diabetes on the rest of my life. At the moment, I don’t have the headspace to deal with the hiccups that may come from adjusting to different tools. I need that brain space for my studies, for my work, for my family and for my life.

So I guess for me right now, minimising the burden of diabetes doesn’t involve paying attention to the diabetes itself, but moreso the things around the diabetes.

I’ve been getting more organised with my meals through the day over the past couple of weeks. When I’m more organised with my meals, I eat better than when I’m not. When I eat better, I feel better. See: this post. I’ve added a few more recipes to my brekky/lunchtime/snack repertoire. I’ve also been consciously trying to eat more veg and drink more water.

I’ve got alarms set on my phone to remind me to change my infusion sites and refill my cartridges. I’m in a pretty good routine of changing my site every 3.5 days, so that changeover falls every Tuesday afternoon and Saturday morning. Cartridges get replaced and filled with half of a penfill on a Saturday, and topped up with the back half on a Tuesday.

I’m also hoping to give myself a little more structure in my studies this semester. It often became far too easy to sit pondering over a problem for far too long, when it could be more easily solved with a fresh set of rested eyes. I know that when there’s more balance between study and free time, my mindset is better – which is equally pertinent when diabetes is strapped along for the ride.

Speaking of mindset, sunny Winter weather of late has also given me more time for this.

I’ll be honest – the past six weeks have been weird. I’ve quite possibly been consumed by everything that I want to get done in the back half of this year at times.

It took a while to get here, but I’m happy to report that I’m feeling the most refreshed that I have been over the past six weeks. Here’s hoping that my second semester is easier now that I know what to expect.

The Not-So-Serious Stuff.

When I first started writing here on my blog, I remember seeing lots of the more serious stuff from the diabetes orgs. That diabetes is the leading cause of this, and puts you at a greater risk of that. I can still remember seeing all of those messages, and wondering where all of the positive stuff was. In a small way, I just wanted to show a different side to diabetes. A more positive side.

I can remember wanting to write about things like Climbing the Sydney Harbour Bridge, graduating from uni and blowing out the candles on my birthday cake. I wanted to churn out those positive messages about people with diabetes being superheroes, able to do absolutely anything that they set out to do. Because after all, why shouldn’t we?

At the time, living with diabetes was hard. I had no peer support. I didn’t feel confident navigating this condition around my life. I didn’t even know what the hell I was doing. This crazy journey has also taught me for a second time that living with diabetes is hard.

It’s hard playing pancreas. It’s hard finding the mental space and physical energy to manage this condition. It’s hard to give myself encouragement when I’m so invested in the numbers and only have myself and my long term health at stake. It’s hard not to be consumed over how well placed I am to continue to be able to afford my diabetes care into the future.

Diabetes is serious. As I’ve began to take my condition more seriously, I’ve come to appreciate the importance of getting all of those annual screenings. I want to be aware of those things that diabetes might put me at risk of developing. I want to engage in some of those more difficult conversations. In 2019 people are still dying from missed diagnoses and the exorbitant cost of insulin abroad.

Diabetes tools and tech have also come a long way in the short time that I’ve lived with it. I remember my diabetes educator requesting a special USB cable and software from Abbott just so that I’d be able to see my BGLs on a computer screen back in 2010. Today those readings send wirelessly to the mySugr app on my iPhone for instant review. Then there’s things like NovoPens, insulin pumps, Libres, CGMs, faster insulin and closed loop. Phew!

So, I guess the point of this long winded post is that the world of diabetes through my eyes has become this great big complex, serious and even political thing over the past few years. While that’s never going to go away, I guess I’d like to be reminded of some of some of that not-so-serious stuff more often as well.

Like this poster that I was reminded of earlier this week, a few days too late after National Diabetes Week. And the frame above it sitting proudly on my wall, both bringing a smile to my face when I think of them.