Diabetes Musings

“Do You Ever Get Sick of It?”

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“My daughter’s friend has diabetes, and she had to have needles all the time. What a pain that would be! Do you have to do that?”

“Not anymore now that I have the pump,” I replied as I pulled it out of my pocket and began gesturing wildly. “So, the pump does two things. It gives insulin continuously in small increments to keep me steady in the background. Then I enter insulin doses myself to cover the foods that I eat. So yeah, the pump is really convenient when I’m out and about or at work,” I concluded in response to her remark.

“Do you have to do that thing where you prick your finger all the time as well? My daughter’s friend said she had to do it 10 times a day! You would think there would be some kind of technology that could do that for you by now!”

“Yeah. I’m wearing this at the moment” I said, picking up the FreeStyle Libre reader that was sitting on top of my iPhone. “So, I wear this sensor on my arm,” turning sideways and showing it to them. “And then I just swipe the reader over it and it tells me my blood sugar. So that’s a pretty good reading,” I said, holding it up and showing them my unicorn and graph.

“I’ll have to tell her about it.”

“Yeah, it’s really good for figuring out trends and things. But it’s expensive so I don’t wear it all the time. And the numbers do my head in sometimes.”

“Can you have a lot of this stuff?” She asked me, gesturing at the hot cross buns and chocolates on the table.

“Yeah, of course I can. I need insulin for most food that I eat, so that my body is able to convert it into energy. I would look at this,” I said, picking up a marvellous creations wrapper from the plate of Cadbury Favoutites on the table, “and say its about 8 grams of carbs. I know that I need 1 unit of insulin to cover every 8 grams of carbohydrate, so I would give a unit with my pump.”

Do you ever get…sick of it? I know that you would probably be used to it by now…

“I wouldn’t say I get sick of it. Most of it is second nature to me. If anything, it just feels really, really monotonous. Getting up and doing the same thing over and over again every day. Looking at the same items and devices all the time. I get bored of it.”

Taking a Plunge

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The shimmering blue water slowly began to emerge as I made my way up the highway, perfectly contrasted and coordinated at the same time with the bright blue sky above.

I manoeuvred into the right turn lane and made my way into the carpark, which was almost deserted on a Thursday afternoon. I grabbed my blue and white AMSL drawstring bag containing a towel, bottle of sunscreen, a dry shirt and glucose tabs.

My insulin pump was clipped to the inside of the pocket in my swim shorts, still running as per normal. My blood sugar was 9.3 before I left home. With 2 units of insulin left to act from lunch and some protein in play, I felt fairly confident to let it ride.

My comfy brown thongs with blue and red striped cotton straps came off as I buried my feet in the soft, white sand. I made my way closer to the shore line and perched my bag in the sand, setting up ship.

I disconnected my pump from the infusion site on my stomach and wrapped it up in the beach towel in my bag, not overly worried about insulin spoiling on that breezy thirty degree day. I slapped a load of sunscreen over my pale skin, recalling sore throbbing red marks of sunburn that were a painful reminder of previous non-compliant days in the sun.

The gentle wind whipped through my hair and burst onto my face. I could feel the refreshingly cold water hit my toes as I began to wade my way into the water. The salty sea spray hit my face as the waves crashed over the water and the bottom half of my body became submerged underneath it.

With the top half of my body feeling the cold of the sea spray, I took a plunge beneath the water.

As the waves pushed their way over me, crashed and then receded, with the sun shining brightly over the clear blue sky, I wasn’t thinking about diabetes. I wasn’t thinking about work. I wasn’t thinking about life.

I was drifting there, savouring the moment.

It felt good.

Rationality.

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One of the pastimes I am often found guilty of is trawling the interwebs for diabetes gear.

Managing diabetes day in and day out, can feel downright monotonous at times. Anything that helps to make me feel more excited about checking my blood sugar, treating a low, or more effectively delivering my insulin doses are all winners in my book. Being a guy, I’m constantly trying to make things as compact and easy as possible to travel with when I’m on the go.

But I’m also a really sensible person. A practical one as well, while I’m at it. I don’t like spending money on things that I don’t have a use for. I constantly weigh up whether my hard earned dollars could be better spent on things like test strips, pump consumables, paying bills or meeting the financial goals I’m working towards. And damn, diabetes gear can be so bloody expensive.

I’m a terrible decision maker, too. I’ll often hover over an item for long enough to be laughed at by my family, deliberating over whether I like it enough and whether it’ll be useful enough for the price tag attached to it. I’ll bring things home, and have a change of heart soon after, thinking about what I could have better put that money towards. I’m not just talking about diabetes gear anymore, either…

Another item I’ve been mulling over during Christmas is a fully fledged CGM. I was actually asked the question just a few days ago, when my rationality began pouring from my mouth. The cost of the transmitters, that send blood glucose data from the sensor to my iPhone or receiver, would be enough to purchase a year’s worth of FreeStyle Libre sensors. That money could also be put towards other essential stuff like health insurance, doctor’s visits, test strips, pump consumables, hypo treatments, batteries and insulin. Ditto to the question of overseas travel.

Yeah, I might be a rational person in nature. Yet still, I believe that living with diabetes is definitely one of the reasons as to why I am so rational. No matter how great a country I live in, how comfortable I am or how secure the roof feels over my head, part of my brain is always thinking about that rainy day that I hope I don’t ever have to face.

The Third Year.

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It would be difficult to find fault in 2017. It was an amazing, amazing year. In what certainly feels like the blink of an eye, a whole bunch of amazing things happened in the diabetes world.

In February, I ventured into a coffee house south of the river, where I met a group of total strangers with diabetes. Over the months that followed bonds were formed, some brilliant ideas were brought to the table, and events were held across Perth. A Young Adult Diabetes Committee quickly came to life.

It’s exciting to finally have something close to home that caters for young adults with diabetes, in the same way that kids and families have the Telethon Type 1 Family Centre. It wouldn’t have been possible without this group known as the YADC Legends, and of course the support of Perth Diabetes Care.

In April I attended Medtronic’s inaugural Diabetes Advocates Day in Melbourne, where I caught up with some new and familiar faces in the DOC. The day was over sooner than it began, but I was fortunate enough to hear some news on the progress of closed loop trials underway here in Australia. Hopefully this will pave the way for Medtronic’s 670G hybrid closed loop insulin pump, which communicates with CGM to regulate glucose levels, to hit our shores.

April also brought with it the announcement of the federal government subsidy of Continuous Glucose Monitors for those under the age of 21. It was a bittersweet announcement, because while it’s a win for kids and families, type 1 doesn’t magically disappear at the age of 21. It was also disappointing to hear that children in some age brackets would have to ‘prove’ their need for such a system, which is reminiscent of battles people face for health insurance coverage in the US.

Diabetes Blog Week rolled around again in May, which saw 100 diabetes bloggers answering a prompt each day for five days. It was my third year participating, and connecting with so many other people with diabetes from all over the world really reminded me of why I am a part of the Diabetes Online Community.

June presented me with an opportunity to join the team at Diabetes Daily as a freelance writer. This role has really challenged me, both as a writer and in thinking beyond my own perspective as someone living with diabetes. Massive thanks to Diabetes Daily for having this Aussie on the team!

Australia’s National Diabetes Week rolled around in July. While there were still some messages centred around complications, it was fantastic to see a theme that encouraged people to raise awareness of the signs and symptoms of diabetes. This is what diabetes week should be like, every year!

August began in Melbourne with Abbott’s second Diabetes Exchange event, following on from the initial event where the FreeStyle Libre was launched in 2016. Once again, the planning and execution of these two days was superb. It was extremely generous of Abbott to reconvene this group of bloggers together once again, continuing conversations that were able to go beyond the product itself. Thanks for making me feel so valued!

Later in the month, I was an invited speaker at the Roche Educators Day (RED). It extremely humbling to meet so many passionate diabetes educators who had given up their day to learn from us. I was also able to put faces to many healthcare professionals I had previously only interacted with through the DOC. Massive thank you to Roche for having consumers involved for the first time, and for making us feel so welcome!

At the end of August, I was able to tick the ADS-ADEA conference off my bucket list thanks to the generous sponsorship of Diabetes Australia. I was thrilled to be attending sessions and acting as a consumer reporter at an event largely attended by industry professionals. I also realised that we still have a long way to go in getting others to see the value of having consumers involved in these kinds of proceedings. Thank you to Diabetes Australia for pioneering this initiative, and to Renza, Ashley and Melinda for fantastic company!

October brought with it the news that Animas would cease the manufacture of the Vibe insulin pumps in the US, with a view to eventually exit the market globally. It’s sad to see choice taken away from people with diabetes, moreso here in Australia where we will eventually be left with only two options – Medtronic and Roche.

Fortunately, a new entrant hit the insulin pump market in Cellnovo! I was lucky enough to get a sneak peek at the Cellnovo system during the ADS-ADEA conference, before subsidised consumables finally became available through the NDSS in November.

December marked the end of weekly OzDOC chats on Tuesday nights. While it was bittersweet to see the space where I first found peer support online come to an end, the timing felt right.

As this little corner of the internet turns three, I just wanted to say a massive thank you for reading, commenting, getting in touch, Facebooking, Tweeting, talking to me or coming along to one event or another.

I continue to write and be involved in the diabetes space because of this resounding feeling of community that helps me not to feel so alone in all of this. You have all made my world a lot smaller today, and for that I am extremely grateful.

I’m not sure what 2018 has in store for me, but it sure does have big shoes to fill.

Wishing you a very Happy and prosperous New Year.

– Frank

Why We Need to Stop Asking People If Their Diabetes Is Controlled

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In my latest column for Diabetes Daily, I’m talking about why I think this question is setting people with diabetes up for failure.

“I absolutely hate being asked how controlled my diabetes is. How on earth can such a complex condition be explained in a yes or no question? If a healthcare professional expects me to evaluate my diabetes management with a one-word answer, then they are setting me up for failure. It’s like asking me if I completed the marathon last week, without showing any interest in the journey or preparation that I undertook to get myself past the finish line.

When I think about control in the context of managing diabetes, I interpret it as keeping my blood sugar levels between 4 and 8 mmol/L all of the time. That’s simply far too rigid of a goal for me.”

You can check out the full column at Diabetes Daily here.