Author: Frank

Replicating the Good Days

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At the moment, I’m trying to replicate days like these.

Rather than these.

I have whole weeks where my carb counting is spot on, insulin just ‘works’ and blood sugars are simply effortless to manage. There are less highs, and less lows. The stream of good blood sugars seem to have somewhat of a flow on effect, so long as I can keep the train on course.

Then there are the weeks where blood sugars simply do not want to co-operate with the maths. Blood sugars feel like a lot of effort to manage, because naturally the insulin doesn’t work as well when levels are out of range. The urge to rage bolus is real, ultimately leading to more lows, and more rebound highs. It feels much more difficult to get the train back onto the course, rather than simply keeping it on the course.

In the midst of trying to pinpoint things, this was yesterday’s discovery.

11.1 was the greeting that I received from my FreeStyle Libre sensor after breakfast yesterday. It’s not what I was expecting, given that I had woken up to a blood sugar of 6.2 and carb counted my eggs on toast and milky coffee.

I gave an additional unit of insulin, and decided against reducing my basal rate for a day on my feet at work until that stubborn high started to come down.

Normally, a one unit correction while ripping open pallets of bulky furniture would send me plummeting. Yesterday, I was lucky to nudge the top edge of my target range.

As I recalled the day prior, my blood sugar had also remained stubbornly in the 8s despite repeated corrections. After increasing my basal rate in the evening and avoiding every urge in my body to rage bolus, I slowly but surely landed back into range by bedtime. Only to find that the ascent had begun once again when I checked at 1am.

By this point, I knew what had happened. In fact, I was feeling like an idiot that I had not picked up on this sooner.

Perhaps not as terrible as the banana bread highs that spoiled insulin had given me last time, but spoiled enough to make my blood sugars noticeably more stubborn to manage than usual.

Tools and technologies are only as smart as the people using them.

By sharing some more bits of the daily grind here, I’m hoping to make myself a bit more accountable to replicate more of those good days.

Overflowing.

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Being diagnosed with diabetes as a young adult came with its own, unique set of challenges. I had lived a ‘normal’ life for 17 years, and then all of a sudden I had this new condition that I had to find a place for in my life.

Nobody around me knew that I had diabetes, and it was difficult to explain such a complex condition to the people around me. In some ways, it was just easier to deal with my diabetes in private rather than having to try and explain what I was doing in the middle of another frustrating high blood sugar.

Today, I think my diabetes is pretty visible. Whether I’m talking with the pump in my hand, checking my blood sugar in the inventory office at work as someone comes to interrupt me, or walking back out again crunching down glucose tabs.

It’s fair to say that I have a pretty big interest in diabetes today. I spend a lot of my spare time writing here, freelancing over at Diabetes Daily, posting about diabetes on my social media, attending community events, as well as being part of a diabetes Committee here in Perth.

“Are you going with the diabetes group?” is now a fairly standard response from colleagues when they hear that I’m taking annual leave from work.

“What are you doing?”

“What’s that?”

I spent so long imagining people’s reactions to a finger prick or an insulin injection. Today, it often feels like they simply don’t take any notice. Those explanations of the condition that I live with don’t seem to have any effect when the same questions pop up again and again. Perhaps others are just sparing my feelings by not asking me what I am doing.

However after National Diabetes Week, it finally began to feel like those messages of awareness were getting through to the people who needed to hear them the most.

The response to my diagnosis story that was shared on Diabetes WA’s Facebook page last Sunday was phenomenal. The story that appeared in The West Australian on Thursday was absolutely huge.

Despite my repeated arguments of just how terrible that photo was, two colleagues at work pulled the newspaper out of my hands on Thursday morning, took it over to the photocopier and stuck it on the staff room wall at work. “It’s a really important issue that could affect the people you work with!”

Doing media is a really big thing, even for an over sharer like myself, but I couldn’t be prouder of the outcome.

After a big week spent raising awareness of diabetes, and hearing stories shared from fellow people with diabetes, my cup is well and truly overflowing.

This is what National Diabetes Week is all about.

itsabouttime.org.au.

Kicking off Diabetes Week with some of my tribe last weekend.

That Time I Was In The Newspaper

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A few weeks ago, I agreed to be a media ambassador for Diabetes WA’s National Diabetes Week campaign. If you’ve been living under a rock this week, the campaign is calling on earlier detection of the signs and symptoms of diabetes.

Obviously the urgent and life threatening nature of type 1 diabetes is what picked the Editor’s interest the most, and I was told that The West Australian newspaper was interested in running a story. This is despite Diabetes WA’s media release providing equal attention to type 2 diabetes. (However, I do not know if the person with type 2 diabetes profiled in the release was prepared to do media).

The West Australian, in my opinion, are notoriously bad. The quality of journalism, in my opinion, is absolutely terrible. Unless you regard AFL footballers, Channel Seven personalities and Channel Seven television programs as news. The last diabetes article I read had the headline ‘cash strapped diabetic sufferers.’

So, it’s safe to say that I was feeling my fair share of nerves as I opened that newspaper to read how the story was covered yesterday morning.

I found out that The West were planning on running this story last Tuesday. The Editor left me a voice message late on Friday, which I promptly responded to with another voice message outlining my availability and willingness to chat. After a few SMS exchanges a day later, a photograph was arranged for Wednesday morning during Diabetes Research WA’s event for National Diabetes Week.

I was so looking forward to getting a professional photograph done, and jokingly told the photographer to make sure that I was smiling. I like to call myself Chandler Bing, because I always think that I am smiling during a photograph, only to see a very serious looking end result. I was also looking forward to getting a cheeky Instagram of me being photographed, and was bitterly disappointed to be told that I wasn’t allowed to.

We made our way across the road to the beautiful Lake Monger reserve, overlooking the city skyline and glorious Perth sunshine. Instead, the photographer placed me into the bushes, stuck a camera onto one of the trees and told me to walk toward him while looking sideways at this camera. I was then asked to go back and repeat the exercise, this time looking forward at him.

“Shouldn’t I be smiling?” I asked after realising that this was not a warm up exercise but the real thing.

“Isn’t this supposed to be a really serious story?” He replied.

After taking a few photos of me smiling, purely to humour me, our exercise was over.

As I made my way back toward the event I was attending, I expected that the Editor did not plan to ring me as she had said and that I would not have a chance to deliver some key messages on language.

I knew that I would have to get in touch with her and politely deliver the two key messages I had developed from some crowdsourcing during Tuesday night’s OzDOC chat, along with a copy of Diabetes Australia’s Position Statement on Language and Diabetes. I didn’t even care if my message didn’t get through, I only knew that I wouldn’t be able to live with myself if I hadn’t seized this chance to put my case forward.

As expected, I received a pointy email response back highlighting this Editor’s 25 years of medical writing experience. After somewhat defensively being told that terms such as ‘diabetic sufferers’ aren’t used, I had a suspicion that my message had gotten through.

Back to that moment where I was a bundle of nerves, flicking through the pages of that newspaper yesterday morning. Despite the serious photo, I couldn’t be prouder of the outcome.

‘Diabetic sufferer’ is nowhere to be found!

Hope.

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I don’t really have a great deal of faith in a cure for diabetes. I do believe that we have lost sight of curing diabetes. While technology may be exciting (case in point), every new entry onto the market merely seems to be a pathway to the next product or upgraded system in the pipeline. There does not seem to be an end goal of eliminating the need for these devices altogether and curing diabetes. Perhaps people like me are to blame for feeding this diabetes technology frenzy.

Yesterday, I had the pleasure of attending Diabetes Research Western Australia’s Exploring Diabetes Expo to hear about some of the latest and greatest diabetes research being funded in WA.

Of course, the best thing about attending events like these is connecting with new and familiar faces in the diabetes community here in Perth. I met someone who was looking for answers to better manage his type 2 diabetes. I overheard a father talking about his newly diagnosed type 1 daughter, attending to try and get on top of it. It was also great to catch up with a few familiar faces.

Being surrounded by supporters of diabetes research and people in the scientific community, I was reminded of my time at the ADS-ADEA conference last year, where the company of people with diabetes is not the norm. I really felt that some of these people could benefit from spending more time in the company of people with diabetes.

The highlight of my morning was hearing Professor Tim Jones, head of Endocrinology at Perth Children’s Hospital, speak about closed loop systems. Despite all of the advances in technology, blood glucose control hasn’t improved in the last five to ten years and only 20% of patients are meeting blood glucose targets.

My heart sank hearing Professor Jones tell the audience that reason for this is that type 1 diabetes is simply a hard condition to manage.

I have no doubt that type 1 diabetes is a difficult condition to manage. But equally, I feel that clinics are under resourced and people fall through the cracks, unable to reach their full potential. One fabulous person with diabetes in attendance lamented her frustration at having to hear about new technologies through peers, rather than her healthcare professionals. Another friend in attendance lamented that the public system has little to be desired with it’s very long waiting periods.

The morning also introduced us to some awesome Artificial Intelligence retinopathy screening, which I’m not quite sure differed too much from that of an Ophthalmologist or even an Optometry screening.

There were also sugar free cupcakes, a coffee van and a great view of Lake Monger on a glorious Winter day.

Admittedly, diabetes research is not something that I can get excited about. Not like I do with the tech. But if there is one person that gives me hope in a cure for diabetes, it is Sherl Westlund, director of Diabetes Research WA. Sherl’s passion for the research grants her organisation provides gives me a glimmer of hope that we will find a cure for diabetes, hopefully in my lifetime.

If there’s one thing that I really do need, it’s hope.

Its About Time…To Raise Awareness of Diabetes!

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This week, I’ve been lending my voice to Diabetes Australia’s National Diabetes Week campaign that is calling on earlier detection of both types of diabetes. It is a campaign that I am really, really proud to support.

As a person living with diabetes, previous campaigns have been difficult to stomach. They’ve often focussed purely on the serious side to diabetes. While these campaigns understandably carry a political agenda for things like greater funding and improved outcomes for people with diabetes, they often lack one crucial element. Audience participation from people with diabetes.

People with diabetes want nothing more than to raise awareness of diabetes during diabetes week. What I love so much about this year’s ‘Its About Time’ campaign (and last year’s, for that matter), is that it hits the right balance of seriousness while also encouraging those of us living with diabetes to raise our voices and promote greater awareness of diabetes.

The type 2 campaign launched on Sunday, calling on everyone at risk to get their diabetes screenings, regular bloodwork and checkups with GPs. This is especially true for those over the age of 40, those who may have a family history of diabetes, those with a waist measurement of over 40 inches and many others. If you know someone who might be at risk, encourage them to get their diabetes screening! There’s also a free calculator that will help you to assess your diabetes risk here.

People can live with type 2 diabetes for up to seven years before it is diagnosed. The onset of symptoms are relatively slow compared to type 1, and many people still feel normal until the condition has progressed further and complications may have developed. Most of these complications would be preventable with earlier detection.

The type 1 campaign launched today, calling on everyone to know the four ‘Ts’ of type 1 diabetes – Tired, Toilet, Thirsty and Thinner. 1 in 5 people are still presenting to hospital in a life threatening state of Diabetic Ketoacidosis (DKA) before being diagnosed with type 1. DKA and hospital admissions could be prevented with earlier detection of the four Ts from both our peers and our healthcare professionals.

One common argument that I see in the diabetes community, and one that I’ve certainly been guilty of in the past, is that type 2 diabetes takes focus away from type 1.

I see this campaign as something that brings the whole diabetes community together.

I think we can all agree that no matter the type of diabetes we have, we would all benefit from earlier detection. However we were diagnosed, I think many of us would still be able to find something small that could have been done better through a greater awareness of those signs and symptoms.

I truly believe that Diabetes Australia are doing a fantastic job at championing people with diabetes. Perhaps I am slightly biased as I have been involved with them in the past, but I truly believe that this is a brilliant campaign.

Let’s shout diabetes awareness to the rooftops!

Fellow people with diabetes, this is our week!