Month: July 2018

The Real Deal.

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I poured some dry packet mix into a mixing bowl on Sunday afternoon.

I added an egg and 40 grams of melted butter to the bowl, stirring it together with my wooden spoon watching it all combine together.

I scooped up little balls of this moist brown mixture, placing it carefully onto my baking tray 2cm apart. As I began to divvy up the remaining mixture among the 15 balls on my tray, my hands were beginning to feel sticky.

I had no temptation to lick any of the residual mixture that was stuck to my hands. I wasn’t even tempted to grab a small spoon from the kitchen drawer and devour all of the residual mixture stuck to the sides of the bowl.

As I opened the door to check on my creation that was baking away in the oven, there was absolutely no sweet aroma wafting its way towards my nostrils.

I kept poking and prodding at my browning vanilla almond biscuits, thinking that they felt far too soft for biscuits. After pulling them out of the oven and letting them cool for 15 minutes, they were still yet to harden despite having exceeded the cooking time. After putting them back into the oven for another ten minutes, I felt that I was at risk of burning them and switched it off.

As I later placed my cooled biscuits-that-didn’t-feel-like-biscuits into an airtight container, I was not even inclined to break one of these biscuits in half to taste. I sealed the lid and placed the container into my bag for the following day.

When I arrived at Monday evening’s meeting with my fellow Young Adult Diabetes Committee members, I placed the container of biscuits on the table. Despite watching my peers eat these biscuits and tell me that they were good, I didn’t really want one. Even knowing that the 1g carb count per biscuit would have minimal impact on my blood sugar couldn’t tempt me.

These vanilla almond biscuits that I had spent my Sunday afternoon baking were sugar free, sweetened with what I believed to be Stevia.

If this kind of baking is what you choose to do in managing your diabetes, then I completely support and respect you for doing so.

But if I am being absolutely honest, for me personally, low carb baking does not come anywhere close to the real deal.

I would much rather have those sweet smells wafting through my kitchen, lick my fingers clean, scoop residual doughy mixture from the side of my bowl, break a hot cookie in half, have the real taste of sugar on my tongue, swag bolus some insulin through it all and correct a high blood sugar afterwards.

Tribe Vibes.

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Walking into the Telethon Type 1 Diabetes Family Centre on Thursday night, I was expecting to see a bunch of 20 to 30 year olds gathered for the Community Forum.

I couldn’t have been more wrong.

Not only did I see young adults, but there were also teenagers, parents, right through to older adults (who I tend to naturally gravitate towards as a pretty mature minded person).

The Family Centre is a place to connect and support people living with type 1 diabetes in Western Australia. As the name suggests, this is a place not only for the person with type 1 diabetes, but also their family and support people.

The Centre was built on land donated by the State Government, with funding from both Lotterywest and children’s charity Telethon.

I’ve been following the Family Centre’s journey through Facebook and their monthly ‘blue balloon’ newsletter, with nothing but praise for their person centred approach to delivering clinical and social services to children and teens living with type 1 diabetes in Western Australia.

This, of course, is largely due to the centre being driven by people with a strong connection to type 1. The incredible show of community support that this place has gained in such a short space of time is a testament to them.

I first met CEO Bec Johnson, who lives with type 1 diabetes herself, two years ago when the centre was still fairly new and catering primarily to children and teens. You can check out my tour of the Centre here. One of the standout sessions at last year’s ADS-ADEA conference was hearing Bec speak about how she utilised the online networks that had once been her lifeline in building a service that the community wanted.

The Family Centre are now in the early stages of expanding their service to adults living with type 1 diabetes in Western Australia, with the purpose of Thursday’s Community Forum being to gather input into what we would like to see in an adult service. (If you have any suggestions, please do feel free to drop them into the comments).

I spend far too much time in the company of like-minded people. When I think about type 1 diabetes, I am definitely guilty of assuming that everyone is like me.

Hearing the diversity of experiences being shared, I couldn’t help but be reminded that not everyone has had the largely positive experience that I have. One of the challenges of this forum was translating people’s personal experiences and frustrations into their ideal support service.

Sitting in a room full of such diverse ages, I also couldn’t help but be reminded that type 1 diabetes will be with me for the rest of my life.

More choice for people with diabetes is always a good thing. I think it’s fantastic that adults living with type 1 in Western Australia now have another service and social space to support them in managing their diabetes.

If you search for ‘Type 1 Family Centre Adults Community’ on Facebook, you’ll find a newly launched closed Facebook group for Western Australians to seek peer support. I’m sure there’ll be more exciting developments announced over the coming months.

I was definitely feeling tribe vibes.

(and I take absolutely no credit for that term, or the title of this post).

“You Have Very Poor Control.”

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“You have very poor control.”

No mention of how I was feeling after my first couple of weeks living with a demanding chronic illness that would affect me for the rest of my life.

No mention of how my family, friends, peers, work and uni were treating me in the aftermath of my diagnosis.

No mention of how I was handling the insulin injections, finger pricks, food, physical activity, hypos, hypers and stigma of living with diabetes.

After a quick flick through my diabetes logbook charting some less than ideal blood glucose levels, I walked out of my very first endocrinologist appointment eight years ago on the verge of tears. This endo had clearly spent more time with his head buried inside a textbook than he had in the real world, and I was left feeling very little empathy for what I had been going through.

Despite several weeks of learning about diabetes under the wing of a very supportive diabetes educator, it took just one ten minute consult with that endo to undo what I believed was some solid progress in managing my diabetes.

That is exactly the reason why the language we use when talking about diabetes is so damn important to me.

I’m insulted when people think that this issue is about nothing more than political correctness over the phrase ‘diabetic’ or ‘person with diabetes.’ I honestly couldn’t care less which of these words you prefer to use. What I do care about is how your choice of words, sentences, body language and attitudes could impact others.

My diabetes educator could read my face the minute I stepped out into the hallway, and knew that something wasn’t quite right.

I tried to laugh it off. I told her that I hadn’t taken too much of what that endo had said to heart.

But man, those words hurt. They still hurt today.

Being mindful of language is about more than just being polite or trying not to offend someone with your choice of words.

The language we use when talking about diabetes has the power to create reality.

You can also check out my five reasons to be mindful of language when talking about diabetes in my latest column for Diabetes Daily.

And commit Diabetes Australia’s Position Statement on Language to memory!

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.