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.

Earlier this week, I was finally able to put a face to someone whom I’d only ever known through the DOC. This person was probably one of the very first people I’d connected with when I first started writing here on my blog a few years ago. Despite living in the same city and perhaps being in some similar circles, we hadn’t quite been in the same place at the same time up until now.

He very generously gave up his time to speak to myself and fellow Young Adult Diabetes Committee members, sharing his own story of a flexible diabetes management regime that suited his lifestyle. One part of this was a DIY closed loop system.

I listened intently as he explained the ins and outs of this system, watching his blood sugar rise ever so slightly while the system automatically delivered micro boluses to correct. When question time rolled around, I asked him what sort of time commitment was involved in setting up such a complex system like his.

He told us about the many different online communities there were available to support him in setting up this system. About the ‘build parties’ where groups of like minded people got together to learn off of each other. How he was happy to accept messages and offer support to people who might be thinking about building a similar system.

‘It’s much easier when you have the community to help you’ were his exact words.

This really has nothing to do with DIY closed loop. So please don’t ask me questions, because I would hardly be able to answer them. But my new friend’s sentiments could be equally applicable to almost any subset or interest group within the diabetes community.

The diabetes community supports each other 24 hours a day. Whether it be through Facebook groups, Tweet chats, information sharing, storytelling or meeting up in person, this community is truly one of the most genuine things that I know of.

I mean, why else would you meet up with a total stranger from the other side of the world who’s been backpacking through Australia? Or tell someone you barely know that they can come to your door to borrow some much needed diabetes gear?

For the most part, we don’t do it to get famous or build followings or make money. We do it because we genuinely want to feel connected, informed and supported – and we want our peers to feel exactly the same as we do.

If you’ve been paying attention to National Diabetes Week, you’ve undoubtedly heard about the four ‘T’s of diabetes. Being tired, toilet, thirsty and thinner. However, I still think that there’s a ‘T’ missing from those four.

It’s not necessarily a symptom of diabetes like the other four ‘Ts.’ But to me it’s something that’s synonymous with diabetes. I can’t think about diabetes and not be reminded of this word. A word that’s been so life changing and such a vital ingredient in being able to cope with a complex condition so well.

For me personally, that fifth ‘T’ of diabetes would undoubtedly have to be the word ‘tribe.’

As the old saying goes, find your tribe and love them hard.

They really do make diabetes suck a lot less.

Growing up in an Italian family, food was a big focal point in our house. Food was something that brought us together as a family – whether that be birthdays, Christmases, Easters or Sunday dinners. Both of my Nonnas would always put food in front of us when we went to visit. When family gatherings were being planned, the focal point tended to be around whether there would be enough food to feed everyone, followed by days of eating leftovers. It’s not uncommon to be force fed food and drinks at family get togethers. If you don’t want to eat, you must be feeling unwell. Obviously.

Then, along came diabetes. All of a sudden, every single item of food that I once enjoyed had an impact on my blood sugar. I linked every undesirable number that popped up on my meter back to what I’d eaten earlier. I began to think of food as ‘good’ and ‘bad.’ ‘Good’ eating meant having the willpower to eat less and enjoy better blood glucose levels but feel far too hungry. ‘Bad’ eating meant overindulging in those treat foods that I once enjoyed, and feeling the guilt afterwards.

Throw in all of the diabetes websites and magazines and food police who made me think that I was doing something wrong because I was not eating a low carb, paleo, vegetarian, vegan, ketogenic, wholegrain or cardboard diet, and it’s easy to see why I developed such a complex relationship with food.

I was rather surprised to hear my daily carbohydrate totals from my diabetes educator as she looked through my Diasend report last week. I guess I was surprised because I don’t realise just how much confidence I have gained around food in the past 12-18 months. I no longer obsess over those kinds of things anymore.

Managing blood sugars around food isn’t necessarily the easiest thing, and getting to where I am today has taken a lot of time, patience and practice. I personally don’t think that kind of learning can be avoided, whichever eating plan you decide works best for you.

I prepare a great chunk of my meals at home, try to eat as much ‘real’ food as possible and minimise the processed stuff. But at the same time, life’s too short not to eat the cannoli. For me personally, I eat carbs. A lot of them, actually. As someone with a very active job and high energy requirements each day, I don’t realistically think I’d be able to meet those energy needs without some carbs in my diet.

I guess the biggest shift in my mindset over the past 12-18 months is that food is not something that I should abstain from. Food is something that I need in order to fuel my body, sustain my daily activity level, and to feel physically good about myself. Food allows me to function at my best each day. Food is ingrained in my culture, and something that I truly do enjoy.

Above all, food is something that I eat to please myself, and not others.

Not too long ago, a friend of mine was telling me about a member of her family. The family member in question was going to the doctor to get some blood tests done, because all he seemed to do was sleep. She went on to tell me that she thought that he might be diabetic, thanks to a friend of the family who had gone through the same thing.

I began to ask my friend if the person in question was thirsty. He was indeed. He was going to the toilet quite often, as well. She went on to tell me that his eating habits weren’t great either, particularly as he had a tendency to snack late at night.

A few days later, the person in question was told he had type 2 diabetes by his GP. I believe he was prescribed some oral medication to take daily. When I politely asked what the GP had said to him, it was exactly what I expected to hear.

“Lose weight, exercise, and cut back on your portions.”

It’s not the first time I’ve heard a recount like this one. GP’s don’t know enough about diabetes. To be completely honest, I don’t expect them to. But there are allied healthcare professionals who do specialise in diabetes. Their services are free in public hospitals to people with a Medicare card, and accessible through something as simple as a GP’s referral. Yet the vague, unhelpful and judgemental guidance being given is setting people up to fail.

I tried to explain to my friend the body was producing insulin, the hormone that regulates blood sugar levels, but was having a little trouble using it properly. I tried to explain that blood glucose levels typically rise after eating, and that they need time to fall back into range again after eating before starting again.

I politely asked if they’d been referred to a diabetes hospital clinic, and went on to explain that there was more customised diabetes support available for free if they needed it. I also asked if they would like one of the spare blood glucose meters I had sitting in my wardrobe at home.

Earlier this week I showed my friend how to use the meter, and laughed as she shuddered at the sight of me applying my own blood to the test strip (with my own lancing device, of course). I explained that a target of between 4 and 8 was ideal, and that mornings were a good indicator of progress as our bodies have typically been fasting overnight. I told her that if they wanted more strips in future, they could see their GP about registering with the National Diabetes Services Scheme. And I told her that I was happy to answer any questions they had.

For someone new to diabetes, I’m sure that this was a lot of information. I have no idea how much of it will stick. Or whether they will use that meter. Or how they will deal with this new diagnosis. But I don’t think that I will ask again.

The way we each deal with our diagnosis is extremely unique. We go through a range of emotions. Sadness, frustration, isolation, shame and even denial. We need time and space. Some of us might not want to know anything about diabetes, while others may feel ready to jump in and immerse themselves into this strange new world. As much as I would like to see people err toward the latter, it has to be on their own terms. Not mine.