Where to From Here?

It’s easy to feel a sense of urgency when it comes to living with diabetes. It’s only our long term health that’s on the line, after all.

When I started using a pump, it felt like somewhat of a lifeline for my lousily-managed diabetes at the time. I felt this enormous sense of urgency to finally get it right.

I’ve since felt that sense of urgency even moreso, thanks to being surrounded by so many other peers who are managing their diabetes in so many different ways. One such example is the hype around Continuous Glucose Monitoring technology, and all of the possibilities that it can lead to in managing diabetes.

But that urgency has also been met with hesitation. I don’t like to think of myself as indecisive, but I definitely like to make a very well thought out and rational decision. The costs, both material and otherwise, of getting diabetes technology set up. Whether the effort required to set up and learn something new will be worth the reward.

I’ve definitely found myself mentally saying the words ‘I really can’t be bothered’ when it comes to the prospect of trying new tools or technologies this year. Namely, my short lived road trip with Fiasp insulin. Also in part due to a busy year of study and actually being happy with the kit I’m using.

One thing that nobody told me when it comes to diabetes technology, or any new regime in diabetes management, is that I have time. There’s definitely no hurry to jump into something new. There’s no hurry to get to that point of where I want to be with a new treatment or piece of technology. The worst thing that can happen is that I’ll go back to what I was using before.

When I bit the bullet back in September and arranged the gear that I needed to get set up with a Dexcom CGM, I had no other expectations of myself other than to give it a go. To see if it would be feasible for me to use, and whether it would add value to my quality of life. There were no timeframes, no goals, and no where-to-from-here plans set in concrete.

This kind of dawned on me yesterday afternoon, as I realised just how much I had learned about the system after almost three months of…learning to use it. I couldn’t have done this if I hadn’t been patient with my expectations and allowed myself the time to do so. Maybe more on that another day.

I really don’t know what my where-to-from-here is, or if there even is one. But if there’s one thing I’ve learned, it’s that there is no rush in getting there.

What’s Not on My Christmas Wish List

Hello, December. The silly season is in full swing, and no doubt almost every place, business or shop window you can think of will be adopting somewhat of a festive theme. In anticipation of all of the newsletters, articles, social media posts, well meaning relatives and other diabetes interactions that I’m likely to encounter over the coming weeks, I can already tell you what’s not on my Christmas wish list this year. Or any other year, for that matter.

I don’t need to be reminded that I have diabetes at this time of the year. That’s pretty much a fact that isn’t going to change until the cure arrives in another five years time. I do diabetes every other day of the year on my own through rain, hail and shine, so I hardly think that Christmas is worthy of any extra attention.

I don’t want to see any ‘helpful’ and highly unsolicited advice on how to manage my diabetes over the Christmas season, no matter how well intended it is. I don’t need suggestions of what I should and shouldn’t be eating throughout the festive season, or advice on how to keep my blood sugars in tow. If I require some assistance in that department, I’m more than capable of asking. Otherwise, please treat me like any other guest.

I don’t need to be shamed for any of the food choices that I may choose to indulge in on Christmas Day (or any other day of the year, for that matter). Please, resist the temptation to ask a person with diabetes how they manage their blood sugars at the dinner table. Rather, an acknowledgement that I do this on the other 364 nights of the year that I’m not eating dinner at your house would go a long, long way.

I don’t need insinuations that just because I tuck into the likes of chocolate, pavlova or potatoes, I’m not taking care of myself. I take a great deal of care in managing my diabetes year round, and to be honest I’m damn proud of those efforts. I refuse to be made to feel that guilty for numbers that may fall outside of my target range during a time where I just want to be Merry. Nor do I need to explain! Besides, what makes you think that a slice of pavlova is any less healthy for me than it is for you?

I really don’t care how the likes of diabetes organisations, diabetes websites, healthcare professionals, other people with diabetes, or support people for that matter, feel that I should be managing my diabetes over the festive season.

The way I choose to manage my diabetes is, quite frankly, nobody’s business but mine.

At the end of a long year, I look forward to Christmas and the ability to wind down after a long year and spend some quality time with my loved ones.

Diabetes is most definitely not the focus of that.

Never Underestimate Your Impact

Living with diabetes can be pretty damn isolating. One thing I would have to concur with, after almost a decade at the helm of this ship, is that it often feels as though I am talking to myself.

I write this blog mostly for myself, and as a way to connect with the diabetes community. It’s mostly read by, I’m assuming, people with diabetes or those with a connection to diabetes. A lot of the conversations about diabetes that happen online or in person are primarily among people with diabetes. I am, mostly, preaching to the converted.

Diabetes doesn’t define me, but it is a big part of me. Outside of this blog, I would like to think that my real contribution to awareness of diabetes comes from simply sharing the diabetes bits alongside the other stuff.

Many people around me, who see me everyday, know that I have diabetes. I’ve explained the mechanics of how I live with my condition to a lot of these people. Many times. So when you’re continually asked the same questions, by the same people who’ve asked them already, it’s pretty easy to feel somewhat like I am talking to myself. That my efforts to raise awareness of diabetes, among the people who really need to hear those messages, are for nothing.

That was, up until a good couple of weeks ago.

After catching up with a group of people whom I went to high school with, I was absolutely blown away by how many people told me that they had taken notice of some of the things that I had been involved in around diabetes (Perhaps aided by my star studded appearance in the newspaper last year…)

The absolute highlight of this night was when a friend was asking me how I knew that I had diabetes. As I started to recall the ‘four Ts’ of type 1 diabetes (which is actually super easy to explain – thanks Diabetes Australia!), she actually stopped me and said that she knew all about them! No doubt thanks to my sharing of the National Diabetes Week campaign.

I haven’t really ‘done’ diabetes awareness month this year, partly due to being consumed with exam revision, but also because every month of the year is diabetes awareness month.

However, I guess on the final day of November I thought it would be fitting to say that your impact is bigger than you think. Even if you don’t have many followers, even if only one person reads your post, even if don’t receive any reactions or feedback from the people around you, never underestimate your impact.

On the final day of diabetes awareness month, I couldn’t think of a better reason to continue raising awareness of diabetes.

Why Only A1C?

Over the past couple of weeks, a few ‘sponsored’ posts from Diabetes NSW and ACT have popped up in my social media feeds in relation to a campaign that’s currently running. This campaign, which is also sponsored by Novo Nordisk, is calling on us to ‘know the numbers’ in order to make better decisions around our diabetes management.

I am all for knowing my numbers. I absolutely love being able to monitor my blood glucose levels frequently, whether that be through test strips, FreeStyle Libre or Dexcom sensors. I love all of the added insight that blood glucose data gives me in order to make more effective decisions around my diabetes and my activity. I honestly could not live without it.

It’s just a shame that the only number that’s receiving any attention through this campaign is the hba1c.

Hba1c is essentially a three month average drawn from some of the glucose that attaches to the red blood cells. The campaign website claims that:

“Even if you check your blood glucose levels several times a day you may miss the highest and lowest points. The HbA1c test is an average so it will capture all of the highs and lows.”

I’m not actually sure how the hba1c can capture all of the highs and lows that a person with diabetes chalks up. When you’re averaging out numbers, you’re essentially masking all of those high and low points into one potentially very attractive looking number.

As a person who has lived with type 1 diabetes for almost a decade, I have personally found that the hba1c test in no way adequately captures the magnitude of my highs and lows.

If I need any further evidence of this being so, I need look no further than last week where I was chatting with someone who could have been telling my own story. Satisfactory hba1c, with levels that were bouncing between 2 and 20, while the healthcare professional was none the wiser and had no reason to offer additional support.

Admittedly, I cannot adequately understand the usefulness of the hba1c result to someone living with type 2 diabetes. Or, someone who doesn’t use insulin and isn’t subject to the same glycemic variability that I am accustomed to. Especially in light of the restrictions on access to subsidised test strips through the NDSS, perhaps hba1c is a useful tool here.

I’m not trying to take away from the hba1c result. I guess from my perspective, I’m just tired of every single allied healthcare professional judging my diabetes in the sole basis of one number. The hba1c. We don’t need to be raising the profile of the hba1c. For a healthcare professional, it seems to be almost synonymous with diabetes. So, in that respect, it’s disappointing to see this being in the best interests of a diabetes organisation and the consumers that they are representing.

Why not ask me about average glucose levels? The standard deviation of those results? Or my time in range, if I am wearing a CGM. Or even how I’m feeling about my diabetes, and more broadly?

These are all measures that have far more meaning, and better reflect the day to day management of my diabetes than the hba1c test ever could.

Not So Invisible

“I have type 1 diabetes and I use an insulin pump which should be covered under my policy. I’ve just received a letter stating that my warranty will expire in March next year, and just want to make sure that a replacement one will be covered.”

“Insulin pump. Insulin pump, insulin pump.” I was waiting for a while as the gentleman I was on the phone with searched through the finer details of my policy. As he began reading out a list of things that were covered under my policy, I was convinced he had no idea what he was doing.

“I just want to make sure I get the right information for you. I know about insulin pumps because my daughter was diagnosed with type 1 diabetes at the age of nine.

“Small world!” I replied.

She refuses to go onto an insulin pump. She’s quite happy doing lots of injections of Novorapid.

“Well, there’s no right or wrong way when it comes to managing diabetes. So long as she’s happy.”

Is it well controlled? Are you doing all right with it?

“Not every day is perfect. But I’m happy with how I’m doing. The pump and CGM have been life changing for me.”

For so many years, diabetes felt like an incredibly isolating condition to live with. I rarely acknowledged it, rarely felt comfortable with it, nor did I know a single other person with it. I felt like nobody could see my diabetes, nor did I even contemplate the possibility of there being other people out there who were just like me.

Today, even in a world of knowledge and connection, these moments of diabetes in the wild don’t seem all that difficult to find.

As it turns out, I probably just wasn’t looking hard enough.