Staying in Range While I Sleep.

When I first started using CGM in September this year, one of the features I was most looking forward to having was glucose alerts while I slept.

I’ll be honest. Of all the times of day, night time is by far one of the most difficult times of day to navigate. There’s the after effects of more variable evening meals in play, not to mention dawn phenomenon kicking in and causing a surge in BGLs in the wee hours. To this day, I still look at my blood glucose graphs and struggle to identify overnight patterns because they can vary so much from day to day.

There would be mornings where I’d wake up to the realisation that I hadn’t stirred in the night and checked my blood sugar. Some mornings, I’d be saying thank goodness! to a number between 4 and 8. But there were, equally, other mornings where I would be ridden with guilt seeing a number of 9 or 10 on my meter that I’d most likely been sporting for the majority of the night. Not to mention how difficult diabetes can be when you start your day out of range.

CGM has definitely been enlightening for me in those wee hours of the night while I sleep. One of the first things I quickly picked up on was that my elevated basal rate to combat dawn phenomenon, which usually kicks in at 1am, is now needed pretty much as soon as I fall asleep. How did I not pick up on that sooner!

It’s also nice being able to rest my head on the pillow without hoping I’ll wake up in the middle of the night to check my blood sugar, knowing that my CGM will alert me if my diabetes needs my attention. So far, the alerts are pretty hard to sleep over. They continue to sound, getting progressively louder, until I open the app on my phone to silence it. I also have my phone alert set to ‘vibrate while silent,’ which is another added noise to wake me up.

I originally had my low alert set to 3.9mmol. The problem with that is, I have a tendency not to treat my hypos as promptly as I should. Part of that is that I absolutely hate my orange glucose tabs. But hey, hypo treatments aren’t supposed to be nice, right? Sometimes I attempt to suspend my way out of a low, or am too busy that I just forget. I’ve recently reverted to the system’s default 4.4mmol low alert, and I’m really liking it. Instead of thinking oh crap I’m low!, I’m pleasantly surprised when I realise that I’m not actually low yet and have a bit of a buffer to ward it off.

My high threshold has been at around 9mmol for quite a long time. This actually pre-dates my CGM life. That’s been a realistic target range for me to aim for, and I felt that anything tighter than that was going to lead to me doing more harm than good. But, over time as I’ve gotten better at diabetes, I’ve comfortably lowered that to my current threshold of 8mmol. My blood sugar still does go above 8 from time to time, particularly after I eat, but that alert is still a nice reminder for me during busy days where blood sugars might not get my attention.

As I’ve become more comfortable with my overnight numbers, I have become more aggressive with my blood glucose targets while I sleep. Before I go to bed, I shift my high alert from 8 to 7mmol. I also turn on the setting to ‘repeat’ the alert every hour while high. This way, in the event that a high blood sugar doesn’t go down after I’ve silenced the alert and taken action, I will be alerted again.

For me, hands down the best thing about using CGM is that I no longer wake up with dread wondering what my blood sugar is.

I can honestly say that since I have started CGM, I have seen some of my best ever numbers while I sleep. While a well tuned basal rate is definitely a big factor in this department, I see CGM as an added layer of security that ensures I get my diabetes started on the best foot for the day.

With so many variables in play overnight, CGM ensures that I wake up between 4 and 7mmol almost every morning. I can wake up almost every morning knowing that my blood glucose is fine, or else my CGM would have alerted me otherwise. That still feels somewhat surreal.

That’s exactly why this technology needs to be accessible and affordable to every person with diabetes who wishes to pursue it.

(Even though I’m sporting a rebatteried transmitter, and stretching my sensor life far beyond its limits, I still acknowledge my privilege in being able to do so).

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.