My Diabetes Backup Plan

In those first couple of years after I was diagnosed, I didn’t have much of a diabetes backup plan.

I’ve eaten into my lunch at times where I was low at work without any jellybeans on hand. My pen’s ran out of insulin, leaving me unable to give a sufficient bolus for my lunch. A quick trip to the Chemist was in order when I reached the end of my multiclix lancet.

On occasion, Mum and Dad have run infusion sets and insulin to work when my kit has failed on me. I found myself desperately searching for some kind of convenience store when I was low on The Rocks in Sydney. There was even a time where I’d boarded a ferry to Rottnest Island, only to discover my insulin was running extremely low!

The one good thing about having each of these things happen to me over time, is that I’ve learned not to (intentionally) let it happen again.

Today, my rule of thumb as to how much I carry depends on how far away from home I’m going. As well as how long I’ll be away for.

Diabetes Backup Plan

For a short walk around the block or a quick trip to the shops, I would most likely carry a tube of glucose tabs in my pocket and rely on my iPhone for blood glucose readings from my Dexcom. Prior to having CGM, I also carried a meter, lancing device and strips with me.

When I’m going to work for the day, I carry my grey pencil case which houses almost everything I need. An infusion set, insulin cartridge, blood glucose meter and batteries. Jacket pockets or the car are also great at providing a little more freedom on the go. Provided it’s not parked in the sun!

If my pump fails, my primary backup plan is rapid acting insulin which I carry around with me in my NovoPen. And a few needles. I think it’s a bit wasteful to carry Lantus around in the 0.01% chance that I have to use it. However I do rest easy knowing there is a box sitting in my fridge at home should I need it.

I definitely found it hard to accept being dependent on so much gear after my diagnosis. However the diabetes community have definitely helped to make the concept of carrying my kit around a little more ‘trendy.’ There are so many awesome accessories around to help make diabetes that little bit ‘cooler’ and that little bit less monotonous.

Not to mention that you tend to get a little bit wiser, the older you get.

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.