Five Lessons From Five Years of Diabetes Blogging

It’s hard to believe that it’s been five years since I summoned the courage to hit ‘publish’ on my first blog post five years ago. I had absolutely no idea what I was doing at the time, or what kind of purpose this blog would serve. In total honesty, I never thought this would last longer than a week or two.

Yet here I am today, five life changing years later and a great deal wiser.

Writing about diabetes is a lot easier than I once thought. When diabetes is a part of your life 24 hours, 7 days a week, 365 days of the year, there’s no shortage of material to share here. It’s pretty easy to flesh out the tiniest thing. Like that low blood sugar that hit me this afternoon, or the stray test strip that I found on the floor of my hotel room.

Writing about diabetes has also been hard. Moreso than ever during the past year. Life, and taking care of myself definitely comes first and I’ll never apologise for that. But I’d be lying if I said that I don’t have this ever growing feeling of looking behind my back, waiting for someone to get angry at something I’ve shared here. Wondering if what I’ve written is even worth sharing.

I don’t have to be doing exactly what everyone else is doing. I’m still here, blogging, and doing it somewhat old-school, because this is the platform that is…me. Diabetes bloggers have largely migrated to Instagram these days, but at this point in time that’s just not me. Posting my landscapes and Cannoli feels far more natural than posing with my Dexcom, pump or pen.

I don’t have to be here, or anywhere else within the DOC, all the time. It’s easy to feel somewhat obligated to post and participate when there are so many corners within the DOC that are active 24 hours a day. Taking care of myself comes first and foremost. I’ve actually just spent 95% of the post Christmas period logged out of social media. With the exception of Twitter for news on the bushfires here in Australia. I always want my interactions to be fun and not forced. I always want to participate only in those spaces that I feel most comfortable in.

Peer support is truly life changing. I acknowledge just how much privilege I have had in being able to build such a great tribe of people with diabetes around me. I still think about where I would be in my life with diabetes today if I had not found such amazing peer support from the DOC and broader diabetes community. I don’t think I want to know the answer to that question.

Managing My Diabetes Over Christmas

There are people in the diabetes community who have found plenty of alternatives that they find are easier on blood sugars at this time of the year.

Then there are people like me, who could be found scooping the residual chocolate out of the mixing bowl from the Malteasers cupcakes I baked over the weekend for a family get together.

This may be an unpopular opinion to some, but I’d personally take the real deal over the alternatives any day. I don’t personally feel the need to place any dietary restrictions upon myself at this point in time, let alone at Christmas. Nor do I think that in doing so I need to sacrifice decent blood sugars.

That being said, Christmas is somewhat trickier to navigate when I’m balancing blood sugars, insulin and a lot more food than normal. I’ve definitely endured my fair share of Christmases where I’ve been left dealing with the aftermath for several hours, if not days, afterward.

One thing I’ve noticed is that the after effects of larger Christmas meals on blood sugars are often delayed and sustained as the fat, protein and excess carbs take longer to digest.

So my main approach to the Christmas smorgasbord is remembering that I don’t have to try everything just for the sake of doing so. I’d rather just pick a few things that I know I’ll truly enjoy, and avoid leaving the table feeling sleepy and ‘stuffed.’ Which really isn’t good for anyone, diabetes or not.

The one thing at the forefront of my mind is that I don’t like having to endure a night full of sweating and uncomfortable sleep, whilst battling stubborn high blood sugars. Which again, isn’t good for anyone, diabetes or no diabetes.

I’ll probably make a generous estimate of the carbs on my plate as I sit down to eat, and start with the lower carb options like roasts and veg to give time for my insulin to kick in.

I know I won’t always get it right, and there will undoubtedly be some blood sugars outside of my target range over the next few days. But I feel this strategy does mitigate most of the damage, making it far easier to correct a high with ease.

Last but not least, food and blood sugar levels are definitely not things that I’m prepared to judge myself for over the next couple of days.

For all those annoying diabetes comments coming my way this week, my shirt says it all.

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).