4.4

There was a time where the low alert on my CGM, or the mental indicator in brain, was set at 3.9. That was when I’d reach for some glucose tabs and do something to fix my low.

When my blood sugar was sitting in the low 4s, I’d be tempted to ride it out more often than not to see if I could avoid glucose tabs. Because honestly, does anyone really like eating glucose tabs? That strategy almost never worked, often leading to my hypo brain emptying the kitchen cupboards.

Let me say this. Lows are fatiguing. The longer I’m low, and the lower my low is, the more depleted I feel. It’s a link I’ve drawn this year, as I’ve been continuing to focus on sleeping well and feeling energised enough to get through my day. My lows definitely needed more attention than I was giving them. The attention that I can best describe with one number and one number alone.

4.4.

That’s the low threshold which I have set for my CGM to alert me that my blood sugar is trending low. I’m ultimately setting myself up for more annoying alerts than what I’d like. But I can live with those extra alerts, because it’s a tactic that’s helped me massively in more promptly addressing my lows and reducing my time below target.

4.4 is like a cushion. A buffer. It buys me time to treat that low while I’m still feeling good, and technically not yet ‘below target.’

For reporting purposes, my low threshold is different to that on my CGM. In Dexcom Clarity, I’ve defined my low threshold as 3.9. That’s what I was educated with, and that’s also the consensus I’ve heard from CDE Jenny Smith on the Juicebox Podcast (which is well worth a listen).

At the end of last year, I’d typically be looking at least 4-5% below target. During rougher diabetes periods, that could even be as high as 8%. It was never something easy for me to bring down. But today, my most recent 30 days look like this.

I’ve rolled my eyes in the past at healthcare professionals and their ‘edginess’ around lows. I’ve had a plastic cup of hypo fluid thrust in front of me as soon I produce a 4.0 on the clinic meter. I still think that lows are not as scary when you actually have to live with them. But I’ve come to agree with my clinic nurses on treating them with urgency.

While I don’t treat my lows with a fear of collapsing at the forefront of my mind, I treat them for me.

Less time below target = greater energy and greater happiness.

Slowing Down

The moment that I had been longing for, for so many weeks, finally rolled around on Friday afternoon. After I hit the ‘submit’ button on my final exam for the semester, I could finally log out of Blackboard and turn off my laptop with a sunny weekend and six weeks of freedom to look forward to.

On around Tuesday or Wednesday last week, as I was completely zoned out of the conversations that were happening around me, I knew I had well and truly depleted myself.

In some ways, I haven’t really had much of a chance to slow down since this whole pandemic began. I acknowledge just how lucky I am to have a job, and to continue receiving an education. I’m also extremely lucky to be in Western Australia, where our relative isolation and hard border closures against interstate travellers have left us with next to no locally acquired cases in the community.

But this whole situation distracted me big time, nonetheless. Namely reading the news and keeping tabs on what’s happening here, the rest of Australia, and the world. There have been days where I haven’t had it in me to spend time studying in the evenings like I should.

This has ultimately led to me feeling as though I’ve been cooped up inside more than ever during these final weeks of semester, playing catch up and furiously revising for exams. I work indoors for eight hours a day, and then I’ve had to come home and confine myself to my desk for a few more hours revising for my exams. During the shortest days of the year, that feeling of being cooped up is definitely amplified.

During Ascensia’s Social Media Summit I participated in last week, it was suggested that self care and wellness are often promoted as something we should aspire to throughout those picture perfect Instagram feeds. However, the reality is that people with diabetes are often made to feel lesser for looking after themselves – namely during a pandemic.

American advocates shared stories of being ridiculed for choosing to wear masks outside of the house, while in Australia some of us are not feeling ready to venture out as Coronavirus restrictions are being eased.

Life is slowly getting back to normal here in Western Australia, albeit with continued hygiene, social distancing measures and (hopefully) a continued hard border restriction against travel. One way that I’m taking care of myself is reminding myself to slow down.

I’ve got to admit since this whole pandemic began, I’ve envied all of the free time that people around me have seemingly found. I’ve also wanted nothing more than to sleep in, go outside in the middle of the day and watch the midday movie. Well, not the midday movie specifically, but you get my gist.

So, that’s exactly what I plan on making time for in the weeks ahead.

Falling Onto My Backup Plan

On a rather gloomy Saturday afternoon, I was sitting at the dining table at home and making good progress in revising for my Financial Reporting exam this week. My pump began to vibrate and I pulled it out, thinking it might be a high alarm.

After 18 months of using a t:slim (and another two and a half years using a reliable Animas Vibe before that), a pump malfunction was the very last thing that I was expecting.

Admittedly, the first thing I did was type bits of my error message into the Tandem Australia Facebook group to see if anyone else had the same problem – and it seemed there had been a few.

After a chat and a bit of troubleshooting with AMSL Diabetes over the phone, we eventually concluded that the Bluetooth on my pump had carked it and a replacement would be sent my way this week.

So, no big deal. The pump was still useable for insulin delivery, it just wouldn’t be able to connect to my Dexcom. All good.

Before bed, I noticed that my pump battery was hovering around the 50% mark. Thinking nothing of it after the earlier troubleshooting, I played it safe and charged it back up before going to bed.

Then at around 4am the next morning, I was woken by my pump, alarming me that my battery was down to 20%. It soon became clear that this malfunction was now causing my battery to drain quite rapidly and the pump was no longer usable.

Which brings me to the backup plan I’ve unexpectedly had to fall back onto.

One of the reasons I wanted to upgrade my pump last month was for the sake of having a spare. After four years of insulin pumping, I’ve reached a point where I have very little desire to manage my diabetes in any other way. For now, at least. With my old t:slim now sitting in my wardrobe, I was able to simply pull it out and seamlessly continue using the pump I know and love.

Obviously, the other part of the backup plan is having an in-warranty pump. One of the best things about distributor AMSL Diabetes is that I can call them any time of the day or night and speak to someone local – and within the space of a few days I’ve already got a replacement pump in my hands.

Of course, if that failed, I did have some long acting insulin in the fridge, as well as friends who I know would be able to help me out with a spare pump if I needed it.

I often find myself thinking about how I would manage my diabetes should the unexpected happen, but I never really think that I’ll need to.

I guess that’s what’s backup plans are for.

A Rational Decision.

During my pump upgrade a few weeks ago, I casually made the comment that I wasn’t changing my insulin cartridge every three days as recommended.

Following the less-than-ideal reception I was met with, I made sure to highlight that this was an entirely rational decision. One where I was clearly knew that I was going against the advice given to me, but one that makes complete sense for myself and myself alone.

Using an insulin cartridge beyond three days is not recommended by the manufacturer of my insulin pump. The plastic bag inside a t:slim cartridge is not guaranteed to safely maintain my insulin beyond the three day mark. My healthcare team have rightfully provided me with this instruction.

After carefully considering this information, I’ve arrived at a decision that is entirely rational to me. I have been sporting cartridges that are up to 7 days old for much of the past 18 months. I notice no difference to the quality of my insulin, nor have I noticed any related issues with blood sugar levels.

For me, that risk is worth the time I save in changing my cartridge once per week rather than two. That risk is worth the convenience of having one set, easy-to-remember time each week when I change my cartridge. In my case, Saturday mornings. That risk is totally worth the money I save on insulin cartridges. I know they’re not awfully expensive, but in the grand scheme of living with diabetes, every little bit helps.

I’ve been doing this for much of the past 18 months, so it’s second nature to me. But if I had my time back, I might have thought more carefully before speaking.

My team began asking my if I had noticed any issues with my levels in doing so. I hadn’t. This also seemed to be misconstrued as me only changing my infusion set every 7 days – which was not the case. Although, I do change every three and a half days, which enables me the convenience to change at the same time each week.

I’m almost certain that my ‘non-compliance’ went onto my chart. During a phone call this week, I was asked if I had been remembering to change my infusion set. I kind of have the feeling that’s not the last I’ll be hearing of it.

I have the utmost respect for my healthcare professionals and diabetes device reps.

But there’s undoubtedly a huge gap that exists between the guidelines and real world experiences. People with diabetes are making decisions that are rational to them, based on countless hours of real world lived experience. Eating choices and Do It Yourself technology are two such examples that come to mind. I’m certainly not asking healthcare professionals to break their guidelines or to stop following the rules.

But I want to be honest. I don’t want to have to hold back information, in anticipation of a less than favourable reaction. It would be nice to simply receive a little more understanding of those rational decisions that make sense to us.