Diabetes Musings

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.

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.

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.

I was sitting on the couch last night after dinner, watching an old episode of Seinfeld that was on TV (it was the one where Kramer apologises to a monkey, in case you were wondering…).

I could feel a low coming on, but I wasn’t 100% sure. I got up, washed my hands and made my way into my room. I closed the door shut, which felt somewhat like a huge effort.

I sank into the office chair behind my desk. I reached out, trapping my meter, strips and lancing device in my outstretched hand and dragged them towards me.

My blood sugar was 2.4.

Reaching for a juicebox inside my desk drawer, I jabbed a straw in and guzzled out the contents of it within seconds.

I sat there, paralysed, in my desk chair, wanting to do more to address just how awful I felt. I felt hot and stuffy, largely thanks to the layers I was wearing. But I’d never been more grateful to feel hot and stuffy, rather than feeling shivery-scary.

I buried my face in my hands, as time stood still. I exerted somewhat of a moan into my sleeves, which very helpfully muffled the noise I was making.

I checked the time on my phone, wishing I’d taken note of when I sucked the life out of that juice box. I tried to rack my brain for the answer, but it’s concept of time was all jumbled.

The next check in I-can’t-remember-how-many-minutes’ time registered at 3.4. Not too long after that, I could feel my brain function returning. I very relievedly sank onto the couch in front of Superstore, which was all I could really muster for the remainder of the evening.

From one sudden hypo, I felt absolutely wrecked.

As I was sitting there, I couldn’t help but draw the irony in a conversation I’d had earlier that day – a follow up call from my pump start a few weeks ago.

‘And your levels are going okay?’

I think I was more distressed at the beginning of all of this. In February and March, people around me were still travelling when the government was urging us to reconsider. People were returning home from overseas and not undertaking the 14 day self isolation that our government was requesting of us. As a retail worker, I was so angry at the number of parents and children and elderly people I witnessed in shopping centres for what definitely was not essential shopping.

The restrictions imposed by our governments definitely brought with it a massive sense of relief in getting people to take this situation more seriously. Closing our borders was absolutely the best thing our leaders could have done. Mark McGowan has done a brilliant job with state and intrastate border closures here in WA, and I think it’s absolutely laughable to suggest that it is safe to reopen state borders.

Being an essential worker, I’ve still been going into work throughout all of this. My employer did provide us with the option of taking leave if we didn’t want to be at work, although I never really felt that I couldn’t go to work. By far, the best thing about this has been seeing and talking to my friends at work each day – from a healthy 1.5 metre distance.

My day to day hasn’t changed all that much. Having that workday routine has meant that my diabetes management and blood sugars haven’t been significantly impacted by the situation at hand. I’ve only had to deal with issues related to cooler weather in recent weeks. Although, I would love to be able to find some of this free time that everyone seems to be realising!

Staying at home hasn’t been all that hard for me. I’m far from being someone who doesn’t know how to keep myself occupied at home. Evenings and weekends are often filled with uni work, anyhow. Although I must admit that I am feeling a bit of cabin fever, especially with my sister working from home in the room behind mine and my brother often walking in and booming in his loud voice. There have been times where I have desperately wanted to escape to the uni library or a cafe to get some work done. There have been people I’ve been wanting to catch up with, but haven’t been able to.

The biggest challenge that I’m still dealing with is a loss of routine. I’ve lost the structure and organisation that I like to have in my life. I’m distracted. But I’m happy to allow that distraction, to a degree, for the sake of looking after my mindset. That means being easier on myself if I don’t feel like studying, or being as productive as I usually would.

Getting outside has always been a way that I look after my mindset, but I’ve definitely been making more of a conscious effort to do so. I live in a suburb that actually has character, and one of my great pleasures is just taking in people’s houses and front yards. I live relatively close to the coast, and I’ve been making more of an effort to get down to Trigg Beach at least once a week. As well as mixing up my trails in general.

In terms of diabetes, peer support is always relatively easy to find. YADC meetings and conversations are continuing through Zoom and our Facebook group chat. The DOC can always be found on social media. I withdrew earlier on, for the sake of avoiding the editorial and looking after my mindset. But lately, I’m definitely feeling the desire to jump in more often than I have been.

It’s hard to feel uncomfortable here in WA, where I daresay that we’ve demonstrated the greatest success of containing the virus.

In terms of restrictions being eased, I think that people generally are taking this a lot more seriously than they were in March.

State border closures will keep me in my comfort zone for the time being, and thankfully it doesn’t look like they’ll be lifted for quite some time.