Diabetes Musings

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.

Over the past couple of months, the expiration on my pump’s warranty has been weighing heavily on my mind. As much as I loved my t:slim, was I ready to commit to it for another four years?

I think what made this decision so difficult was that I don’t intend on updating my pump to Dexcom G6 and Basal IQ in the foreseeable future. I use a rebatteried Dexcom G5 transmitter, and that won’t be an option with G6. It really frustrates me that despite a clear message from the 3,000 strong Diabatteries Down Under community, this technology is still going to be out of reach for many. I digress…

I weighed up all of my options. I read blogs. I searched through Facebook groups. I scoured the internet. I think it’s fantastic that we have choices in diabetes technology, and I know that each of the different systems out there meet the different needs of different people.

The only other real option that interested me was looping. After trying it out over the Summer, I conceded that it wasn’t for me. Additionally, Dexcom G5 is unlikely to be around forever, which puts a time limit on looping for me. But that’s the subject for another post.

I can’t say that I would have jumped at the opportunity to buy another Animas pump, but choosing a new t:slim was a relatively easy decision. I’ve been really happy with it, and wasn’t particularly inclined to switch to something different. It’s modern, it’s small and it doesn’t fatigue me like my Animas did. It meets my needs perfectly. Dexcom G5 has been a fantastic addition to that system, even if that’s as far as I’ll be able to take it for the time being.

I wanted to upgrade my pump now, for a number of reasons. For starters, at the moment my health insurance covers me for a pump on an affordable bronze policy. I didn’t particularly want to be on an out of warranty pump right now if I could avoid it. Finally, I really wanted to get a new t:slim now, while they are still shipping with G5 integration.

In terms of the future, I believe that the Tandem/Dexcom pairing definitely looks to be the most user friendly. Of all the systems on the market and their promised updates, I believe that this is the one that we will see here in Australia the soonest. That will always be an option down the road, should my circumstances change.

To give distributor AMSL Diabetes some credit, their customer support has been fantastic and they’ve helped me out on more than one occasion over the last four years. They definitely have that ‘family’ feel to them, and I always look forward to catching up with the reps (even if I do occasionally like to push their buttons). I’m sure I must be their favourite customer by now.

So, while sticking with the same pump might not feel like the biggest decision, it was definitely was.

#TslimForFrank!

I’m not too sure what the right word is, but I’m feeling somewhat out of sync right now.

This has felt like the longest semester of uni ever. Which isn’t logical, given that not a great deal has changed for me as a fully online student (except for being ignored even more than we were prior to campus shutdowns…).

Perhaps it’s because I’ve spent the better part of April powering through assignments, because I’m not the kind of person who does well at doing a little bit at a time. More logically, it’s probably due to how much has changed in the world around me over such a short space of time.

I used to religiously do set changes twice a week – at 9am on Sunday mornings and at 4pm on Wednesday afternoons. Nowadays, I find myself consciously putting them off until I remember right before bed. Or, the next morning.

My blood sugars feel like a bit of disorganised chaos. Overall, they’re just doing lots of unexpected things that are requiring a lot more input from me than normal. Prime example being a typical rise at around bedtime, a correction and then a high alert at around 3am when it’s risen beyond my high threshold again. I can’t be bothered basal testing and ‘resetting’ right now. Even though I really want to.

My Dexcom sensor is fraying at the edges. I know I need to tape it down, but I don’t want to spare a moment to cut a patch from my Opsite Flexfix roll. Instead, I’m resorting to keeping my left arm away from the shower hose so that my sensor stays dry until I finally decide to tape it down.

I can’t say that I miss Summer. But I do miss the early mornings and light streaming in from behind the blinds at 6am. It’s incredibly hard to wake up in the dark. I do miss being able to sit outside in front of my laptop working through assignments in the evenings. Last night, I had to concede that I could no longer see my textbook properly by 5.30. Weekdays feel incredibly short.

I haven’t been great at organising my meals of late, either. It’s been leftovers to the rescue this week, including homemade scrolls for morning tea and pizza from Marco’s for lunch on Tuesday. While I’d happily eat scrolls and pizza for the rest of my life, I am feeling a bit of guilt for not having anything more nutritious during the day.

I also don’t think I can take one more patronising ad from privileged people who have no idea what we are going through, telling me that we’ll get through this.

The brighter news is that my assignments have been submitted for the semester, my weekends are much free-er and upping my basal rates by 20% have largely kept the blood sugars at bay. Superstore is keeping me pretty entertained right now (after years of working in retail, where has this show been all of my life?) The weather forecast for the weekend is looking pretty good, too.

While my day to day hasn’t been greatly impacted by Coronavirus, I think the rapid changes over the past weeks while continuing to push through with life, are definitely catching up with me in other ways.

So I guess, in a nutshell, this best describes how I’m coping right now.