For the Long Haul.

Hello, November. We meet again.

That one month of the year where my social media feeds turn blue and light up with diabetes awareness.

Much like Halloween, Diabetes Awareness Month isn’t really a thing here in Australia. Aside from marking World Diabetes Day on the 14th of November, our National Diabetes Week takes place in July. Even though I’m just about ready to hang up the Christmas lights and put my feet up for the Summer, it will undoubtedly be hard not to feel obligated to join in and reconnect with the DOC.

One of the first things I was told when I was diagnosed was that I’d have diabetes for the rest of my life. And that it would be a pretty normal life, because it was manageable.

But the one thing that nobody ever told me, and the one thing that nobody ever readied me for, was the fact that diabetes is for the long haul.

Nobody ever stressed to me the monotony of doing those same tasks day in and day out, forever. Whoops, I mean until the cure arrives in five years time. Those annoying little tasks that I know I should do, but really don’t want to. Just like the thought of brushing my teeth at night when all I really want to do is turn the lights off and go to bed. Sure, there are shiny new toys that occasionally pep things up, but the gloss eventually fades.

Nobody ever told me how much mental energy I’d have to devote to this thing. How every single thing I want to do today revolves around numbers and insulin and goodness knows what else. Sometimes, when the going gets tough, it might distract away from the energy I have to put towards the other aspects of my life.

Nobody ever told me that I’d still be explaining diabetes all these years later, to those same people who asked me those same questions eleven years ago. Being your own advocate is exhausting.

Nobody ever prepared me for the fact that there’s never really a finish line. I mean, sure, there are diaversaries. There are decades. There is cake. There are victories. Like a great A1C, or news of an all clear diabetes screening for another year.

But nobody ever prepared me for just how ordinary and unremarkable these things would feel after I’d marked them over and over again. When all I have to look forward to is doing it all over again on the long road ahead.

Happy diabetes awareness month.

Loosening the Reins.

As I opened up my Dexcom Clarity app last night, I wasn’t all too surprised at what I saw.

My time in range wasn’t too shabby, but it was down on prior periods. The variability in my blood glucose readings was considerably larger than what I would usually see. My average blood sugar was sitting at the upper end of my own target range.

Overall, it wasn’t too shabby. But I also knew that it didn’t reflect my best effort.

I know that I haven’t been as diligent as I’d like with pre bolusing insulin before I eat. Case in point yesterday, when I had a muffin and an iced latte on top of a blood sugar level of 12. (It’s been a loooong week). I’ve tolerated longer blocks of time where my blood glucose levels have been flatlining outside of my target range, and I’m not too bothered by it. And I’ve found myself suspending my pump increasingly, because I just can’t bring myself to treat a low (especially after I’ve brushed my teeth).

I’ve made some very lazy changes – like increasing my basal rate to combat the insulin resistance that has crept up in recent weeks. But I’m reluctant to put any effort into making more permanent changes – like revising basal rates of ratios – because I know there are reasons behind what’s happening. Diabetes, or my diabetes at least, is definitely cyclical. I know at some point things will probably go back to where they were.

I’ve definitely loosened the reins, within reason, when it comes to my diabetes over the last several weeks. Quite honestly, it’s freed up mental energy and it’s definitely helped me to realise increased focus in other aspects of my life. Namely, my studies and my mental wellbeing. I also know that this wouldn’t be possible without my own tools of the trade, namely my t:slim pump and Dexcom CGM, which just seamlessly integrate into my own life without being a burden.

I don’t particularly feel like I see enough stories of imperfection when I look online. Sometimes, and in some corners of the internet, it definitely feels like everyone is just perfect and healthy and doesn’t have a crease in their shirt.

So, I’m just going to continue with this somewhat ‘lazy’ but acceptable approach to my diabetes for the time being, because sometimes there’s more to my own self worth than numbers alone.

Within My Control

Dear blog,

I miss you.

To be completely honest, when I sit down to write, I just haven’t felt overly compelled to do so. I also feel like nothing I write here could even remotely compare to what some of you are going through interstate, and in other parts of the world.

I’ve been watching those all important numbers every day, particularly those affecting my friends in Victoria and NSW. Watching the health response to outbreaks on the East Coast gives me hope that there is a way forward and that we can live safely with this virus. I do feel like more of a health advocate than a diabetes one these days, calling out sick people who aren’t staying at home and judging gatherings where social distancing is not being upheld.

I’m extremely grateful for the freedoms we have here in Western Australia, where we have now surpassed six months since our last locally acquired case. Over these past couple of months, I’ve really thrown myself into looking after myself and maintaining somewhat of a healthy work/study/life balance.

I’ve approached uni in a completely different way this semester. I made the difficult decision to cut my winter break short and start a week early, and have been running a week ahead of schedule. It’s been a massive boost to my mindset, and at the end of each week I’ve been mentally praising my efforts. With an extra week up my sleeve should I need it, I have felt far less pressured.

I’ve been running every 2-3 days since July. It’s nothing particularly impressive. I run the same course, and so far I don’t feel as though I’ve built up any distance, but it still feels good nonetheless. Besides, slow and steady wins the race.

I’m also slowly making my way through TV shows that I’ve fallen behind on in recent years, and that’s been quite fun. I’ve also made my way to the beach more times in the last few months than I have in any other year.

I also hurt my wrist a few weeks ago, and quite honestly I think it was a blessing in disguise. It was a reminder that I come first, and that work and uni will still be there on the other side. Quite honestly, the time I was off resting it was the most relaxing week and a half I’d had in a while. Even if the steroids injected into my wrist wreaked havoc on my blood sugars.

Speaking of, my diabetes has been in what I’d best describe as a semi-autopilot mode. My time in range is decent, but it certainly does not reflect my best effort. There’s probably more variability in my numbers than I’d like. My insulin sensitivity has been all over the place in recent weeks, too. I find myself suspending my pump far too often because I can’t bring myself to eat glucose tabs.

I’m okay with all of that. I’ve adapted as needed. I’ll survive. I know those numbers don’t reflect my worth as a person.

I know that while I can’t control the numbers, or what fates our leaders decide for us, I can control what I do to take care of myself.

‘I Don’t Have Time For That.’

I don’t have time for that!’

This was the answer I received from the doctor I was seeing yesterday, who was seemingly unable to complete my request. After being made to feel rushed and a complete inconvenience during our entire two minutes together, I was abruptly ushered out of the room to finish with the clinic nurse.

I’m having a week. Let me backtrack.

Some soreness crept up on my wrist over the course of last week, and by the end of the week I decided I had to get it checked out. It was the weekend, I couldn’t get in with my own GP, so I made an appointment at a relatively new practice that’s close to home. Plus, I’ve been on the hunt for a good doctor around the place.

The clinic itself was pretty modern. I was easily able to book an appointment online and there were a range of services, delivery options and timeslots available. The premises were relatively new, the decor was fresh and there was even a check in counter that I didn’t register until watching others use it. Oh, and I made a bit of a fool of myself trying to open the automatic door with a wave of my hand over the sensor.

After waiting close to an hour for my appointment, I explained my conundrum to the doctor. After telling me that we need to get on top of this, I was given a referral for an x-ray, the possibility of a needle was mentioned and I was abruptly sent on my way.

I didn’t think much of this place, but then again perhaps there was nothing to discuss until we had a x-ray and ultrasound results to look at. I only really went back to discuss those radiology results yesterday. In hindsight, it would have been better to copy them into my GP instead.

I was really looking for some advice on a course of action, and whether I’d be able to safely go back to work. Radiology had encouraged me to book in for a cortisone shot to ease the inflammation in my wrist, which must have been the needle my doctor had abruptly mentioned. But it felt a bit premature. Especially given that I was sore, but not in pain. I didn’t know a lot about it, either, as well as it’s impact on my diabetes.

But my whole follow up appointment yesterday felt rushed. We discussed another option to the shot, which I learned would ultimately take longer to recover. When I began to discuss a plan for returning to work, I got the message loud and clear that I was wasting this doctor’s time.

To be honest, I wasn’t expecting a lot from a bulk billing clinic. I get that they’re busy, and I get that they’re operating on a quick turnaround.

But I only wanted my ten minutes I had booked to discuss my one issue. I don’t think I was even in there for five. I don’t think it’s a big ask for a healthcare professional to listen to and answer my questions and concerns. I certainly don’t think it’s a big ask to be treated with the same respect that I treated this doctor with, and not like I was wasting someone else’s time.

Language matters. Language bloody matters.

I was left with two courses of action, but unfortunately not a lot of information about them. Thankfully, I went home and talked with my own tribe.

With a bit of consultation with Dr Google, I made a decision.

This doctor definitely won’t be a part of the follow up.

More than a Dexcom Line Could Ever Explain

I spent an intense two weeks buckling down to get two uni assignments done. While they were both due at the same time, it was also a good opportunity to knock them off early in the semester. Once I start something, I get pretty determined to finish. Suffice to say they were finished two weeks ahead of the due date.

I watched my diabetes respond to more evening hours in front of the computer, as well as general feelings of grumpiness as uni ate into my free time. The one symptom that tells me I’m not getting enough rest is a surge in blood glucose the moment my head hits the pillow at night. As well as general feelings of a heavier, groggier kind of sleep.

Before I used an insulin pump, one of the things I often used to complain about was that my basal dose was never consistent. There were times where I felt I needed more, and times where it was too much.

While insulin pumping undoubtedly gives me far superior coverage, my basal requirements are still far from static. Stress is definitely one of those things that affects blood sugar. There are times, just like in the past month, where levels have felt a lot more stubborn to manage. One of my tactics is to simply add a blanket 10% increase to my basal rates until it subsides.

I spent the better part of a week post-assignments looking after myself, binging through the final season of 13 Reasons Why (which was like a really bad movie that I had to see the end of). I wiped my desk clean, vacuumed the floor and got outside again. Sure enough, it didn’t take too long for me to start going low and I wound those basals back again.

All too often when I’m explaining diabetes, it’s easy to oversimplify it. Diabetes is a simple case of taking a shot of insulin to manage blood sugar levels, and hey presto it’s all under control. Basal rates and carb ratios and sensitivity factors just work all the time, and there’s nothing more to think about.

As I sat down at diabetes clinic a few days ago, pouring over my Clarity reports, I said all of the above as I explained what had been happening. Much less cohesively, of course.

I’m not too sure whether a healthcare professional will ever be able to truly ‘get’ all of these little intricacies that only someone living with diabetes day in and day out would get.

However, the one thing I know for sure is that there’s always an explanation that a Dexcom line alone will never be able to explain.