Diagnosis in the Wild

Not too long ago, a friend of mine was telling me about a member of her family. The family member in question was going to the doctor to get some blood tests done, because all he seemed to do was sleep. She went on to tell me that she thought that he might be diabetic, thanks to a friend of the family who had gone through the same thing.

I began to ask my friend if the person in question was thirsty. He was indeed. He was going to the toilet quite often, as well. She went on to tell me that his eating habits weren’t great either, particularly as he had a tendency to snack late at night.

A few days later, the person in question was told he had type 2 diabetes by his GP. I believe he was prescribed some oral medication to take daily. When I politely asked what the GP had said to him, it was exactly what I expected to hear.

“Lose weight, exercise, and cut back on your portions.”

It’s not the first time I’ve heard a recount like this one. GP’s don’t know enough about diabetes. To be completely honest, I don’t expect them to. But there are allied healthcare professionals who do specialise in diabetes. Their services are free in public hospitals to people with a Medicare card, and accessible through something as simple as a GP’s referral. Yet the vague, unhelpful and judgemental guidance being given is setting people up to fail.

I tried to explain to my friend the body was producing insulin, the hormone that regulates blood sugar levels, but was having a little trouble using it properly. I tried to explain that blood glucose levels typically rise after eating, and that they need time to fall back into range again after eating before starting again.

I politely asked if they’d been referred to a diabetes hospital clinic, and went on to explain that there was more customised diabetes support available for free if they needed it. I also asked if they would like one of the spare blood glucose meters I had sitting in my wardrobe at home.

Earlier this week I showed my friend how to use the meter, and laughed as she shuddered at the sight of me applying my own blood to the test strip (with my own lancing device, of course). I explained that a target of between 4 and 8 was ideal, and that mornings were a good indicator of progress as our bodies have typically been fasting overnight. I told her that if they wanted more strips in future, they could see their GP about registering with the National Diabetes Services Scheme. And I told her that I was happy to answer any questions they had.

For someone new to diabetes, I’m sure that this was a lot of information. I have no idea how much of it will stick. Or whether they will use that meter. Or how they will deal with this new diagnosis. But I don’t think that I will ask again.

The way we each deal with our diagnosis is extremely unique. We go through a range of emotions. Sadness, frustration, isolation, shame and even denial. We need time and space. Some of us might not want to know anything about diabetes, while others may feel ready to jump in and immerse themselves into this strange new world. As much as I would like to see people err toward the latter, it has to be on their own terms. Not mine.

Micro-managing Diabetes

When it comes to living with diabetes, I have all of the worries in the world. Like, whether I am doing enough to look after myself. How secure a position I am in to be able to continue to manage my diabetes well going forward. Whether I could be doing better. Whether there is a link between what I am going through right now and my diabetes.

I was sitting in the hallway of diabetes clinic yesterday afternoon, waiting to see my endo. I overhead conversations from behind closed doors, I watched two doctors consult on a course of treatment, and I saw a few people come in and out of appointment rooms. What I heard and saw isn’t really pertinent to this story, except to say that my mind wandered in about ten different directions over the half hour I was sitting there.

Right now, I’m feeling a little run down. It’s totally understandable, given uni and full time work that I’ve been juggling over the past few months. I’m pretty sure it’s nothing I can’t fix myself with a bit of TLC. But I brought it up with my endo, wanting to make sure that there wasn’t a link to diabetes.

She had a look through my notes, and asked me if I’d had bloodwork done recently (which I had). Then she made a timid suggestion.

“Is there any possibility that you might be able to relax your control a little bit?”

We had a nice laugh at the prospect of me only checking my blood sugar four times per day, but I think ultimately she was right. Although I haven’t really been ‘trying’ for any specific target, my micromanaging habits have definitely become worse the more I expect of myself.

There are times where I could definitely go without glancing at my pump screen. Or not prick my finger to detect a very insignificant movement in my blood sugar. Or counting the number of infusion sets and pump cartridges in my wardrobe and calculating a set-to-cartridge ratio.

The voice of my subconscious could definitely give me some acknowledgement for my efforts more often, which ironically is something I always value highly in my day job. I could definitely be kinder to my meter when I see a high or low blood sugar, because it really is just a number.

My endo also likened my blues to the miserable weather outside of late, and then joked that being a doctor doesn’t exempt her from being tired, either. “Everyone gets tired!”

That tiny little piece of empathy, whether it was true or not, really made all of the difference in the world.

A1C Day

“What do you think your hba1c is?”

“Low 6s?” I mused, thinking about the average blood glucose levels I have been running of late.

It was better than my best guess. While it definitely ‘wowed’ me, it wasn’t inconceivable. I hadn’t even really been aiming for that particular number, and yet I had set myself a new personal best without even really trying.

When I think about all of the hba1c results I’ve received over the years, I’ve either been dying to know the result or completely dreading it. I’ve either walked out of clinic literally jumping for joy or feeling bitter disappointment. Every healthcare professional asks me what my last hba1c was the minute I mention that I have type 1 diabetes, and I’ve definitely let myself feel ‘judged’ by that number at some point or another.

But this one was different. I wanted to get my a1c done because it had been over six months since my last one, rather than because I actually wanted to know the number. I’d actually given far more thought to the context leading up to that number as I’d been mentally preparing for this appointment, rather than the number itself.

Things like my average blood glucose levels. Or the standard deviation of my numbers. My time in range, when I’m wearing a Libre. Or the Winter insulin resistance of late. How much I’ve been eating. How well I’ve been sleeping. Just how I’ve been feeling about diabetes in general.

I think my diabetes educator was more pleased for me than I was. We went through my numbers, and she was satisfied that there weren’t a lot of highs and lows. She pulled out my file that impressively documented my history from my diagnosis nine years ago, possibly trying to convince me how well I was doing, and we laughed over a note of me being ‘a lovely 17 year old uni student living with his parents and three siblings.’

“This has been three years of constantly learning about my blood sugars, and learning from experience.” I told her. “I really think that I only get out of these appointments what I’m willing to share with you. If you looked back at some of these appointment notes, you’d probably find that most of them would say that I was doing well. But I know that I wasn’t. I was just too scared to be honest.”

When it comes to living with diabetes, I only spend a fraction of my time in the company of a healthcare professional. For the other chunk of that time, I’m left to make hundreds and hundreds and hundreds of decisions on my own. The only person who I really hear talking back to me is my own subconscious. I’m always thinking about what I haven’t done well. Or what I could be doing better. I’m my own worst critic.

What my subconscious is not good at is giving myself credit for my efforts. I think that’s what my diabetes educator was picking up from me. So it was nice to hear someone else’s voice, rather than my own, telling me that I was doing pretty well.

If that didn’t convince me, white hot chocolate would have to.

Accountability

After two weeks of FreeStyle Libre bliss, finger pricks feel somewhat like disorganised chaos.

Test strips can often be found scattered across my desk, because I’m too lazy to aim for my pencil cup when ejecting test strips from my AccuChek Guide. Blood stains can be found smattered on my desk, because I can never quite find a happy medium between strip fill errors and a bloodbath on my fingers. And then those bloodstains end up on my insulin pump. And my iPhone.

I don’t have the convenience of leaving the house with nothing but my iPhone and a tube of glucose tabs in my pockets. Reaching for my meter, lancet and test strips at 3am feels like hard labour compared to the relative ease of swiping my reader against my arm in the dark.

More than anything, I just don’t feel that same accountability that I do when I’m looking at my Libre reader and seeing that continuous flow of extremely photogenic data. I don’t feel as motivated to keep my blood sugars between the lines when I can’t see them.

I must admit that its been a while since I last properly utilised the Bluetooth capabilities on my blood glucose meters. I did have a valid excuse when I was the owner of a very poorly performing iPhone 6. But that’s no longer an issue since I upgraded to a (refurbished) 7 Plus a few months ago.

At the Diabetes Congress last year, I learned that the mySugr diabetes logbook app could now receive readings from AccuChek blood glucose meters. So, keen to try something new, I downloaded mySugr and connected both of my AccuChek meters.

I have to say, its helped me to rediscover the accountability that I’ve missed when I’m not using the Libre. It’s nice to open up the app and look through my numbers and averages. Those 15 or so finger pricks throughout the day get packaged up into a half decent graph. It gives me a good picture of how I’m tracking along through the day.

One thing that would make a great addition to the app would be the ability to receive data from my insulin pump, and other diabetes devices. Alas, we don’t seem to do interoperability all that well in the diabetes community. I’m also still waiting on a bolus calculator, which would be extremely helpful to MDI-ers.

Yes, mySugr can do a lot of other wonderful things, but for me it’s proven it’s worth in accountability alone. I would like to put more effort into ‘marking’ my readings, which would allow me more ‘filters’ when reviewing my data. But logging data isn’t really my thing.

Quite honestly, I don’t see myself moving beyond my current regime of intermittent FreeStyle Libre and finger pricking in the near future. So, it’s really fantastic to see more options that bring some of those tech benefits to people doing it old-school.