Insulin

“Can You Have Any of That Stuff?”

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“What would you like to drink, Frank? Zero?”

“Yeah, zero. Thank you.”

“You’re diabetic, aren’t you? You can’t really have that, can you?” My friend’s daughter asked me as I pulled the tab on the can and took my first sip, referring of course to the full sugar coke.

“I could have it if I wanted to. But this makes it easier, I replied while wildly gesturing to the can in my hand.”

“That spikes you really quickly, yeah?”

“Yeah.”

“So can you have any of that stuff at all?”

“My body doesn’t produce any insulin. So if I drank that, I would have to give insulin to cover it. But I’d prefer not to. I’d rather have my sugar in solid foods anyway,” I added, weirdly gesturing at the plate of mandarines on the coffee table but really thinking about chocolate or biscotti or a good milky coffee. Or cannoli.

I feel like I’m walking a very thin tightrope whenever I’m trying to explain diabetes to, well, people who don’t clearly don’t have diabetes. I get this burning desire to dispel the myth that I’m sentenced to a miserable life without any sugar just because I have diabetes. Then I always feel this great sense of responsibility not to stigmatise my fellow PWD by linking other types of diabetes to a poor diet or lack of physical activity.

I feel like I’ve done this far too many times already. I’m sure it won’t be long before I’m explaining diabetes to someone else, once again. I only wish that conversations like these would ‘stick’ more easily, and translate into a better understanding of diabetes.

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.

Do Your Insulin Needs Increase During Winter?

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I could feel my blood boiling.

With every single swipe of my FreeStyle Libre reader against the sensor on my arm, I felt increasingly frustrated.

Despite being pretty confident in what I’d eaten and covered with insulin for dinner, my levels dipped slightly before slowly but steadily ascending once again. A pattern that had become somewhat typical over the past couple of weeks following meals.

Despite correction after correction, my blood sugar levels were yet to budge.

My mind wandered back to the pump break I had taken in late April and May. I thought about how easy blood sugar levels had been to manage with pens and needles. How free my mind had been from frustration.

That pump complacency I felt on the night I disconnected my pump in late April had returned. I didn’t want to be feeling it, but it was there, plaguing my thoughts against my own will.

Then, I just had this sort of ‘epiphany.’

I set a temporary basal rate increase of 10% on my insulin pump, hoping that it would help my correction doses to start working better.

When my insulin still seemed ‘sluggish’ a few hours before bed, I increased it to 20%. After a few more days had passed, I went into my pump settings and permanently adjusted the basal rates upwards by 20%.

I’ve heard it discussed before in the diabetes community. I’ll be the first to admit that I never brought into the whole concept of insulin needs increasing during the Winter. And decreasing during the Summer, for that matter.

I don’t know what causes it. There’s been no significant change in my activity levels. I’m very active during my work day as usual, and don’t go anywhere near the gym or a pair of running shoes when I’m at home. My routine is the same. Admittedly, I probably spend less time outdoors or in the sunlight at the moment. Maybe there’s an increased inclination to drink coffee, eat cannoli and watch Australian Survivor.

More than anything, I think it may be an environmental or physiological factor.

I’m just grateful that my insulin is working again and that I can spend more of my day in range, fighting less of an uphill battle in doing so.

After eight years, I’m still learning new things about my diabetes. I truly believe that the more time and experience I have under my belt, the better equipped I am to live with it.

Replicating the Good Days

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At the moment, I’m trying to replicate days like these.

Rather than these.

I have whole weeks where my carb counting is spot on, insulin just ‘works’ and blood sugars are simply effortless to manage. There are less highs, and less lows. The stream of good blood sugars seem to have somewhat of a flow on effect, so long as I can keep the train on course.

Then there are the weeks where blood sugars simply do not want to co-operate with the maths. Blood sugars feel like a lot of effort to manage, because naturally the insulin doesn’t work as well when levels are out of range. The urge to rage bolus is real, ultimately leading to more lows, and more rebound highs. It feels much more difficult to get the train back onto the course, rather than simply keeping it on the course.

In the midst of trying to pinpoint things, this was yesterday’s discovery.

11.1 was the greeting that I received from my FreeStyle Libre sensor after breakfast yesterday. It’s not what I was expecting, given that I had woken up to a blood sugar of 6.2 and carb counted my eggs on toast and milky coffee.

I gave an additional unit of insulin, and decided against reducing my basal rate for a day on my feet at work until that stubborn high started to come down.

Normally, a one unit correction while ripping open pallets of bulky furniture would send me plummeting. Yesterday, I was lucky to nudge the top edge of my target range.

As I recalled the day prior, my blood sugar had also remained stubbornly in the 8s despite repeated corrections. After increasing my basal rate in the evening and avoiding every urge in my body to rage bolus, I slowly but surely landed back into range by bedtime. Only to find that the ascent had begun once again when I checked at 1am.

By this point, I knew what had happened. In fact, I was feeling like an idiot that I had not picked up on this sooner.

Perhaps not as terrible as the banana bread highs that spoiled insulin had given me last time, but spoiled enough to make my blood sugars noticeably more stubborn to manage than usual.

Tools and technologies are only as smart as the people using them.

By sharing some more bits of the daily grind here, I’m hoping to make myself a bit more accountable to replicate more of those good days.

One Messy Night.

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I was ready to go to bed.

As I watched my blood sugar slowly climb into the 10s, I gave a unit of insulin to correct. Thinking about the after effects of stacking my dinnertime insulin on top of a late afternoon coffee and one of Nonna’s biscotti, I set a temporary basal rate of 150% for 2 hours to help that insulin better do its job.

I set the alarm on my iPhone for 1am and switched off the lamp on my bedside. With a nagging feeling of doubt as I turned on my side, I fumbled for my pump in the dark and gave another unit.

DURN! DURN! DURN! DURN! 

I hastily fumbled for my phone to silence the shrieking alarm, before switching on my bedside lamp again. As I swiped my Libre reader, I was half expecting see blood sugars heading into low territory.

Instead, I was actually a pleasant 13.8.

I was in disbelief. However, I thought it could be plausible after having pasta for dinner. I reached for my insulin pump, and gave a rage bolus of 3 units.

ZZZZ! ZZZZ! ZZZZ! ZZZZ!

My rage clearly wasn’t enough to fuel the delivery of this bolus, which was stopped in its tracks by a very irritating occlusion alarm that was hissing and vibrating at me for attention.

I ripped the cap off my infusion site, which revealed a perfectly clear looking site. A poke and prod around the area showed no signs of any discomfort. I primed several units of insulin out of my pump line, watching it spill over the cannula and pool around the cap to satisfy my paranoia. I held my pump line up in the air and ran it through my fingers, watching it like a hawk for signs of air bubbles.

With my paranoia satisfied, I reattached the cap to my infusion site and delivered the remainder of the bolus that my pump had cut off. I set another temporary basal rate of 150% for the next two hours, setting my alarm for 3am.

When I stirred at 2.17am, feeling rather uncomfortable, my Libre reader revealed a reading of 17.7 and rising. I hastily grabbed my pump and went to deliver another rage bolus of 5 units.

ZZZZ! ZZZZ! ZZZZ! ZZZZ!

That hissing, vibrating occlusion alarm sounded once again, stopping my rage bolus in it’s tracks.

By this point, I was furious as I flung my bed covers away from me and was forced out of bed.

Finally, I ripped the infusion site away from my stomach. There was no kink in the cannula. There were no signs of blood, bruising or bleeding on my stomach where I’d placed the site. Everything looked fine, and I was convinced I had just wasted a perfectly good site.

After inserting a fresh infusion site, setting a temporary basal rate and delivering my third rage bolus of the night, I was finally able to close my eyes.

I wasn’t surprised to learn that I’d slept over my 6.25am alarm. I gulped down my coffee, showered, and hastily threw two pieces of frozen Pane Di Casa into my bag to toast at work.

I soldiered on, reminded of just how much responsibility rests on my shoulders every day.