Why We Need to Stop Asking People If Their Diabetes Is Controlled

In my latest column for Diabetes Daily, I’m talking about why I think this question is setting people with diabetes up for failure.

I absolutely hate being asked how controlled my diabetes is. How on earth can such a complex condition be explained in a yes or no question? If a healthcare professional expects me to evaluate my diabetes management with a one-word answer, then they are setting me up for failure. It’s like asking me if I completed the marathon last week, without showing any interest in the journey or preparation that I undertook to get myself past the finish line.

When I think about control in the context of managing diabetes, I interpret it as keeping my blood sugar levels between 4 and 8 mmol/L all of the time. That’s simply far too rigid of a goal for me.”

You can check out the full column at Diabetes Daily here.

Review: Extend Nutrition Bars

Earlier this year, I was sent a box of Extend Nutrition Bars from IBD Medical to try. I can’t say that I could muster too much enthusiasm for these, given that nutrition and exercise aren’t really my thing. However the folks at IBD Medical were still happy for me to give them a go and provide my own honest opinions. 

Extend Nutrition bars claim to “control” blood sugars for up to 9 hours when eaten at bedtime. Their blend of carbohydrates convert to glucose extremely slowly and therefore do not need an insulin bolus. They have been proven to reduce overnight hypoglycemia by up to 75% when eaten as a bedtime snack, and are also ideal as a snack inbetween meals.

It’s safe to say that I was pretty skeptical of these claims. I struggled to bring myself to actually put carbs into my mouth before bedtime and not bolus for them. Especially 22 whole grams of them. I rely on my basal rates to keep my blood glucose steady overnight, so I couldn’t really see any value in bedtime snacking.

I will preface my experiments by saying that bedtime blood sugars are extremely tricky to read. Evening meals tend to be the most variable, and can sometimes be difficult to carb count and accurately give insulin for. Often there might be delayed effects of afternoon snacks or evening meals that may require a follow up correction later on. However, I’m fairly confident in these observations.

When eaten before bed, the bars spiked my blood sugars by at least 6mmol within 2-3 hours of going into my mouth. If I hadn’t of set an alarm to check my blood sugar levels post-bars, I would have been in for a rude shock the next morning!

I also tried using one of the bars as a pre-walk snack. Usually walking will send my blood glucose low if I don’t make any adjustments to my basal rates or consume carbs. The yoghurt and berry bar sent me from a starting blood sugar of 7.7mmol to 11.6mmol within an hour of consumption.

I do genuinely believe that my experience with Extend Nutrition won’t be reflective of yours. I have learned from friends in the diabetes community that Malitol and other “non factor” carbs can have an impact on some people’s blood sugar levels. However I have also spoken with other type 1s who have tried these bars and experienced minimal impact on their blood sugars. Tammy over at Diabetes: Forever and Always also didn’t seem to experience a noticeable impact on her blood sugar levels in her review of the bars here.

The bars definitely had a slow effect on my blood glucose levels, meaning that they would be an ideal low glycemic index snack for someone with diabetes. It just wasn’t a 9 hour release of energy for me as the packet stated.

My initial verdict was that these bars would likely be great for people with type 2 diabetes who are still producing some insulin to cover the effect of the bars. However after watching this video explaining the science behind the bars, it seems that they were designed for someone taking insulin. Apparently, the non factor carbs in the bars convert to glucose so slowly that basal insulin would cover them.

I did put to IBD Medical questions about the claims of the bars. I was told that in the US, Extend Nutrition conducted a series of trials to underpin each claim for the bars. Meanwhile in Australia, the claims on the packaging have been registered as a general health claim with the Food Standards Australia and New Zealand.

While I don’t doubt the claims, everyone will respond differently to the ingredients in the bars. In my case, Extend Nutrition bars were unable to live up to their claims and control my blood sugars.

The most important deciding factor for me, however, would be the taste. Unfortunately, I wasn’t a huge fan. They tasted too artificially sweetened and gunky for me to want to buy them again. I’d much rather bolus insulin for a bar with oats, seeds, nuts, or even a drizzle of honey.

Extend Nutrition Bars were sold in Australia by IBD Medical, but since it’s taken me so long to write this blog, the link I was given no longer seems to be working. You can find out more about Extend Nutrition on their US website here. 

Disclosure: IBD Medical sent me a box of Extend Nutrition Bars to try. There was no expectation that I would blog about them, and all opinions expressed here are my own. 

Is Diabetes Normal?

In my latest column for Diabetes Daily, I’m pondering over whether I consider myself ‘normal’ as someone living with diabetes.

Since the day of my diagnosis, the notion of diabetes being “normal” has been drummed into me. I can still remember my father reassuring me that although I would be stuck with diabetes forever, I would still live a completely normal life. “The treatments have come so far, son. There will definitely be a cure in your lifetime.”

I rejected this notion that diabetes made me different. I hated seeing campaigns and stories that shed a light on some of the consequences of diabetes. I wanted so badly to project an empowering, superhero-like image of diabetes to the world, even if there were highs and lows along the way.

You can check out the full column here.

Diabetes Before 11am.

01:46 Frank stirs in his sleep. Glancing at the alarm clock, he reaches for his meter so that he can check his blood sugar. 10.1. He grabs his iPhone, opens the RapidCalc app and calculates a 2 unit correction to bring his blood sugar back down to 5.5. He reaches for his insulin pen, primes half a unit, then dials up another 2 units and sticks it into his arm. His diabuddies are starting to rub off on him…

07:21 Frank rouses once again. Morning light is streaming in from behind the closed vertical blinds. Feeling guilty that he slept over opportunities to follow up on that high blood sugar during the night, Frank reaches for his meter once again. He’s not feeling too hopeful. Blood sugar 11.9. Facepalm.

07:30 Frank opens the RapidCalc app on his iPhone, which reminds him that his 3 unit dose of Lantus insulin is overdue. It’s now been a week since Frank disconnected from his insulin pump, and he’s wondering whether it’s time to reconnect. While it’s been a great week, he’s really missing the customised basal rates and ease of correcting high blood sugars. Ah decisions, decisions.

07:43 After much deliberation over what to do, Frank ends up giving his 3 unit morning dose of Lantus. He opens up the RapidCalc app on his iPhone, and works out a five and a half unit dose of insulin. 2 units to cover his morning coffee. Double what he would normally give for 8g of carbohydrate, but necessary to cover morning insulin resistance that’s returned without his pump. The other three and a half units to bring his blood sugar back down to 5.5. Again, he primes half a unit and then injects five and a half units into his arm.

08:00 Frank finishes his morning coffee. Considering the high blood sugar, Frank decides against breakfast until his levels come down a little. Plus, he’s not feeling particularly hungry at this moment.

09:06 Too soon to test? Bugger it. Frank grabs a fresh test strip, sticks the test strip into his meter, pricks his finger with the lancing device and places blood on test strip. Blood sugar 9.4. Phew! Finally heading in the right direction.

10:00 Blood sugar 7.4. RapidCalc tells Frank he has 2 units of rapid acting insulin left to act. Should be okay.

10:34 Blood sugar 6.3. 1.2 units of rapid acting insulin left to act. Stomach rumbles. Oh – that’s right! Frank remembers that he hasn’t eaten breakfast yet. He heads into the kitchen, and opens and closes the fridge and cupboards. A slice of toast? Wait! What about the leftover croissants in his bag from Friday?

10:43 Opens the RapidCalc app on his iPhone, and calculates a 4 unit dose of insulin to cover the croissants. Primes half a unit of insulin from his pen, and then dials up 4 units. Sticks needle into his arm, but ouch! Blunt needle. Frank toughens up and sticks it into his arm once again, injecting the 4 units and carefully holding it there so that all of the insulin goes in.

10:50 With the criossants heating up in the microwave, Frank decides that he needs another coffee. It’s been one of those days. He heads back to his insulin pen and swaps out the blunt needle for a new one. Primes half a unit, dials up another unit to cover the coffee and injects it into his arm.

11:05 Frank is sitting in front of his computer, and satisfactory pre bolus time has elapsed. Frank decides that he needs to be a bit more disciplined with his pre bolusing to avoid stubborn high blood sugars like last night’s, and sticking with injections for another week will probably help him with that.

11:10 Frank decides he had better start eating those croissants before he goes low.

11.25 Frank thinks that this would make for the most boring blog post ever, and then decides that writing it in third person might make it a little less boring.

So many diabetes decisions before 11am! Time for a drink yet?

What Does Diabetes FEEL Like?

It feels incredibly permanent. It’s only been with me for the past seven and a half years, and yet I struggle to remember a life without it.

It feels incredibly monotonous. Checking my blood sugar. Weighing my lunch on the kitchen scales. Looking up carb counts on my iPhone. Pulling out my pump to give an insulin dose. Checking my blood sugar again. Pulling out my pump to glance at the insulin on board feature. Deliberating over a correction dose. It’s pretty hard to muster the enthusiasm to do the same thing over and over each day.

It feels extremely isolating. The twinges of jealousy that surface as I watch others my age who can live like there’s no tomorrow. Wondering if anyone around me can truly comprehend the burden of my condition.

It feels incredibly frustrating. One day can be perfect, while the next can be a complete trainwreck. I can do exactly the same thing that I did yesterday, and get a completely different result today. I can make a decision that makes complete sense on paper, and then stare at the result in disbelief.

It feels utterly exhausting. The physical and mental effort that this condition demands is huge, that there are days where I am left struggling to give my 100% to everything else.

It feels incredibly worrisome. Pushing thoughts to the back of my mind about what my future will look like. Wondering if I am doing enough today to ensure that I will live a healthy and complication free life.

It feels painful. Stabbing the tips of my already blistered fingers. Sticking a gigantic needle into my stomach to insert a new infusion site. Feeling the sting of insulin going into an overused area of skin tissue.

It feels ever so emotional. The journey from high to low and everything inbetween can be an emotional rollercoaster. It’s so hard not to let the numbers get to me.

It feels immensely guilt ridden. Pangs of guilt accompany every single decision I make that has an undesired outcome on my blood sugar.

It feels extremely disruptive. It doesn’t care if I’m trying to work, if I’m trying to sleep, or if I’m trying to chill on the weekend.

It feels incredibly close. Finding my tribe, who I can turn to when I’m having a shit day. Finding folks in the Diabetes Online Community, who I can reach out to at 3 in the morning while I’m waiting out a low blood sugar. Being able to hear the two most powerful words in the english language. ‘Me too.’ Making my world feel that much smaller.

It feels experienced. Every passing day arms me with that little bit more knowledge, that leaves me better equipped to deal with this condition. Like finding another piece in an incredibly difficult jigsaw puzzle.

It feels confident. Confidence to speak up for what I want from my healthcare professionals. Being my own advocate. Sharing what I feel passionate about. Finding my comfort zone when my condition has thrust me far from it.

It feels grateful. Grateful that thanks to modern medicine, tools and technology, my life has a far brighter outlook than it did a century ago.

It feels lucky. Lucky that I live in a country where insulin, test strips, pump consumables and healthcare won’t send me broke. That I have a supportive family and a job which affords me these privileges.

It also feels incredibly heartbreaking. Heartbreaking that in this day and age, people are still can’t access the basic tools and healthcare that they need to survive. Heartbreaking that these tools of survival are tied to income and extremely costly insurance premiums. Heartbreaking that without the subsidies I am afforded, these tools are extremely costly. Heartbreaking that people are still dying in some parts of the world because they cannot get their hands on the luxuries that I take for granted.