health

'My chronic illness means I have to make 180 extra decisions a day. Here's what I want you to know.'

Having a chronic illness like type 1 diabetes is a full-time job, 365, 24/7. And I'm employee number one. 

Diagnosed at age seven, it's hard to remember a time when my daily conscience stream didn't include calculating insulin doses for meals, remembering to test my blood sugar, counting carbohydrates, predicting how a certain food or activity would impact my blood glucose levels, or knowing when my next site change is. 

The truth is, there are no days off from this disease. And sometimes it can feel isolating because I don't "look sick".

Type 1 is actually an autoimmune disease. That means my body mistakenly thought the cells that make insulin in my pancreas were "foreign". My immune system attacks these "invaders" and takes my ability to make insulin away. That's a problem. We all need the hormone insulin to live. 

Insulin is like a key that opens cells and lets glucose (sugar) enter to fuel the body up. Without insulin, blood sugar rises to dangerous levels and can affect every organ of the body. For someone with Type 1 learning to think like a pancreas is crucial to living life well with this condition. Hence, the boatload of decisions that are required on a daily basis.

According to a Stanford University study, people living with diabetes have to make an extra 180 decisions a day compared to an average person. Oftentimes, these decisions are critical to our health and wellbeing and sometimes this can lead to decision fatigue

Of course, people with diabetes can have full, happy, healthy lives, but it does take careful planning and a LOT of patience. 

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Here's exactly what I want you to know as a person living with diabetes 

1. Every day is different.

I never give the same amount of insulin on any given day. Diabetes, in general, is not a food problem. It is a complicated metabolic problem driven by how my body is using insulin at any given moment. Meaning? I must weigh the impact of food, medicine, and activity to prevent low and high blood sugars... all day long. Every single day.

While you're here, learn more about Diabetes below. Post continues after video.


Video via Mamamia.

2. I can't just go for a run.

Exercise is an important tool to help manage blood sugars. In the best world, it lowers blood sugar by making muscles more sensitive to insulin. But it's not as simple as going out for a run. I have to consider what type of exercise I'm doing and how it may impact my blood sugars.

Is it high intensity (anaerobic) and will it cause my blood sugars to spike? How about a low-impact (aerobic) based exercise that tends to drop my blood sugars? Did I remember to bring a fast-acting source of sugar in case I go low? When was the last time I injected insulin?

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I have to consider the insulin I have "on board" so I can prevent a hypoglycaemic (low) episode. For example, a long hike through the beautiful Australian bush can keep my muscles sensitive to insulin for 12 to 24 hours. Now I have to be aware of delayed hypoglycaemia and develop a strategy for prevention. Do I need less insulin? How much less? 20 per cent, 30 per cent less? 

There is an element of playing the educated guessing game that keeps a person with diabetes on the edge of their seat to see if the decisions they made pay off.

3. I rarely sleep through the night.

Living with diabetes is 24/7, and that means sometimes I'm up at 2am treating a low blood sugar or giving insulin to bring my blood sugars back down. Many decisions go into preventing sleep disruption, but no matter how hard I try, diabetes can have a mind of its own. 

My diabetes technology has saved my life multiple times. There's no sleeping through my insulin pump alarms.

4. I wear a mini-computer on my body every day.

Diabetes technology has made my life more spontaneous, but this creates a whole new area when it comes to decision-making. I use an insulin pump and a continuous glucose monitor that needs to be changed every three to seven days and placed on a new 'site'. I wear these on my body in various locations and am always considering how insulin will absorb. 

Me, on my wedding day, doing my thing! Image: Supplied.

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My insulin pump is a mini-computer that contains information on insulin dosing before meals (bolus) and between meals (basal). Next time you're trying to solve a computer problem just remember that for those relying on an external device and their own brain, and it's not as easy as "Googling" a solution!

5. I see numbers when I look at food.

Food raises all our blood sugar after we eat a meal. But for me, I must consider how quickly that food will digest and raise my blood sugar.

Is it higher in fat? This will keep my glucose elevated for a longer period of time. Will I need more insulin in a couple of hours to correct my blood sugars back to target? This means I also need to know the difference between complex and simple carbohydrates and how they impact the uptake of glucose. And what about proteins? For the most part, they add a blood sugar-stabilising factor, but are they all the same? And will I need less insulin for a low-carb/high-protein meal?

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A person with diabetes sees numbers when they look at their meal. Before I eat I'm always thinking, what's my blood sugar before meals? How many carbohydrates am I consuming? How much insulin will I need? Do I need less if I'm planning an after-meal walk

6. Stress can become dangerous, fast.

What a lot of people might not know is just how big of a factor stress plays in my day-to-day life — and it's a huge risk when it comes to elevating blood sugar. And it's not just the stress that can come from sitting in traffic or meeting work deadlines. Everything from an infection to becoming ill or going through surgery can create major stressors and for those who don't make insulin, this can become really dangerous pretty fast. 

I have to be able to recognise when this is happening and make decisions to prevent emergency room visits or hospitalisations. The risk of DKA (diabetic ketoacidosis) is real and decisions need to be made to prevent it from progressing. 

I need to know how to test for ketones, how to resolve ketones and when to call a GP — all important decisions that could ultimately save my life.

7. Travelling can be insanely hard.

While travel is usually a great way to deal with stress, unfortunately, my pancreas doesn't get the memo. 

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I still need insulin when I'm on vacation which requires more decisions when it comes to how I'm going to manage that far from home. While my diabetes technology enables more flexibility and convenience when travelling, it also presents its own set of challenges.

Travelling with diabetes has its own challenges. Image: Supplied.

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At the top of that list is all the extra supplies I need. I have to change these sites every three to seven days. The recommendation is to take two to three times the amount of diabetes supplies you normally would use on a daily basis. And this stuff is bulky. You can imagine how much room that would take up if you're going on a two-week trip (read: a LOT). 

I've struggled to find a packing solution that stores all my medical gear safely and neatly. Ziplock bags didn't provide enough protection and more than once I ended up with damaged needles that couldn't be used — not a good time when you're in a different country.

I decided to take my love of fashion and lived experience to create a product that solved my problem. I launched One2One Diabetes to help other diabetic travellers, creating a range of bags that are both beautiful, functional and completely customisable (because not everyone manages their diabetes the same way). Tough decisions don't go away when travelling, but having everything in one place can lighten the burden.

I decided to create a product that solved my problem. Image: Supplied.

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It's easy to see how decision overload can lead to fatigue and I only just scratched the surface. Education is so important when it comes to managing a chronic condition like diabetes. 

When you have diabetes, you are your own "experiment" and every day is a new day to learn from your successes and failures. 

If you're someone who is struggling with diabetes, meet with a certified diabetes educator and don't forget — you're not alone! 

Do you have diabetes? What are some things you've learnt? Share with us in the comment section below.

Feature image: Supplied.

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