And fuck Diabetes
In 2015, right around her sixth birthday, she lost a bucket load of weight. Her mother and I were really worried. She had unusually started wetting the bed through the night and was always drinking water. Her lips started to dry out and no amount of moisturiser would bring them to life. One week later we were in the hospital learning about Type 1 Diabetes (T1D). I learnt then that she was now going to be responsible for her health in a way that no six-year-old should ever have to worry about. I learnt that I had to be hard on my daughter. Every day she does some things well, some things poorly and despite all this, I am so proud of her.
What is Type 1 Diabetes?
So, imagine that you are living with a disease that if you are low you can die today, or high you could have adverse health effects in the future and face a compromised lifestyle or early death.
And you are 12 years old.
Can you think about your priorities as a 12-year-old?
Having a long and healthy life was probably not the highest on the list.
Your body is so complicated. It truly is a system of systems with so many interdependencies. My daughter got a viral infection just before her sixth birthday, at one stage we thought we might not be able to have the party. She was quite unwell.
At that stage, her immune system kicked into gear to fight these viral infection invaders. Like an elite soldier group, they started storming every room and knocking down the infection. But unlike the way the elite soldier defeats its enemies, the immune system sends antibodies that latch on to anything that doesn’t look like it belongs.
This is the cause of many different diseases, but for us, those anti-bodies latched onto the beta cells in my daughter’s pancreas. Then they systematically eliminated them all.
If your body has none of these beta cells in its pancreas, it can no longer create insulin. Insulin is a hormone your body uses to transport glucose to your tissue.
She lost 10 kilograms in 3 weeks as a 6-year-old. Her lips were dried out and cracked, they sort of looked like the tread of your bike tyre.
Now she relies on externally injected insulin (which is ashamedly expensive in some parts of the world), at a rate matched to her intake of carbohydrates and lower-level steady drip-feed. If either of these delivered levels is slightly out of balance, her blood glucose level goes dangerously high, or very dangerously low.
Think of it as a scale, her bodies requirements for insulin on one side (variable because of food containing carbohydrates, sleep, stress, hormones, body temperature, physical activity, some medication, time of day, illness, etc.), and the amount of delivered insulin on the other. To address some of them, you need a small stream onto the insulin side. To address food and some others, you need a big weight of insulin delivered all at once. As all of these factors outside of food change, the pivot point of the scales move.
What you did to balance it today, will not work the same way tomorrow.
To work out if you are getting it right, you need to stab a needle into your flesh and test the blood (or use a continuous glucose monitor that reacts with the interstitial fluid between the fat layer and the muscle by leaving a sensor inserted under your skin).
Risks of high and low
So, here’s the thing. If you are too high for too long, you could die. If you are too low for too long, you could die.
Being low feels like shit, most diabetics are good at identifying it as they cross over the lower ‘normal’ level (hypoglycemia, diabetics call this ‘having a hypo’ or ‘a low’). As you get closer and closer to zero, your body starts to shut down. All of your tissue needs glucose to function.
My daughter often tells me ‘she is feeling shaky’. I don’t really know what that means to feel, but she can pick when she is crossing into the lower range of blood sugar. If it gets lower, her peripheral vision starts to go and her legs feel weak. She often has to be helped to move somewhere safe and have some food. If she gets too low to eat, she needs an emergency injection to bring her back in the safe range.
This is the danger of a low. Diabetics avoid them. If you get so low that your brain starts to shut down you will have a seizure and, if left untreated, you will die. They call this ‘dead-in-bed’ syndrome as it commonly happens when you are asleep (scary hey?).
While being low has immediate short term risk, being high comes with medium and long term risks. If you are high, you have excessive glucose in your bloodstream (hyperglycaemia, or high).
If you remember back to my story of when my daughter was diagnosed; the weight loss, the drinking water and parched lips. There was another thing that was happening, her body was producing ketones. In low numbers ketones are fine (keto diet) but in high levels, they are very dangerous.
My daughter has spent a few nights in the hospital with elevated ketones. Once from an infected insulin site and once from an unassociated fever. Each time here ketones were elevated, but not critically high enough to cause seizures, but they can rise quickly.
Ketone induced seizures can lead to death.
The other risk to high blood sugars is longer term. Imagine the sugar molecules (glucose) within your bloodstream a little like the proverbial ‘Bull in a China Shop’.
They are large clumsy molecules that bounce around and bump into everything. Over time, enough of these collisions start to affect the more sensitive or hardest working parts of your bodies.
It is a tight-rope, and because of how shitty feeling low feels, most diabetics tend to prefer to run a little higher. This is short-term safe, but long term dangerous.
My Daughters Journey
As technology has advanced, so have the diabetes management options. The emergence of continuous glucose monitors and connected insulin pumps have taken some of the stress out of diabetes management. Emerging research is aimed at reducing this further.
My daughter has transitioned from a diabetic on manual daily injections (MDI) to using an insulin pump. From 12–15 finger-pricks to check blood sugars, to changing a sensor for a continuous glucose monitor every 7 days and only doing two daily fingerpricks. She has changed from around 150 pieces of metal piercing her skin each week, to around 20. Still a lot, but reduced.
However, as her diabetes management workload has decreased, so has her desire to manage what she now has to do.
Parents of diabetics children, and adult diabetics talk of diabetic burnout.
A plate of food can have 100’s of grams of carbohydrates or none. A really healthy looking salad at a restaurant may be hiding a dangerous high in dressing and croutons or vegetables.
You have to guess each time and work out how much insulin to bolus (big delivery to counteract the food) and balance this with the temperature, the amount of protein in the meal, the amount of exercise you are planning, whether you are a little sick, what your current blood sugars are, etc.
Making hundreds of decisions a day about how to manage your health is debilitating. It causes decision fatigue. Even though a finger prick is not that difficult to complete, there is so much frustration about having to do it. Each extra thing is increasingly painful.
I realise that in the scope of permanent disease, a manageable one is better. But, I can say that living with it as an everpresent is exceptionally draining.
Since she was diagnosed at six years of age, my daughter has had to make decisions that always balance how long you want to live, with being an in the moment child.
This is a difficult thing to deal with. There are days when we all want to just give up on all our responsibilities, she has to continue to think about the ups and downs of her blood sugars and their impact on her health, feelings and lifestyle.
Before she goes to bed she needs to make sure her sugars are within range and, to the best of her ability, understand whether there is an imbalance in the amount of carbohydrates under digestion in her system and the amount of active insulin in her body to counteract it.
Before exercise, she needs to understand the intensity and duration of the exercise and how much free glucose she has onboard to supply her muscles and organs during that exercise. Diabetics can still be successful athletes, but they need to take into consideration several other factors prior to competing and exercising.
The two hours after eating are the important times for diabetics, if you have bolused too much too early (as some carbohydrates are longer acting (low Glycemic Index (GI)), they will go low and have to eat more. Then probably go high later. If they have under-bolused and delivered to little insulin, they will go high. But you cannot really tell if you have it right in the first two hours as the body and the insulin takes a while to sync up and level out.
Now imagine to have to run all of these calculations in your head at any point in time, while trying to be successful at school, maintain a friends network, do your chores and — still be a kid.
This is the reason I am so hard on my daughter. Like any parent, you are hard on your children so that they are ready for when they no longer have a parent there to remind them about things. When they have to work out what to do next all by themselves. When they need to decide about doing the hard thing over the easy thing.
My daughter has a fight on her hands. She has to run innumerable calculations, think about what she may want to eat 15 minutes early, work out if she needs to eat before exercise, make sure she isn’t going to die through the night, ensure that she will not go into early kidney, liver and eye failure. Then get on with life.
It isn’t the hardest thing in the world, but it is far from the easy road I have had to walk. I am scared that we have failed her in innumerable ways. But I am certain that if we work hard to build the right habit loops, we can succeed in many others.
My daughter has Type 1 diabetes, it is hard on her, it is hard on those around her, it is hard. The researchers and experts are working hard to identify a way to mitigate the impact on Type 1 sufferers. They may even find a cure at some point. In the meantime, we need to do the best we can as often as we can.
So, I am hard on my daughter, but she does make me proud. Balancing all that she has to, and working through the complexities of life like any other 12-year-old is hard. But I know that I need to be hard on her so she can live a long and happy life because of the habits she has established under our care.
I know that this is the type of adversity that builds resilience and grit.
I grew up on a small farm. Doing farm chores, chopping wood (so much wood) and learning that there are times to work hard, and times to slow down has been invaluable in my professional career.
My daughter is smart and generous. Two very admirable traits. But having diabetes will give her an unfair advantage later in life. As her teenage friends start to realise how hard life can be, my daughter has already had a leg up. As they are finding their feet and adapting to consider a greater influence of things, my daughter has already developed that strength.
So, while diabetes is hard, developing the mindset of resilience will become a superpower. For this reason, even though there are moments where the burden of it all seems too much and you just want to quit, she will get up and do it just because she has to. She will grow stronger each day. Stronger than me, stronger than those of us who have not battled this adversity.
So some days she fails, some days she kicks butt. But each day she gets a little stronger, a little more resilient, a little more like a superhero. For this reason, she makes me so, so proud.
I’m a writer with a keen curiosity for people, human nature, leadership and growth. I have a 12-year-old Diabetic Daughter who is a beautiful, strong-willed, challenge who is one-part kicking butt and one-part getting her butt kicked. You can learn more about the research to overcome this shitty disease at the JDRF.org whose vision is a world without Type 1 Diabetes.