Unscripted Moments: Life With Type One Diabetes Unfiltered

My journey as a type one diabetic started when I was 20 months old. Truthfully, I don’t know a life without diabetes. It has always been a part of me and has shaped a great deal of who I am.

I often think about what life would be like with a cure. How I would feel not having diabetes. Joy and relief are obvious feelings, but I think I would also become overwhelmed with the sudden freed up brain space and extreme change in routines. I would truly have to learn how to live again. 

Don’t get me wrong though, I’d be happy to do it. 

When I was first diagnosed, there were no devices with alerts or alarms, and I was just a baby who couldn’t tell my parents how I was feeling. In fact the only reason I was even diagnosed was because of my mom's intuition that a baby, (her first at 23) shouldn’t cry as much as I was. The first doctor she went to essentially told her she just got a bad baby, sorry about your luck. Thankfully she got a second opinion, it could very well have saved my life. 

Couple that with the fact my mom was 8 months pregnant with my brother and it still shocks me to this day that they went on to have a third child. 

This is a monitor that was in use when I was diagnosed and while at the time it was a huge step forward, looking back it’s amazing how far we’ve come. This unit required incubation of the test strip, and about five minutes to get a reading. It was also very sensitive to touch and the slightest movement could mean having to restart the process. 

For the majority of my childhood and as a young adult, I administered insulin by syringe. For many years, my long-acting insulin required mixing solutions in just the right way. None of us could have ever imagined where we would end up, mostly because we believed a cure was just 5 years away (an ongoing joke in the diabetes community). As I write this, I’m looking at my phone where I have information being updated every 5 minutes from my continuous glucose monitor on my arm about my blood glucose levels. I have information from my insulin pump as well as my looping app telling me how many carbs I have actively working in my system, how much insulin is currently working in my body, and a predictive graph showing where the program anticipates my blood glucose levels over the next 5 hours.

In the context of where I’ve been, this is mind-blowing.

It’s also, incredibly overwhelming. 

This amount of information allows me to have tighter control than ever, but it also requires the constant monitoring and manipulation of data points including carb ratios, basal rates, insulin sensitivities, exercise, stress, sleep, weather and more. My brain is CONSTANTLY thinking about diabetes. I don’t ever get a break. 

Additionally, both my CGM and my looping app have notifications to alert me of potential trouble. On any given day I can get as many as 20 alerts just from my devices. Those alerts are important because lets be real they keep me alive, but also:

“Notifications activate the brain's reward system, releasing dopamine and increasing arousal and distraction. This continuous stimulation can decrease productivity and general mental health by causing stress, impairing focus, and negatively affecting cognitive function.”

The second I hear one of my alarms, I immediately get more stressed. I don’t wear a heart monitor of any kind, but I imagine you would see the spikes in my heart rate and be able to directly correlate them to my devices alerts.

And all of this goes on mostly unnoticed or recognized by other people. 

Diabetes also comes with the knowledge that your body is deteriorating faster than the average persons. We’re constantly monitored and warned against heart issues, circulation issues, blindness, amputation, stomach issues and more. I’d be lying if I said I hadn’t thought about it … a lot.

On the one hand, any of us are only ever guaranteed this moment right now. But on the other, is there a point to me working towards retirement when there’s a very real possibility I won’t be healthy enough to enjoy it?

So I live in an almost constant state of worry about the health of my body. What is my bg? Where am I trending? Have I worked out enough? Eaten well enough? I need to get bloodwork and book that eye test, shit when does my pump expire? Will I be out of the house or at home?

It’s exhausting. Not to mention the times where it wakes me up in the night and I can’t sleep for hours while my bg regulates. 

Also not to mention my ADHD which has made some things more difficult over the years (I can’t tell you how many times I’ve forgotten my insulin and then been made to feel like an idiot). 

I’m grateful for how far we’ve come and this blog is my attempt at using my platform to instill a little understanding and perhaps empathy for the person in your life you may know with diabetes. It’s mentally taxing and we’re all doing our best.

The good news is, there are a lot of really smart people doing a lot of really great research on Type 1 Diabetes. If you’d like to learn more or donate, I recommend the Alberta Diabetes Foundation.