Sometimes I feel like my life is a series of bells, buzzers, beeps and whistles….the constant beeps of the blood glucose machine as it tells me it is on, and then that it is ok to add a drop of my blood. The beeps of my insulin pump as I take a bolus, and the way it screams at me when it is running out of insulin, or battery life, or worse still, has a blockage somewhere in a line and shouts “prime pump no delivery!!!!”, right when I am driving the car, or in the middle of the supermarket…. The 1 or 2 times a night that my mobile phone alarm goes off to tell me to wake up and check my blood glucose, and the inevitable result if I don’t, of that being the exact night I have a hypo or my pump site fails and I wake clutching for water, mouth like the bottom of a bird cage, nausea in the pit of my stomach, bladder aching. On the occasions I have road tested continuous glucose monitoring (CGM) there was the urgent beeping in the night to say my blood glucose was dropping too fast, only to discover on a finger prick that wasn’t the case, and yet, I could not sleep for the worry of “what if the CGM machine was right??”….and so, due to that and the costs involved, I never returned to trial it again. Yet..
Yes life with diabetes can feel like a series of bells, buzzers, beeps and whistles and whilst empowering, it can feel exhausting and incredibly intrusive. You may be the carer of a child with diabetes and find these buzzers and bells reassuring, they allow you to take some sleep yourself at night, with the knowledge that you will be alerted. As a person with diabetes you may also sleep better, go through each day more confident in the knowledge that you can see some of what is happening inside your body and take appropriate action. As a person who has suffered with anxiety, checking my blood glucose has become more than a physical safety net, it is a mental and emotional one. It makes me feel secure, safe, to know what is going on, whereas in my teens I wanted nothing but to bury my head in the sand. I have talked to many people who feel the same, especially when the results are not what they want them to be.
Because that is the crux of it isn’t it? Knowledge is power and in this case, bells and buzzers are also your safety net. They allow you to breathe easier, to manage better. Not that long ago however, we had none of these things. I remember having to wee into a container and then test that, to see if I had too much glucose in my body, far too late to really make much of a difference to the damage that was happening, and even then the insulin injected to deal with it was at a set time, in a set amount, so there was really no point in the whole exercise.
When blood glucose machines came on the scene shortly after I was diagnosed, they were not the 5 second fancy pants machines of today, but a hulking great thing, that took a few minutes to process and involved squirt bottles of water, and drying off the strips and waiting for the results. And yet still we did not really work out our insulin doses based on that ourselves. We simply trotted off to the diabetes specialist every 3 months and let them make the decisions about changes to our management.
Despite their annoyance, with all of the advances in CGM systems, flash glucose monitoring and the drive towards the holy grail of a closed loop system, we rely on these beeps, buzzers, bells and whistles, to help us make decisions about our management. Because we now operate on a much more flexible, balanced way of life, we can choose to deal with the results in real time, we can take control and make decisions. While annoying and even distressing at times, it allows us to feel empowered and in control of our own health.
The recent announcement that the Federal Government are honouring their election promise to make continuous glucose monitoring systems free for some children with diabetes, was a win for all of us. Whilst not accounting for the fact that those children grow up to become adults, often with even more difficult to manage type 1 diabetes, and an even greater need for CGMS, it is a start. While it is only for 4000 “eligible” children a year, it is a start. And we have to start somewhere – every achievement starts with that first step. I want to say thank you to all those who have been working so hard to get us here. I look forward to the day that all of us with type 1 diabetes can sleep more soundly knowing that the buzzing and beeps that may save our life and our health have got our back.
And in any case, they are still FAR less annoying than those bloody notifications from Facebook! At least you can shut those off without fear of missing a hypo!