I have lived with diabetes now for almost 18 years. In some ways seems like a lifetime. In others I feel like a complete newbie to the ‘pancreatically-challenged’ world.
When a milestone approaches, (and my diabetes ‘coming of age’ feels like a milestone), I can’t help but reflect on some of the things I’ve learnt along the way. This makes me realise how far I have come and also, how far I have to go.
My diabetes management tools have certainly changed – and advanced – over the years. Today, I am part cyborg. Each day I wear an insulin pump to administer insulin and a continuous glucose monitor (CGM) to track glucose levels and trends. In my bag is the constant ‘back up plan’ in case of technology failure – a syringe, a vial of insulin and a blood glucose meter, which I also use for calibrating my CGM a couple of times a day.
For the first three years of living with Diabetes , I used insulin pens to deliver short- and long-acting insulin. The notion of injecting myself was never a problem for me. Needles have never bothered me. The day I was diagnosed, my treating doctor gave me my first dose of insulin, but that was the only time I allowed someone else to inject me with the drug. After that, I insisted on doing it myself.
But even with the strange idea of stabbing myself several times a day overcome, I knew that this was not the right way for me to treat my diabetes.
At the beginning of 2001, I made the decision to start using an insulin pump for a couple of reasons, the main one being that I wanted to have a baby and I believed it would give me the best chance of achieving the tight diabetes control expected (as dictated by every book I’d read and healthcare provider I’d spoken to) to have a healthy pregnancy and baby.
So, for the last fifteen years, I have had a small pager-like device attached to me delivering my insulin. I wouldn’t be without it and the thought of having to go back to multiple daily injections terrifies me.
I added CGM to my routine when it became available in Australia, and find that it is the best way for me to keep on top of the (often ridiculously senseless and unpredictable) changes in my glucose levels.
But this is all the very technical and clinical side to life with diabetes and while it is important, it is only part of it.
Diabetes is a lot more than injections and fancy devices. It is a lot more than the insulin I take or the numbers my BGL meter spits out at me. The technology is not difficult to use – I find it quite intuitive and simple.
For me the biggest – and most difficult – part of living with diabetes is…well…life. Diabetes is huge, it is demanding and it doesn’t take a break. And when trying to live a full life, surrounded by wonderful, loving and loved people, doing a job that can be tough at times and always busy, and do all the other things that make life a joy, carving out a space for something that is neither enjoyable nor particularly rewarding is trying and wearisome.
Diabetes expects a lot and is a thankless master, and working out how to co-exist is something that – almost 18 years in – I still haven’t nailed. There are times when I feel that diabetes is really in its place and I am managing quite well. But a lot of the time, I simply am not coping well at all.
It is easy to start to feel overwhelmed, overcome and defeated. It is a very slippery slope to feeling burnt out; where the button pushing becomes too hard; the numbers become too confusing and the ‘hugeness’ of living alongside a chronic health condition is too much. And it happens regularly. When my defenses are down, I struggle. When I am dealing with other personal or professional issues, diabetes starts to matter less because I simply don’t have the headspace to deal with it.
Over the years, I have learnt to recognise some of the triggers that start me on that downward slide. Sometimes I manage to stop it in its tracks. Other times, the burnout and lack of motivation takes time to overcome.
When I was first diagnosed, there was not even a mention about this side of diabetes. It was all about the clinical aspects of the condition. I wish back then someone had mentioned – even if just in the tiniest way – that there was another side. And even more so, to have said ‘it’s okay to feel that way.’
Perhaps that is the most valuable lesson I have learnt in my almost 18 years. Perhaps accepting that feeling guilty, overwhelmed, fearful and ‘over it’ is just part and parcel of diabetes; that when the feelings hit, it’s okay.
But the thing I wish I had been told was that I was not alone in feeling like this, because reaching out to others and talking about it has helped me understand and accept that how I feel when I am struggling is perfectly reasonable.
Renza Scibilia – Biography
Renza Scibilia has lived with type 1 diabetes since April 1998. She is a well-known patient advocate and peer leader for people with diabetes and promotes a patient-centred approach to healthcare, and in the development of diabetes information, resources and technologies.
Renza works for a national diabetes organisation and a regular speaker at health conferences in Australia and around the world. She is a well-known member of the diabetes online community. She co-founded the #OzDOC community for Australians with diabetes. Renza is well-versed in social media, its influence on people with chronic health conditions and application in peer support.
She is the creator/author of one of Australia’s most widely-read patient blogs, Diabetogenic, (www.diabetogenic.wordpress.com).
Renza lives in Melbourne with her musician husband, their eleven year-old daughter and a menagerie of pets. When not thinking about diabetes, Renza can be found drinking coffee, wandering the streets of New York, eating Nutella and wearing stripes – frequently all at once!