What was the day you were diagnosed with diabetes, or your child was diagnosed like? Do you remember it and what was it like for you?
I remember being very sick for many weeks on a family holiday and not knowing what was wrong with me. My mother suspected diabetes, and a trip to the doctor confirmed her fears. I was diagnosed with type 1 diabetes in 1979. Life following that day was a whirlwind of tests and needles and learning. It was also a whirlwind of fear, hate, anxiety and sadness. This was experienced by my family too and many people talk about a period of grief following a diagnosis of diabetes.
That is a normal reaction to a very abnormal situation – being told you have a disease that will never go away and may cause all sorts of awful complications and shorten your life by at least 15 – 20 yrs. It messes with your head. Yet most of us get on with life, I mean what else are you going to do? You could stay in the corner and spend the rest of your days sad, or you could come through the other side. It does not mean you won’t have bad and sad days, and in fact we know people with diabetes experience more of these days than those who don’t have diabetes. It’s a thing.
But most of us live full and productive lives. I have 3 boys, 3 businesses and have just been awarded a finalist position in the Telstra Business Women’s Awards. I have crap days. I have gastroparesis and complicated health needs, but these do not stop me LIVING, and in fact probably living MORE than some people who have no health conditions to manage.
And I think that is the key to survival with diabetes – living. You can not let it drive the car, you can not let it be the only thing you think about, or talk about, or care about. You must expand your life so diabetes is a small bit, which sometimes takes up more space, but never takes up all the space. That is when you feel like you are choking, can not breathe.
I just read some news published in the Medical Journal of Australia, that the life expectancy of people with type 1 diabetes has improved significantly in recent years, thanks to technological advances meaning we can get tighter management of our blood glucose levels. The findings come from a study by a team of endocrinologists at the Royal Melbourne Hospital.
Although there are twice as many cases of type 1 diabetes as there were 20 years ago, there has also been a response in the growth of technological advances in its treatment: we have more accurate blood glucose monitors than we used to have, insulin pumps and continuous glucose monitors which all add a longer life expectancy for those of us with type 1 diabetes. However, type 1 diabetes is still associated with a shorter life expectancy than people without diabetes.
We may have improved life expectancy, but we still don’t have it right as far as I am concerned. Blood glucose monitors with errors that are not acceptable, and continuous glucose monitors (CGMS) that are out of reach cost wise for many of us, need sorting to be totally error free, and lobbying to include CGMS on the NDSS needs to ramp up, so they are affordable to all of us.
We have certainly come a long way baby and we have to take a positive approach to life with diabetes and grab it with both hands. But we also need those clever people to keep on working to make life even better, because some days you just need a little help from your friends