It was Melbourne Cup Day, 1989. I sat on the bed in the Drs surgery, swinging my legs, waiting, whilst the Dr rang the local hospital to let them know I would be coming in. I was nine years old, and our GP had just given me a finger prick test and diagnosed me with Insulin Dependent Diabetes. (Also known at Type One Diabetes or Juvenile Diabetes) I had no idea that my life would never be the same again.
Several hours later, I lay in a hospital bed for the first time in my life. My parents had just left, and I was sobbing, that hiccupping crying, where you can’t get any words out. Two nurses walked into my room. The younger nurse told me not to worry, that she would hold my hand whilst I had an injection of insulin. The older, scarier nurse told her, “No you won’t. Jane is going to give it to herself”. I hated her in that moment, but after I had successfully given myself my first injection, I stopped crying. I was so proud of myself, I skipped down the hall to excitedly call my mum, and tell her that I’d done it all by myself. What a bittersweet phone call that must have been for my mother. Her nine year old daughter so excited and proud that she had given herself an injection. The first injection of Insulin, which would be needed every day, several times a day, for the rest of her life.
That nurse did me a huge service that day. From that moment on, I never let anyone else do my injections. It actually afforded me much more freedom than other children diagnosed at that age, who had to rely on their parents to inject them. I took charge of my disease right from the start. I was responsible for checking my own blood glucose levels, pricking my finger several times a day. I would count carbohydrates, to make sure I was eating the correct amount of food, for the amount of insulin I was taking. At the start I had two injections a day, which increased to four once I switched from syringes to a ‘pen’ system, already preloaded with insulin.
I used to think that it was a blessing to be diagnosed so young, I adjusted quickly, and can barely remember life before Diabetes. The problem was though, at that age, long term complications are a difficult concept to grasp. As I moved into my teenage years, I wanted to ‘fit in’. I wanted to eat the same food as everyone else. I didn’t want to be the ‘sick’ kid who needed injections to live. I couldn’t be bothered doing blood tests, and would often lie to my parents about my sugar levels, as I would have secretly eaten chocolate or lollies, or skipped an insulin injection, sending my readings sky high.
I wish I could say that as I got older, I matured, and started taking better care of my Diabetes, but unfortunately, that wasn’t the case. I started smoking, and in my later teens, drinking. Drs would still try and tell me about the risk of long term complications, but I chose to live, somewhat, in a state of denial. Once I moved out of home, I essentially stopped testing my sugars altogether. With no one to ride me about it, I basically lived like I wasn’t a Diabetic. I would still have my insulin injections, but often at the wrong times, just when I could squeeze them in around whatever else I was doing. I ate what I wanted. By the time I was in my 20’s, my life was in such a spiral of dysfunction, having Diabetes seemed like the least of my problems.
The problem with Diabetes is, if you ignore it, it won’t go away. It will kill you. Slowly. Those long term complications that the Drs kept banging on about include blindness, gangrene, organ failure.
When I found out I was pregnant in 2010, suddenly diabetes wasn’t just something in the background of my life. It became impossible to ignore once I realised the risk it posed to my unborn baby. Sadly, in a way, it took being responsible for another person’s body, for me to start looking after my own. Blood testing became a priority; I would check my sugar levels nearly every hour. I was having up to seven insulin injection a day. I went back to counting carbs again, watching every single thing I ate.
At around five months pregnant, I was diagnosed as having developed Diabetic Retinopathy, an eye condition that lead to abnormal blood vessels growing in my eyes, then haemorrhaging. I could have gone blind. If I have another pregnancy, there is a very high risk I will go blind. My vision is so affected that I can no longer drive. Diabetic Retinopathy is a risk for all pregnant diabetic women. Was I more at risk because I didn’t look after my Diabetes properly before pregnancy? Maybe. Maybe not. It’s impossible to predict, but I assure you, I wish it was something I didn’t have to even consider.
My beautiful daughter was born safely, albeit, two months early. She is a blessing, and I am so lucky to have her. My body owed me nothing, after the way I had treated it for so many years.
Twenty four years after diagnosis, and I still have a complicated relationship with Diabetes. I lapsed a lot after Milla was born. Once I stopped expressing, I became less vigilant with blood tests again. I stopped seeing my endocrinologist (Diabetes specialist). I blame my Diabetes for not being able to drive, for not being able to safely attempt another pregnancy. I’m angry. It’s not fair. I feel all those emotions that I wasn’t capable of when I was diagnosed at nine years old. The trouble is now, ‘long term complications’ are not some far away abstract concepts. They are on my door step.
I am a mother and a wife, and I owe it to my family to take this disease seriously. I can’t change what I’ve done in the past, the damage that may already be done. I can change what I do from this moment on though. It’s time to start valuing my life as much as I value the lives of my loved ones.
*This post was brought to you in partnership with Accu-Chek blood glucose monitors*