Diabetes Denial.

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.

diabetes suplies

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*

Linking up with My Home Truths for

I Must Confess

30 comments on “Diabetes Denial.

  • Emily @ Have a laugh on me , Direct link to comment

    Wow Jane – you sure have had some hurdles! And that is very scary about your sight, must have been quite confronting. I’m sure it must be such a mission to never be able to just eat what you want and when you want. What a great role model you are for those who have just been diagnosed – I bet the Diabetes association would love to hear your story – it is very touching. Emily x
    Emily @ Have a laugh on me recently posted…I just got a written warning from my 22-month-old!My Profile

  • Wendy Parks , Direct link to comment

    Thank you so much for sharing your story! How brave you are. I cant imagine having to inject myself every day – I have done it for IVF and that was difficult.
    Please keep sharing your story as you conquer each challenge that comes your way – you are an inspiration xx
    Wendy Parks recently posted…Water Buddies – Review and GiveawayMy Profile

  • Melissa {Suger} , Direct link to comment

    Thank you for sharing your story. I’m constantly curious about people who live with this sort of diagnos. It takes guts to admit your failings and you’ve done so here in a way that is inspiring and without being too hard on yourself for the choices you made at the time. I love that. It’s really inspiring.
    Melissa {Suger} recently posted…Comfortably Floral {She Wore What}My Profile

  • Jill Butler , Direct link to comment

    What a beautifully written post….very moving and honest. I hope you find a way to come to terms with your diabetes and manage it successfully.

  • ally , Direct link to comment

    I am in awe of kids and teenagers who manage their diabetes well when all around us adults fail to take their own health seriously. Noone can be expected to think long term at that age…and yet as you say the consequences are dramatic and far reaching.
    Good on you for facing it now – head on and bravely

    I had gestational diabetes in all 3 pregnancies and consider myself very lucky that I was able to control it with diet and that my babies were healthy

  • Lisa - lybliss , Direct link to comment

    Thankyou for being so honest. Diabetes is not just a matter of pricking your finger a couple of times and eating a few jelly beans. The long term implications are scary. Of course battling the ‘what-ifs’ in the wee small hours is inevitable but it’s really lovely that you can see the positive reasons for taking care of yourself. xxx
    Lisa – lybliss recently posted…Mummies can work too …. Weekend WriterMy Profile

  • Cassie , Direct link to comment

    Aagh. Your post has somewhat freaked me out! My daughter was recently diagnosed with coeliac disease, which, while different to diabetes, also has life-long impacts on how she will eat. At the moment, it’s kind of easy – as we (her parents) can control her diet. But what happens when she becomes a teenager – and like you Jane – wants to just ‘fit in’ with everyone else!

    • Hesitant Housewife , Direct link to comment

      Cassie, I also have coeliac disease, I was diagnosed at 25. It is hard at times, but I have seen a huge increase in the range of gluten free foods available in the last 8 years. Also restaurants are provided a lot more gluten free meals on their menus. Hopefully by the time your daughter is a teenager, there will be even more things around that she can eat, so it wont be such a big deal for her xx
      Hesitant Housewife recently posted…Diabetes Denial.My Profile

      • Isabel , Direct link to comment

        Hi Jane, Thanks so much for sharing your post on Diabetes Denial. it was really great to understand diabetes from a different angle in such a colloquial manner. I think you have done an amazing job getting to where you are. I am also diabetic, diagnosed when I was 10 but for some reason the risk factors and other people getting their legs amputated due to diabetes at the time of my diagnosis seemed to have a better impact. It is with that view in my mind that I have always managed my diabetes. It is just an amazing thing how different we all can be! Congratulations on having a beautiful daughter, that is such a wonderful triumph!

        Cassie, you don’t need to worry, your daughter will find her own way. Having coeliac disease does not need to stop her from doing things with friends. Its all about her attitude towards it, just make sure she knows that she doesn’t need to hide it from anybody and that people may be curious but they are usually only out to gain knowledge!

        All the best!


    • Christine , Direct link to comment

      From experience of both diseases with my now 18 year old daughter I can honestly say that managing coeliac disease is a walk in the park. There are so many “normal “gluten free options available now. After living a very strict gluten free diet ,for the last almost 9 years, if she is ever tempted to indulge in anything with gluten it makes her feel quite nauseous. So who wants to make themselves feel this way. Far more danger in not knowing if you have Coeliac disease. As for teenage years -yes she had a short period when she was non compliant in managing her T1d but using a pump and having to upload the pump data regularly means there is no where to hide if the support team-parents, clinical staff etc are doing their bit too. We found that the having and keeping of a driving licence was a huge incentive to do the things people with T1d need to do to stay healthy. Also we have to remember that sometimes the feelings teens have are just that, part of normal teen development. I think pumps are a very valuable tool to help teens in particular to have more freedom of choice in their daily lives.

  • Maxabella , Direct link to comment

    Jane, you are a brave writer and this is such a fascinating insight into a complicated condition. And it’s true that it’s just as hard to remember to take care of ourselves whether we are well or we are sick. Life is even more complicated than Type I Diabetes… good luck with it all and be gentle on yourself. x
    Maxabella recently posted…Mufti-madnessMy Profile

  • Caylie Jeffery , Direct link to comment

    Jane, Thank you for sharing this insightful life issue that so many of us have to face, in varying degrees. The longest relationship we ever have is with our own minds and bodies, and it’s bound to be a bumpy road, full of the issues that we have with any other relationship. It’s up to us to keep that relaitonship going though, isn’t it?
    Caylie Jeffery recently posted…Debunking the Disney Myth…My Profile

  • Janet aka Middle Aged Mama , Direct link to comment

    I’ve never thought much about diabetes, I know my Father in Law now has it but that’s about it. I now realise how blessed I am not to have had to deal with such a major disease so early in life. I dread the thought of being diagnosed it myself in later life – how much worse for the kids who get Type 1 – my heart goes out to them.
    Janet aka Middle Aged Mama recently posted…I was Homeless as a TeenagerMy Profile

  • Kirsty @ My Home Truths , Direct link to comment

    I have two young relatives with Type 1 and it’s been so hard on both of them and on their families – they will only face more challenges as they reach their teenage years. Having just recently been allowed to drive again after my suspected TIA I can only imagine how hard it would be to never be able to drive – I must confess the lack of independence was very hard to deal with. Thanks so much for linking up today Jane x
    Kirsty @ My Home Truths recently posted…I Must Confess…Medical ConfessionsMy Profile

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  • lisa , Direct link to comment

    Thanks for sharing your story, I often see women at work (I am a midwife) who struggle with gestational diabetes, even that is difficult to digest, but I am sure it would have been a huge challenge for you over the course of your life.
    lisa recently posted…Recipe: M&M Choc Chip Cookies…My Profile

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