Holly: words many of us living with diabetes have been yearning to hear for many years: “You Matter.”

It was 2015, I was a normal relatively healthy 21 year old who had just completed a diploma in Contemporary Music Performance MAINZ (Music and Audio Institute of New Zealand) before I started to get chronically exhausted. I was in my second year, heading towards a Degree in Music when I noticed I had to do more trips to the bathroom, was way more tired than usual, and my thirst was getting intense. I had no choice but to drop out of my studies after my body was stopping me from being able to focus (and to even get out of bed at all most days). It was soul crushing to not be energized or motivated like I used to be, I didn’t even have the energy to sing!

I knew I HAD to be tested for diabetes when the bathroom trips started, but unfortunately the doctor I saw dismissed me as ‘self diagnosing’ and ‘just going through lifestyle changes’ without so much as a blood test or urine sample! Looking back I’m not sure why he didn’t do a simple blood test, but It wasn’t until I lost 20kg in the span of 2 months that I went back to a different doctor and DEMANDED I be tested. This appointment was different, this doctor was amazing and attentive. She believed my symptoms to align with diabetes, and got me to do a urine sample, but just before she could get it tested there was a power cut at the doctors! Just my luck!

We were in that room for 30 minutes with a torch as a light looking for a Blood Glucose Monitor before the lights came back on! After all the frantic and rather amusing drama of the situation, we finally managed to find a glucose meter to test then-and-there while the urine sample processed. 21.5mmol came up on this little screen, and before I knew it I was being told I had Type 1 diabetes, I had to go see the nurse to get an injection of insulin, and I had to catch a ferry to the mainland in the morning (I lived on Waiheke Island) to go to the Greenlane Medical Centre.

At first, living with this diagnosis was manageable and I must admit rather exciting. To finally confirm what was wrong with me was such a massive relief, and to be instantly surrounded by an amazing medical team with all the guidance and information I needed to cope was more than I could have ever hoped for (the young adult diabetes clinic at Greenlane is amazing). Going home armed with my own glucose monitor, two insulin pens and the knowledge of how I needed to balance my blood glucose was empowering and motivating. To have the ability to improve my own condition fueled my ambition to recover, and before I knew it I felt alive again. I thought I was so blessed to have been diagnosed as an adult, because I could not imagine how hard it would be for parents of young diabetics to cope. Unfortunately I later came to wish that I was, due to the lack of knowledge and understanding of my condition causing confusion at home. Instead of the professionals, on top of trying to figure it out myself I had to teach my family bit by bit what they would have to do in an emergency, what I should and shouldn’t eat, and what I could and couldn’t do in certain situations. It became quite a learning curve, and at times (despite their best efforts) I felt rather alone in my dilemma.

Over time, as my body started to get more unpredictable in carbohydrate to insulin ratio, I started to realize it became harder and harder to finger prick and test my blood. The feeling of failing when my blood glucose was higher than it should be (even when I was doing everything right) was incredibly deterring. It was also so frustrating to encounter what I now call ‘cold-plate syndrome’, where I would have to test my blood, calculate if I needed an adjustment dose, look at the plate of food in front of me and guess how many carbohydrates were in there, convert the carbohydrates to my personal insulin ratio, adding in any adjustment dose and injecting, before I could even touch my food. Doing all of this while telling the others to not mind me, and to start eating out of courtesy (after all, why should they have cold food too?). It got to the point that out of exhaustion and frustration I would not bother doing it at all, and would rather suffer the consequences of higher blood sugar (which I was seemingly getting anyway) and adjusting later when I wasn’t in a social environment or with food in front of me. It was and is no way to live, it greatly damaged my quality of life and is by far the worst part of having diabetes.

I knew something had to change when it came to testing my blood, it wasn’t the pain of the finger pricks that made me reluctant, but rather the wait involved having to get out my monitor to test, do so many calculations based on my results, injecting to adjust to a healthy level, and the results being high regardless. Over the years, after telling myself to just ‘suck it up’ and ‘get it over with’ stopped working, I turned to research what technology was available to help my BGL problem. When I heard about continuous blood glucose monitors existing, I was elated that such technology already existed for quite a while, but then what came next filled me with anguish and hopelessness. My heart sank looking back at all the years I have been struggling to survive, residing in the fact that my life would never be at the same quality of my peers with this disease. To then find out that this entire time there was something out there that could have eased this pain, I broke down in tears to learn that it wasn’t deemed ‘necessary’, and was therefore not funded in New Zealand. My hope in a life of relative normality was crushed in a moment at the knowledge that I could not, nor could I probably ever myself afford it. I felt like a second class citizen, like I wasn’t of enough value to our government to bother keeping alive. It hurt to know that the only reason my life was held back was due to not earning enough money, and that (with diabetes ‘burnout’) I was in no position to work and earn enough to ever break that cycle. Then my heart went out to all of those parents, who were in the same financial position as me or worse, but had to watch there beloved children suffer as a result of not being able to afford it. To watch your child suffer I feel would be far worse than suffering yourself.

Today I have finally applied to the Dexcom G6 CGM 360 programme. My health (despite my best efforts to improve, or at least maintain it) has been damaged by the manual adjustments over the years, and now that I have Polycystic Ovarian Syndrome (diagnosed last year) and have just come out of hospital with a new diagnosis of Fibromyalgia, I have come to realize that without a closed loop system of an insulin pump and continuous CGM, I will only get worse until my body cannot continue. I have to sacrifice being able to save any income and even some food throughout the week, but I need to in order to stay alive with any kind of quality of life, and I know without a shadow of a doubt that this is my last option. I can only plead and hope that someone with the power to change this will hear my voice, and will one day soon make the decision that will change not only my life, but the lives of so many children and young adults in our country. The decision to fund CGM’s will be nothing less than the words many of us living with diabetes have been yearning to hear for many years: “You Matter.”

I wish there was a happier ending, but that is hopefully to come! I am currently engaged, and (with the help of many friends and family) am getting married in May with a small ceremony. Perhaps someday soon with the CGM I could finally have the mental workload lightened, making it possible to focus my efforts and energy on my career and saving up for a family of my own. I now stream music full time on Twitch, singing to a virtual room of an amazing supportive community, and am excited for what the future with a CGM and pump brings.