Simon's Story

Hi, my name is Simon, I am a father of 5 and hold a Masters. I am currently based in Auckland but spent my younger years growing up in Wellington. I was diagnosed at 6 years old I, have now been a type 1 for 40+ years.

My Life changed forever after my GP confirmed a positive test result for Type 1 Diabetes. I was sent straight to Hutt/Wellington hospital where I stayed for a week. In the 1980s the funny thing was, as an adolescent, they felt I was too young to understand the condition in any real capacity. Yet, on the other hand, was handed a syringe, shown how to draw up and administer the dose. For the first 6 months, my parents were told to check the amount I had draw up before I administered any insulin. After that period, it was all left to me at 7 years old. In those days we also had to remove air bubbles in the syringe, then draw back to check for blood. I can still remember like it was yesterday, after one of my check-ups, we went to a hospital pharmacy for insulin, urine strips, and syringes. They told my mother the user pays cost. She queried, and when confirmed, her disdain clear as she complained free syringes were given to drug addicts, but she had to pay to keep her son alive. This still haunts me to this day. The feeling of vulnerability was already burdensome as a young child, but to know someone taking illegal drugs, was a more valuable life to save than mine, though no fault of my own, has never left me.

At the time only testing for glucose levels was with urine. This was done by peeing on a test strip that had two colour changing squares, one for glucose, and the other, ketone. The shocking thing, was this result, was hours old. One of the dark ages of Type 1 diabetes management, though still nothing compared to those who lived before me. Think about trying to manage your insulin and food intake with information hours old. You have no way of knowing what level you truly are. Looking back, scary doesn’t come close to describing it. In fact, it’s a wonder I and others from that period are still alive! And the ones that are, live with the damage both physically and mentally the methods of the time, has left us.

As the 1980s drew to a close, BG started to become a new form of personal testing. The ability to manually prick your fingers with a lancet, placing it on a testing strip and within two minutes you had an accurate result, revolutionized the life a person with diabetes. And yet, one cannot articulate the stress and physical infliction of repeatedly traumatizing your fingers, bore. As the meters became more mainstream, though arguably not readily available with a price tag of more than $500 even back then. It sadly wasn’t an option my parents could afford. I was stuck in the old ways, again through no fault of my own, while those who took little regard for their live, were continually abetted to a lifestyle that came jail time.

As we entered the 90s along came the Boehringer Mannheim: Advantage BG Meter. Later called the Accu-Check: Advantage. Given to me by the hospital with my first lancet I had my first relief, for it significantly reduced the pain. much easier to use. This at the time felt life changing and with the improvement, I felt a freedom from the burden of what could easily kill me. During that decade vast improvements were made with new insulins and upgraded meters that read faster and were more accurately.

In the 2000s game changing insulin such as Lantus and Humalog because available in NZ via trails and later available to everyone. From that point however Type 1 Diabetics became largely forgotten. There are many new insulins available overseas some for many years (10+) that we still do not have access to, even now as I write this. In the early 2000s I became very sick with a nasty flu. Now, juggling this illness while trying to mange my Type 1 diabetes, I struggled. Sadly, for the first time in all my years of being diabetic, I was rushed to hospital in Diabetic ketoacidosis (DKA), a very serious life-threatening complication of diabetes. DKA develops in a diabetic who doesn’t have enough insulin to allow glucose into cells for energy. Instead, the liver breaks down fat for fuel, a process that produces ketonic acids. When ketones are produced rapidly in a diabetic who also has high blood sugars, this puts their life at risk in an alarmingly fast way.

This was a life changing moment for me. Not only had I never been informed of DKA, I knew nothing of its risks. After I was stabilized, I was still kept in the dark. I heard the doctor tell my partner, had I come in a few hours later, they would have lost me. Being that close to death changed me at the most fundamental level, and still I was kept in the dark, only basic information shared, like I was that young child, unable to ‘understand.’

Over the week I spent in hospital, it dawned on me, as I’d been diagnosed as such a young age, no one had bothered to update my knowledge as I continued to meet with specialists. Not one specialist, my GP, or any medical professional I crossed paths with, including the week I lay bound in a hospital bed with nothing but time up my sleeve, did anyone come to discuss anything with me. Vulnerability again plagued me. No one was in it for the person, I was nothing more than a patient, a number to be crunched, my compliance the only thing that mattered. No outside agencies, to come and check on me and my knowledge, no charitable trust to ensure my education on diabetes was up to date. Isn’t that why we have these organizations I thought to myself. Upon leaving, you can image how disgruntled I now felt. If I wanted to get a handle on all things diabetic, it was now incumbent on me. I actively made appointments with my GP, DHB diabetic apartments, joined local groups, all in a bid to fill in the gaps that’d left me at risk of having another DKA, or worse an early grave.

I had a family who were having to care for me, when I should have been the one caring and worrying about them. That was going to change. I had spent so many years of my life surviving and not living on the ancient believe systems I’d been told in the 1980s. From there, I made many changes based on my ap-appointments and research. I was feeling better than I ever had in my life, but I still had a long, hard road ahead. It’s hard to convey to someone in a way they can relate to, that is not a diabetic, the physical, mental, and emotional turmoil living with such a condition has, let alone the sensations, which plague your entire being with every high or low you experience. Imagine waking almost daily feeling ill, icky grumpy, tried and that no matter how hard you try, it largely remains the same. Add societical pressures of life, work, putting on a happy face for those around you. All this culminates in the person that is diabetic, and when critical information, or spaces that allow them to work out what suits how their body individually responds to this metabolic disease, it’s no wonder as diabetes continues to skyrocket, so does mental and physical ill-health.

The diabetes nurse I was assigned at my local DHB was able to get me on a new 1-day course called carb counting. I learnt valuable information, caught a glimpse of a current generation’s insulin pumps in action. I can say the one-day course really needed to be a 2, to really come to grips and understand this concept. I continued to educate and research pumps, and other options to improve my diabetes management. This is my condition, my health, I needed to take a driver’s seat in my care. I may not be a doctor, or other professional, but I know my body better than anyone. HDC, and at least one other health care setting actively advocate for a partnership between consumers of health and their carers.

Its important to remember, while we all should have support it is our responsibility to manage and taken control of this life changing condition. If you are not being given the support, make your voice heard. Please don’t suffer and die a slow painful death in silence, it doesn’t have to be like that I promise you. That said I stop here to take a moment, to set straight a common misconception. Type 1 Diabetes is not caused by anything we did or didn’t do. Right back to the story: As the 2010s ended and the 2020s started, I was lucky to get a free trail of the Libre, Flash Glucose Monitor (FGM). It was amazing, no finger pricking required, you just scanned the sensor with what looked like a BG meter. It gave you a graph of you BG level and a trend point to help warn of highs or lows coming. The sensor updated with a reading every 15 mins. For the first time I did not have to manage my condition with 4-8 data sets over a 24-hour period. Reading in 24hr I now had 4 every hour. Life changing. Then came the (CGMs) Continuous Glucose Monitor which read the BG every 5 mins, then sent the information to a reader, smartphone, or insulin pump. It meant you could have alarms to warn of highs or lows. You could find trends, see how stress, food, or even physical exercise affect-ed your levels. Sadly, all of this technology was not, and even after 7 + years in the market, not funded here in New Zealand. Whereas both the UK and Australia have. Given NZ often follows our commonwealth partners, I find it perplexing.

In 2021 I had an appointment to get a funded pump. No matter what I did insulin and even diet related with the support of the diabetes team at the hospital we could not stop my daily nightmare from the hours 12am – 4am I had a high chance of going low. From 4am – 8am I had high chance of going high some nights I had both. Some how I have been able to operate in this insanity for longer than I can remember.

My funding was approved. Now I had to select between 2 different types and complete the required DAFENE 5-day course. Due to limited funds and resources, they always had more people than places available. This made getting on the course difficult but what I can say, is if you can get on it, even if you are not going to use one this course answers all your questions, offering knowledge to better mange your condition. Having made the decision to go with the Medtronic 780G insulin pump, sure its not as pretty as the touch screen alternative, its size is similar. “Form equals function” is the term that comes to mind when you talk about the 780G. Its core is cantered around a state-of-the-art algorithm, unlike anything else on the market. Once you combine it with the Medtronic Guardian 4 CGM, you enter a mode called smartguard, regarded as the closest thing to a pancreas. It’s REAL-TIME diabetes management. Offering a full hybrid closed loop system. All you do is enter in the meal carbs and the system does the rest.

It automatically controls and adjusts your basal insulin in real time keeping BG within a manufacturer preset of 3.8-10mmol. You can however, set your own personal high and low triggers, that will set off an alarm when you are nearing and outside set scales. To tighten your control even more, you have multiple (BG) target options ranging from 5.5, 6.1 to 6.7. There is even a temp target of 8.3 to cover sport, gym or other active endeavours. It can temporarily pause the basal to help reduce or stop a low,

In the case of a high it can increase the basal rate, and auto correct to reduce, or stop a high. You also have a manual mode with patterns/profiles, if for some reason you needed it. What’s really humbling is it encourages those around you to learn and be active in your condition. My kids have learnt the warning alarm sounds on both highs and lows. So, if for some reason I didn’t hear, or didn’t feel it vibrate. They even engage when it brings my attention to set changes, it makes my diabetes less worrying for them.

I was one of the lucky few to get onto this system the moment it was available in NZ. My HbA1c has been 39mmols for over 12 months in the non-diabetic range. It has changed my life. I sleep better, wake every morning with a BG of 5 – 7mmols, I feel alive. No more feeling ill, icky grumpy like I have for longer than I can remember. Sadly, to have this solution I have to self-fund the expensive CGM. Given the rampant increase of diabetes, I’m saddened it is not funded yet, with it up to the individual to pay. We fund more, to lesser conditions, though that is not to discredit their suffering, as said, with diabetes becoming endemic we need to start seriously looking at being the fence at the top of the hill not the ambulance at the bottom. Our healthcare system is already failing, how will it ever cope with our current diabetic population as it ages and needs access to more intensive treatment? When it can be minimized with better monitoring of our health in real time.

Sure, I can manage my condition without this technology. But what awaits me down that road is slow, painful suffering both for me, and my family. So, I live daily in fear that at some point with the current climate at some point I may not be able to afford the luxury of self funding. Life saving treatment, that radically enhances the life of an ever-growing subset of the population, should be paramount in any agency seeking to promote the health and well being of diabetics, in a way that truly serves them, and not the red tape. It doesn’t seem that absorb to want these things with how our society has been governed. No longer are we in a self-serving space, socialism is where we currently stand.

For context, a single DKA costs thousands of dollars a night. Let’s not forget kidney, heart, feet and eye issues, quickly mount to the fast-growing bill sent to our government, often in the hundreds of millions. This as I’ve said can be mitigated with better care BEFORE a diabetics poor control has cost what could’ve been spent on CGMs and other conditions. With the lack of transparency, its not hard to consider the Government and Pharmac might well be not only be financially, but morally negligent, on this matter. Type 1 diabetes is an autoimmune disease, it puts us most at risk of complications from both the condition itself and the consequences of secondary failures with our hearts, kidneys, eyes etc. We are real people with real families just wanting to have a normal life like everyone else.

I have many stories and experience I could share, but today I wanted to give everyone a very small snapshot of 40+ years of Type 1 diabetes life here in New Zealand and the possible amazing future being withheld from us. I just want a longer, happier life for all ages of diabetics and their families here in NZ. That would be my reward.

Thank you for your time I hope this has either made your own voice feel heard or created awareness and under-stand.