Myf’s Story

My story is a 50-year one of Type 1 Diabetes. I've recently discovered 3 others in my geographical area (Waikato) who have been dealing with their own 50+ years of Type 1. One of these nearer to 60 years!

My 50 years have seen, especially initially, some pretty tortuous times, with many admissions to the Hospital's Emergency Department because of low blood sugars having crept up during the night. At least one of these caused a seizure. I was just so lucky that my late husband, Ken, always managed to spot these episodes, so that I emerged unscathed apart from the inevitable damage to brain cells because of these constant hypoglycaemic events. Today, this means that, while my thought processes are on the whole "normal" enough, I have some memory difficulties. I do lead an independent life, but am wholly reliable on rigid routines and my ever-present diary. Of course, these difficulties might be to do with ageing, although I think otherwise...I tried my best, but never managed to attain any real degree of consistency in my daily blood sugar levels.

A major problem occurred after approximately 10 years of being on insulin, when I began to lose awareness of oncoming hyoglycaemia. Again, Ken was the one who recognised the signs, while I perceived no symptoms. He would appear with a glass of glucose for me to drink and while initially I declined the drink, I would graciously accept just in order to humour him. This actually happened from time to time earlier in my diabetes life.

Strangely enough, I recall having felt "better" after drinking said glucose! I'd had no idea that I had not been functioning normally. I very promptly learnt that his arrival, glass in hand, meant that I needed to swallow the contents, no protest!

This erratic way of life continued for many years, to the despair of Ken and me, as well as my ever-caring diabetes Consultant. Following Ken's death in 2009, I managed reasonably well, through making arrangements to phone St. John's ambulance each morning and/or a system of open/closed curtains to signal my lovely neighbours and later in the day, by the good fortune of the occasional phone call during which callers realised that I was not responding normally and phoned for an ambulance, even from the South Island. Indeed, I've been so lucky.

However, there did come a time, perhaps around 2015 - 16 or so, when my own life and/or that of other road-users was at risk through my having two hypos whilst driving. The first of these was an immense shock to me, but when the second occurred, I was about to surrender my Driver's Licence when again by immense good fortune, the Dexcom Continuous Glucose Monitor (CGM) became available in NZ. As I live rurally, life without a licence would have been more than a little difficult, as there is no public transport available and my car is essential for my ongoing attendance at things like choir, voluntary work at that stage and gym, let alone meeting up with friends, going to movies etc etc.

The CGM was amazing, as it would vibrate and beep at me whenever my blood sugar was going down, or up for that matter. No further driving problems from the day my CGM was installed. Also my blood sugar control did improve to some extent and it enabled me to feel generally more confident and in control of my recalcitrant blood sugars! No further night-time worries either.

A few years after the CGM availability, I was also placed on an insulin pump. While these had been available for an appreciable time in NZ, I had never taken up this piece of technology. Being on the Medtronic 722 insulin pump was a further advancement in my Diabetes Story. The number of daily finger pricks was dramatically reduced, but my finger tips are still fairly numb from all those blood tests prior to the pump.

Then, again by immense good fortune, in September, 2022, I was introduced to a further gem of developing technology, the Medtronic 77G insulin pump, which enables me to "loop" - I cannot only see in one fell swoop where my blood sugar level sits at any time, but also I am warned of lowering or rising levels. It also automatically releases insulin should more be required and pauses the ongoing drip-feed of insulin should a hypo be imminent. It vibrates/beeps persistently when sugars sink. While this does mean that the good old Dexcom CGM no longer features in my life, the Medtronic is the weapon of choice as it manages all aspects of my Type 1. The "looping" capacity has proven itself in that for a number of years now my optometrists have detected haemorrhaging in my eyes due to diabetes; however, examination of my eyes after some months of looping detected no signs of haemorrhages.

All of the above developments mean that I am unlikely to bother the health professions in the near future, if at all in my life, apart from possibly a Rest Home should my many earlier severe hypos result in future dementia.

These developments in the lives of more well-off Type 1 Diabetics is quite phenomenal. That I am able to afford these in my life is an incredible piece of good fortune; also a stroke of good fortune for NZ's health regime insofar as I am unlikely to clog up hospital beds and/or staff expertise and time.

However, for those Type 1s who simply cannot afford such a luxury is to my mind not only cruel, but also grossly discriminating and unjust.

Accordingly, I most stringently request that Pharmac NZ is provided with the wherewithal to supply all Type 1s in the country with at least the less expensive Libre CGM. While this operates independently of the insulin pump, at does at least by now warn of incipient hypos, so provides the safety valve that will guard against hospital admissions in the short term and against the development of the "complications" in eyes, heart, kidney, and peripheral blood supply etc. that potentially affect all diabetics.

I would have given a lot to have had all these technological advancements when I was first diagnosed, 50 years ago.

To know of their current existence and availability causes me to cringe and feel guilty that I am able to access and use them while many, many fellow New Zealanders cannot. While I realise that there are so many other deadly disorders rife in the population, all crying out for funding, Type 1 Diabetes is one that could become far less deadly and far less expensive to the Government if the CGM were to be made available from first diagnosis. The "Complications" to eyes, heart, kidneys, blood supply etc. could be significantly reduced amongst Type 1 diabetics.

Accordingly, the annual amount spent on this particular disorder would be proportionally reduced and the physical and mental health of Type 1s (also many Type 2s) would be greatly enhanced. A win-win for both purse-string holders and diabetics.