I was asked to share 'my diabetes story' at the New Zealand Ministry of Health's Diabetes workshop last week. The workshop was for District Health Boards, Primary Health Organisations and clinicians to come together to discuss diabetes services and share in innovations and updates to the sector. I jumped at the opportunity to help planners, funders, CEOs and clinical leads understand the challenges type 1's face on a daily basis and what could be done differently to support people living with diabetes.
As I stepped up to the microphone the nerves set in. A small part of me was nervous about speaking in front of a large group, however my biggest worry was that I wouldn't do it justice, letting down the type 1 diabetic community.
I made a few notes to make sure I shared the real-story, our story.
Here's what I said:
I’m Ruby McGill and I’m a type 1 diabetic. I’m also the Director of Youth for Diabetes NZ, a mother to beautiful 6 year old Olive and 6 month old Felix, who is forever smiling. I am married to Hayden and together we run a local plumbing business that employs two people. I am a sister, a daughter, an Aunty and friend to many. I am a blogger, a columnist and a life-long learner. Even though type 1 diabetes infiltrates every aspect of my life, I refuse to let it slow me down or restrict me from living a full life. However there have been many moments where I thought diabetes would win.
I was diagnosed with type 1 diabetes when I was 14 years old, half way through my fifth form year (year 11) at college. Fast forward 18 years and here I am! It certainly hasn’t been easy and just when we think we have a grasp of living with type 1 diabetes it pulls the mat from under us and we come crashing down! I say ‘we’ because anyone in this room who has loved a type 1 diabetic knows that this disease affects not just the person diagnosed, but everyone around them.
The first few years after my diagnosis are a blur. I don’t think I truly understood the enormity of this disease and the complications I could face if I didn’t take care of myself. Luckily I managed to make it through my teenage years relatively unscathed, with only a few diabetes mishaps. From the outside I was like any other teenager, I performed in the annual college productions, went to the ball, sailed around Great Barrier island on the Spirit of NZ, hung out at school parties and passed most of my exams. However during this time I was admitted to hospital a number of times due to extreme hypos or ketones. One visit I was even admitted to the Intensive Care Unit (ICU). I can only imagine what this time was like for my parents. I certainly wasn’t a rebellious kid, but like all teenagers I’d try things and push the boundaries to work out who I was!
A few years later I met a boy. He didn’t truly know what he was signing up for when he asked me out, but 12 years later he’s still here! In our early 20s we moved to the UK so Hayden could play rugby. He found a job making sheet metal and I worked for Virgin in their faults department (absolutely soul destroying). Every week money was deducted from our very small salary and went to the National Health Scheme (the NHS). I felt like I’d hit the jackpot. It covered all my visits to the doctor and every prescription. I certainly got my money’s worth while I was over there!
We developed the travel bug while living overseas and spent two years exploring the UK and Europe. Thank goodness I was travelling with someone as I recall the many paralyzing hypos. Hayden had to simply take over, packing up our tent and bags before the bus departed Paris, or navigate the back streets of Dubrovnik to get us back to our campsite. All while I sat there like a zombie or a blubbering mess, eating whatever I could get my hands on to bring my blood sugars and my brain back to normal. It was hard.
Once our visas expired we returned home and settled back into Upper Hutt. We got married, bought our first house and thought about starting a family. A type 1 diabetic pregnancy takes diabetes management to the next level! Every out of range blood sugar has the potential to cause major damage to an unborn baby. I worked bloody hard to keep my blood sugars in range through both of my pregnancies, yet I still felt like a failure leaving many of my hospital appointments. I’d put on a brave face and then burst into tears as soon as I walked through the doors. I was doing everything they told me to do, but sometimes my blood sugars had a mind of their own. Until recently I thought out of range blood sugars made me a BAD diabetic. Only after joining the online type 1 community did I discover I am not a BAD diabetic (most of us aren’t) I am simply a diabetic!
During my second pregnancy I was introduced to the New Zealand Type 1 diabetic mum’s Facebook group. Being able to share the literal highs and lows was priceless. We learn from each other and get comfort knowing we're all going through the same thing! We celebrate the arrival of healthy babies and support each other when diabetes wins claiming our babies. Without this group, a type 1 diabetic pregnancy can be long and lonely.
There are no days off with type 1 diabetes. It is relentless. 24 hours a day, 7 days a week I have to test, inject, count carbs and correct. If I get it wrong the consequences could be fatal! Rightly or wrongly when I’m asked how my diabetes is going, I normally say “fine”. But if I’m truly honest it’s hard, bloody hard, exhausting and I wouldn’t wish this on my worst enemy and every day I’m grateful my children don’t have this horrible disease.
I recently learnt that type 1 diabetics are 50% more likely to suffer from depression. This comes as no surprise when every blood sugar result can feel like a reminder that you’re either on-track or failing. In my opinion to truly master diabetes you must be resilient and mentally tough. With that in mind it’s bizarre that this is not discussed during diagnosis or regular hospital appointments. How come newly diagnosed diabetics aren’t armed with strategies to build strong mental health? Like so many things it appears there is an ambulance at the bottom of the cliff mentality rather than being proactive and providing tools and resources upfront.
In August 2015 I was burnt out. I was unable to function at work after constant hypos in the middle of the night. Diabetes was winning. I began exploring an insulin pump, I had to do something! I jumped through all the hoops and submitted an application for funding. It was declined. Why? Because I was not a bad enough diabetic. There it is again – the ambulance at the bottom of the cliff. It seemed I had to have a few more hospital admissions under my belt to be considered. My diabetes was jeopardizing my ability to hold down a job, this seemed pretty bad to me! Luckily we didn’t take no for an answer and resubmitted the application supported by letters explaining the effects this disease was having on my family and I. A few weeks later my funding was approved. Using an insulin pump has been absolutely life changing and I’m grateful for this opportunity, but it shouldn’t be this hard!!
Around the world type 1 diabetics are using continuous glucose monitors (CGMs) and the freestyle libre glucose meter to help manage their diabetes. Unfortunately for kiwis the two CGMs available in NZ are not funded which means for the majority of us we will never experience the benefit of this life saving technology. I’m one of them. And the Freestyle libre… well that isn’t even available in the country!
With so many New Zealanders living with diabetes or pre-diabetes it still blows me away that ‘experts’ don’t understand the difference between type 1 and type 2. It all seems to be lumped in together. I’d assumed when visiting a secondary care midwife or my local GP I wouldn’t be greeted with “I was expecting someone a lot bigger” knowing I was diabetic or to be asked whether I’d tested my blood sugars today? Of course I’d tested today I have type 1 diabetes! Perhaps my expectations are too high?
Living with diabetes is tough. It certainly takes a team of friends, family and experts to master diabetes. In my opinion the more support available the better and the sooner we all have access to life changing, life-saving diabetes technology the sooner we can thrive with diabetes, reducing the pressure on our health and well-being, the health system and our families.