From Uni Procrastination, to a Type 1 Diabetes Diagnosis

Monday, May 3 2010

It was the first week of May 2010. A warm May, from memory. My head was buried in uni assignments and a part time job, with my 18th birthday looming just a few weeks away. 

In an attempt to make some kind of headway with those assignments, I decided to skip uni for a few days. I was never the kind of person who could smash out a 2,000 word paper the night before it was due. There were at least three or four separate papers I had to write, each in need of ten credible journal references. This meant hours and hours of reading through painfully long and boring PDF documents. I needed all the time I could give myself, because I knew I would be working later in the week.

Being left to my own devices in an empty house was a recipe for procrastination. Over the course of three days there were many Facebook sessions, browsing breaks, and heading to the kitchen for a drink. In fact, the latter seemed to be happening more often than I was normally inclined. A glass of soft drink was over no sooner than I had poured the glass. Even plain water, which I found unpalatable, was tempting. 

Try as I might, I just couldn’t seem to find the energy to focus on those papers I had to write. I felt rather tired and lousy. Rightfully so, given I had just wasted away three whole days doing next to nothing.

Thursday, May 6 2010

I really didn’t want to get out of bed. My mouth was ever so dry, and I felt really lethargic. Feeling the shame of a very unproductive three days, I forced myself up out of bed. Thinking I had to snap out of my rut, I prepared a super healthy lunch to take to work. A salad sandwich, Ski yoghurt and carrot sticks.

The energy to remain standing on my own two feet at work that day was lacking. I might have lasted half an hour, at best, before I gave in and went home.

I wasn’t even sure I’d be able to drive myself home. Although tempted to call Mum and Dad, I knew they were out and didn’t want to interrupt their errand. It took every last ounce of my energy to drive myself back home. No sooner than I had walked through the door, I collapsed onto the couch and buried myself under the comfort of a blanket.

When my parents arrived home, I told them that I wanted to go see a doctor. Mum relayed to me that the earliest available appointment to see our family doctor was Saturday, and I knew I simply couldn’t wait until then. 

We visited a medical centre later that morning. After explaining my symptoms of exhaustion and excessive thirst, the doctor sent me home requesting bed rest and hot fluids for three days.

I spent the next three days in bed, which speaks volumes for me. Never in my life had I stayed in bed when I was unwell. Sick days were often spent eating Mum’s chicken noodle soup, reading a book or watching the midday movie surrounded by tissues. 

My mouth was now stripped of all of it’s saliva. I was struggling to find any food even remotely appealing, much to Mum’s distress (eat something!). I questioned my diet and lack of interest in physical activity, truly under the belief that these symptoms were of my own doing.

Sunday, May 9 2010

It was very early on a Sunday morning. Mothers Day, to be exact. I was restless, and had gravitated from my now uncomfortable bed to the living room couch. Ice cold, refreshing drinks were now a craving. These cravings were becoming insatiable, and more frequent. I was struggling to pass the mere minutes in between refreshing glasses of ice cold Orange Juice on the rocks.

In the kitchen, I was frantically trying to get ice cubes out of the tray and into the Snow Cone machine. I was onto my third or fourth orange juice granita when my rumblings in the kitchen got Mum out of bed.

“What are you doing? The doctor told you to have hot drinks!”

My heart rate was becoming more rapid by the minute, and I was going to the toilet at least once every hour. A bout of nausea finally made me feel slightly better, and got me settled that night.

When I woke up a few hours later, I was panting. My heart rate was extremely rapid and I felt breathless. I was still extremely thirsty and exhausted, and going to the toilet every hour. I told Mum and Dad how I felt, just waiting for them to suggest what I was thinking.

No sooner than Dad had started talking about going to a doctor, I shot it down. I knew that it would be pointless, and that I couldn’t hold out for that long. My mind was made up. I had to go to hospital.

The car ride was a blur. I was panting the whole time, eagerly staring out the window the way Scruffy does on the way to the park. I had no idea what was wrong with me, or if I would ever have my salivary glands restored. Honestly, then and there, I wasn’t even sure that I would survive this.

Soon enough, I would learn that my pancreas had stopped producing insulin, the hormone that regulates blood sugar levels, through no fault of my own. I would become dependent on insulin injections and frequent blood glucose monitoring with finger sticks for the rest of my life.

I was diagnosed with a condition called type 1 diabetes, the minute I walked through the emergency room door.

It’s National Diabetes Week here in Australia, and the reality is that many individuals and healthcare professionals aren’t aware of the symptoms of type 1 diabetes. Case in point. Had these symptoms been properly diagnosed when I first visited the doctor, my hospital admission may well have been avoided. I’m sharing this story today, with the hope that it might stop another person from going through the same ordeal as me.

VLOG: It’s About Time!

Happy National Diabetes Week, Australia!

This year’s theme is “It’s About Time,” which coincidentally ties in with how long overdue I am for another vlog.

I think it’s great that we are focussing on earlier detection of diabetes, and the theme certainly resonates with me. However I’m still not wrapped with the heavy focus on all the bad things that could happen.

Take it away, Frank…

You can also check out Diabetes Australia’s video which I mentioned somewhere in my ramblings here.

Of course, I’d love to hear your thoughts on this as well.

Diabetes Advocates Day

On Saturday, I was invited to be a part of Medtronic’s inaugural Diabetes Advocates Day. The event brought together a small group of advocates from around Australia at Medtronic HQ in Melbourne. Some of the advocates in attendance were familiar faces, while I briefly met others for the first time.

The day began with a coffee stain on my nice shirt and Chinos, as I discovered that my cappuccino had two lids placed on it! 

On the subject of book recommendations, I got to muse at the amount of times I get ridiculed at home for picking up a new book and not finishing it! (Yet I call myself a writer…)

Despite all of the creative minds in the room, the best hashtag we could come up with was #dAdvocatesAU, not to be confused with all the Dadvocates out there!

Going into this event, I was half expecting a big announcement. I knew full well that Medtronic’s hybrid closed loop system – an insulin pump that automatically regulates basal insulin based on CGM readings – is being rolled out in the US later this year. Although there was no announcement of the sort, we did get to hear about research currently underway with these systems from endocrinologist David O’Neal.

One of the most fascinating things to hear was the acknowledgement that overnight insulin needs can vary by as much as 200%. I only recently wrote about my own struggles, and having to tweak my overnight basal rates at least once a month.

We were shown research participant graphs of several nights where different foods were consumed, and how effectively the hybrid system was able to regulate blood sugar levels.

There were a few reactions in the room at one of the graphs, where a patient drank a glass of juice without giving any insulin for it. This triggered a very insightful discussion about placing our trust in the technology. There were advocates in the room who expressed that they felt the most comfortable and in control with multiple daily injections. Many of us couldn’t imagine not treating a hypo, and letting the pump suspend insulin delivery to stop glucose levels from falling below target. As technology advances, those of us using it will ultimately have to move past years of training we have received from diabetes healthcare professionals, as well as our own habits and tricks that work for us.

The most engaging part of the session was hearing from Eduardo Chavez, Medtronic’s Market Development Consultant. He expressed that technology is not able to adjust to real life. Our food, our sleep, and the activities we undertake during the day are often spontaneous and vary each day. That’s where the concept of Sugar IQ comes in. Sugar IQ is a real time, personalised and actionable mobile assistant in development from Medtronic. The underlying idea of this app was to make daily management tasks easier, and with less effort from the user.

Logging data is tiresome. If I’m going to log carbohydrates, insulin doses, and blood sugar readings, there has to be a clear benefit for me. While the app analysed CGM data and highlighted trends or patterns to the user, I felt that it didn’t go as far as giving the user actionable suggestions. I know that there are a lot of regulations around mobile applications giving medical advice, but many of us pointed out that it was unrealistic for the user to be able to get in touch with their healthcare professional every time the app suggested so. I also felt that the app would have been more effective if it were compatible with a wider array of pumps, meters and CGM systems. It will be interesting to see how our discussion influences the development of Sugar IQ going forward.

After breaking up for some brief group activities, the day ended with a GoPro group selfie. It was a jam packed day full of stimulating and insightful discussion. I guess my only disappointment was the lack of time to network with the other advocates in attendance. Big thanks to Medtronic Diabetes for inviting me to be a part of this event, and be sure to check out the hashtag #dAdvocatesAU on Twitter to view the discussion from others in attendance.

Disclosure: Medtronic Diabetes Australia covered my travel expenses to attend Diabetes Advocates Day on Saturday. They also put me up in a hotel on Friday evening and provided morning tea and lunch at the event. I stayed in Melbourne for 3 additional nights at my own expense. There was no expectation that I would blog about the event, and all thoughts and opinions expressed here are my own!

An E-Mail To My Electoral Candidate

To my Electoral Candidate,

Just a quick response to the e-mail you sent about your campaign for the upcoming State Election. 

I wanted to tell you about something special happening in my life. Something so special, it happens every single minute, of every single hour, of every single day. In fact, it’s so special, that I get to keep it for the rest of my life. 

Exciting, right?

Six years ago, my pancreas did something unprecedented. Something very grassroots. It decided to call it quits, and handed over the reigns to me. A commoner, would you believe it? All of a sudden, I was in charge of trying to mimic a working pancreas. This meant giving insulin to match the foods I eat. Adjusting insulin delivery based on the carbohydrate, fat, protein or glycemic index of my meal. Matching insulin delivery to any physical activity I undertake throughout the day. Keeping my blood sugar level above 4 mmol/L, in order to keep my brain functioning and remain conscious. Keeping my blood sugar below 8 mmol/L for as much of the time as possible, so that I can maximise my chances of living a long and healthy life. 

Sounds like a tough gig with extremely high stakes, right?

I live with a condition called type 1 diabetes. A condition that is often unpredictable, operating with a mind of its own. To stay on top of this, I can often be found pricking my finger. Sometimes, as often as 20 times per day.

Sounds intrusive, right? 

I’ve received care through a public hospital diabetes clinic for many years, but it’s hardly been adequate. Patient numbers continue to grow, while resources continue to be stretched thin. I reached a point where I felt I was no longer getting the personalised support I deserve to help me manage my chronic condition to the best of my ability. This means forking out my hard earned money to receive the support I deserve.

I sometimes wear a device that continuously monitors my blood sugar. A device that keeps me safe from the lows and the highs. A device that gives me a great deal of convenience, allowing me to more quickly respond to the lows and the highs. I’d like to wear it full time. I’d like to try other Continuous Glucose Monitoring devices that are on the market. Yet this device, and others like it, are not currently subsidised in Australia. It costs me a fortune to wear. This is on top of all of the other life challenges facing young adults in Australia, that I am sure you would be well aware of.

You are campaigning for a man who will be a Premier for every West Australian. In my books, a man who truly is a premier for every West Australian, would not let me live through such injustices.

Warmest regards from the bottom of my broken pancreas,