Diabetes

Diabetes Pressures Without CGM Subsidies

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I was rather touched by an awesome type 1 Mum who spoke out about Continuous Glucose Monitors here in Australia on last night’s episode of Q and A.

Aussie Type 1 Mum Catherine asked Ken Wyatt, our Minister for Health, when Continuous Glucose Monitors would be subsidised by the Australian Government and hence bringing us into line with other countries.

She noted that the cost of a Continuous Glucose Monitor here in Australia was $5,000 per year, which was considerably less than the costs of looking after people with diabetes who are hospitalised. During a one week trial last year, a Continuous Glucose Monitor saved Catherine’s daughter in three instances where her blood glucose levels were dangerously low and could have resulted in hospitalisation.

Catherine told us that she checked her daughter’s blood glucose levels every two hours. She was often sleep deprived from managing her daughter’s type 1 diabetes throughout the night. Diabetes kept her awake for eight hours last week, in an instance where she was unable to get her daughter’s blood glucose to rise above 4mmol/L.

As a single parent, Catherine feels the financial pressures of type 1 diabetes. She cannot afford to work part time, or to stay at home with her daughter. A Continuous Glucose Monitor would allow Catherine to keep an eye on her daughter’s blood sugar levels remotely, and reduce a lot of the stress in her life.

As for the reponse given by the politician on the program, it was the typical response given by a politician. Wishy washy xtatements implying concern and high regard for the issue, but nothing committal.

I can relate to wanting to keep a close eye on blood glucose levels. I will test up to 10 times on most days, just to make sure I’m not having too many nasty hypos or being too high. There are nights where I so badly want to test in the middle of the night to make sure I don’t end up too high. And I often hate myself the next morning for succumbing to my exhaustion and not doing so when I see a high blood glucose level. And I don’t earn a lot of money, either. At the moment, a Continuous Glucose Monitor is a luxury that I simply cannot afford. When I’m paying the bill at the Chemist, I often think of all the other things that I would rather have spent that money on.

Catherine, you’re not alone. Thankyou for sharing your story, and for bringing this issue in front of our leaders, and the Australian public. Well done, type 1 Mum.

The First Time That I Remember Diabetes Being There

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I was standing in the bathroom, staring back at the reflection of my upper body in the mirror in disbelief. It had been a busy start to the year. I was still adjusting to my newfound freedom as uni student with a brand new driver’s license and my first “real” job. So, I guess it had been a while since I had taken the time to have a good, hard look at myself.

Had I always looked like this? I could see bones, and the outline of my ribcage on my chest. And was it just me, or was I looking awfully thin? Or was I simply driving myself crazy? There was no way. Not a chance in hell. I’d been stuck around the 63kg mark for years. I always felt as though I was a little overweight growing up. I could remember jumping on the trampoline and doing sittups, dreaming that I might lose some of the flab I could see every time I sat down. I was convinced I had completely lost my mind, but there was only one way that I could be sure.

I raced into the laundry, grabbed the bathroom scales, double checked that the red dial was set to zero and then jumped on them. For someone who had been stuck around the 63kg mark for much of high school, I now weighed just 47kg. And I was absolutely lost for words.

I knew that I had been feeling rather tired and deviod of energy lately, and happily dismissed the thought of anything being seriously wrong. I knew that I would have to do something about the reflection of that pale, skinny person staring back at me in the mirror. Tomorrow, I would have to start eating healthier. Tomorrow, I would have to try to eat more. And tomorrow, I would have to try to get myself into some sort of “healthy” routine.

Little did I know that I didn’t do anything to cause this. That my body was no longer producing insulin. That my body was unable to burn carbohydrates for fuel. And that my body was burning my stores of fat for energy as a consequence.

In that moment, I was in denial. In that moment, I had absolutely no idea that there was anything seriously wrong with me. And little did I know that in a matter of weeks, I would be diagnsed with type 1 diabetes.

Night Time Blood Glucose Monitoring Mishaps

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It was 10pm on Tuesday night, and I was getting ready to go to bed. We had Pasta for dinner, a family favourite in our house. Pasta usually produces really good blood sugar levels by bedtime. However, being a low glycemic index food, Pasta also tends to have somewhat of a delayed effect on my glucose levels. Once I fall asleep and the majority of my rapid acting insulin wears off, my blood sugar levels tend to creep up. And I’ll wake up the next morning with something crazy like 15.

I was a perfect 7.3 at bedtime that night, but I wasn’t confident that my blood sugar levels would settle there. So I decided to set the alarm on my phone for 12.50am, so that I could test and correct later on. I turned out the light, and went to sleep.

The next thing I knew, I began to stir as my Dad came and opened the door to my room. I could see light streaming in from behind the closed vertical blinds, and the clock on the side of my bed read 6.38am. I was convinced it was Saturday. I was still lying in bed at 6.38 in the morning because it was Saturday. Until Dad asked me if I was going to work that morning. And I realised that it was, in fact, Wednesday.

What the hell had happened? My mind was foggy, and for the life of me I couldn’t even remember hearing the alarm go off. Which was unusual. I hate my alarm. It’s one of those awful buzzer-like sounds that startles me awake in the morning. It’s so startling on a sleepy brain that I usually scramble to silence it each morning. But I also love it for the fact that it has never failed me. Until now.

I didn’t even hear that alarm go off at 12.50am. Well, at least I couldn’t remember hearing that alarm go off at 12.50am. As I tried to put the pieces together, the only reasonable explanation that I could come up with was that I had hit snooze at 12.50am. And in doing so, I hadn’t been able to re-set the alarm for the morning.

I angrily got up out of bed to test my blood sugar. I knew it would be high, but I was hoping for a miracle. The last thing I wanted to deal with that morning was a high blood sugar and the shitty mood that would inevitably go with it. But, as expected, diabetes gave me a lovely 15.6.

I furiously threw the covers on top of the bed and got dressed. I began swearing, and throwing every curse word I could think of at diabetes. I jabbed in 8 units of insulin. A couple of units to cover my usual morning requirements, and a couple to combat that stubborn 15 that I’d been sitting at for the past 8 hours.

I was so furious with myself that I decided I would go straight to work. I didn’t deserve breakfast with such a high blood sugar level. I didn’t deserve that coffee that I so enjoy relishing in the morning either. And the last thing I wanted was to go into work later and let diabetes take my afternoon away from me.

I clocked on at work at 6.58am, just in the nick of time.

And I added a second alarm to my iPhone, to ensure that this would never happen again.

How Can We Change Attitudes to Glucose Monitoring With Limited Subsidies?

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I recently completed the yourSAY (Self-management And You) study, where I was invited to give my insights into diabetes self management and glucose monitoring behaviour here in Australia. As I was answering the questions, it became evident to me that the survey was trying to hone in on people’s attitudes and behaviour towards blood glucose monitoring.

One of the survey questions asked me to identify when I would check my blood glucose levels. Would I check when I wake up? Before meals? 2 hours after meals? Before bed? When I feel unwell? When I feel my blood glucose might be high or low? Before I drive a motor vehicle? Before I exercise? During the night? Or “just to check?” Naturally, I ticked all of the boxes.

If you’re a long time reader of this blog, you’ll know how strongly I feel about blood glucose monitoring. How it helps me to feel grounded and in control over my diabetes. How it gives me a sense of certainty, and peace of mind over this rollercoaster of a disease. And how lost I would feel about it. I have never, ever needed any motivation to check my blood glucose levels in the years that I have been living with diabetes. But as I was completing this survey, it became apparent to me that many people might not be as motivated to do so (no judgement either way).

I might be wrong, but it seemed to me that this survey might have an end view of encouraging people with diabetes to check their blood glucose levels more often. And when I think of this issue, one thing comes to mind. 

How am I supposed to check my blood sugar levels that often when our test strip subsidies here in Australia are so limited? How am I supposed to check my blood sugar levels when I get behind the wheel, when I exercise, when I feel unwell, before a meal, after a meal, when I feel low, when I feel high, when I’m unsure and during the night – when our National Diabetes Services Scheme only subsidises 5 blood glucose tests a day? How am I supposed to check my blood sugar levels when I am being told that I consume too many diabetes supplies? (You can read more about this in the column I wrote for Insulin Nation in July).

If this is indeed the end game that our diabetes regulatory bodies are seeking, then surely the sensible approach would be to re-evaluate our healthcare policies.

I must say that completing the yourSAY survey was rather stimulating. It certainly made me reflect on my diabetes management strategies here in Australia, and I’ll be sharing some more of my thoughts here in the days to come.

If you are a person with diabetes living in Australia, you can complete the yourSAY survey by visiting yoursay.org.au.

Dealing With Diabetes Blogging Burnout

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Two weeks ago, I wrote my 100th post here on Type 1 Writes. It still felt so unreal to me. That I had accomplished something I had put off for so long, and kept at it. Something that had seemed so overwhelming and so complex was actually just as simple as writing from the heart. Something that I had only ever imagined in my wildest dreams was now a reality. I felt so proud and accomplished, but at the same time I couldn’t help but feel that it was the right time to succumb to my growing exhaustion.

I guess in the past month, I’ve been pushing myself a little too hard. In these past few weeks, my brain has been exploding with ideas to write about. From things that happened during the day, to some super dooper #OzDOC chat topics, to other good reading within the Diabetes Online Community. There seemed to be no shortage of ideas, and I was pushing myself to get these ideas into blog posts. I was churning out more writing than normal, and it got to the point where blogging stopped being fun.

To top it all off, the peak of my burnout just happened to be on the #DayOfDiabetes that I was so looking forward to participating in. The #DayOfDiabetes where the Diabetes Online Community would partake in a day of live tweeting their condition. It pained me to Tweet this, but I had absolutely no energy or motivation to take part in #DayOfDiabetes (or to even read your Tweets like I promised).

So, how does one deal with, and hopefully overcome, blogging burnout?

I stopped.

I logged out of Twitter, I logged out of WordPress and I put my foot on the brakes.

I took some time to do some of the other things that I enjoy. Like watching the new season of Survivor Second Chance that I’ve been looking forward to ever since it was announced. Finally finishing my 877 page book that I’ve been reading for several weeks. And spending some time in the sunshine and fresh air.

I reminded myself of why I write. Because it helps, and motivates me. I reminded myself of why I love being a part of the Diabetes Online Community. Because you inspire me, and help me feel less alone. And I reminded myself of all of the good things that have come from this experience.

Two days later I finally felt inspired to write again, thanks to a compelling #OzDOC chat topic that week. I brought my laptop outside and wrote for a while in the sunshine, before switching off again for much of the weekend.

And going forward, that’s what I intend to do. To keep writing when I’m inspired. To keep writing from the heart. And to keep having fun. I won’t push myself to write when I don’t feel like it, and I won’t write more than my usual four posts a week for the time being.

Also for fun, I’m taking on the #DOCtober photo challenge this month thanks to Kerri at Six Until Me. I will do my best to post a diabetes related photo each day with the hashtag #DOCtober – follow me on Instagram to keep up!

https://instagram.com/p/8VXj1fg_QVEDvRc9IE8v0unsIyvPIjc58eFfc0/