Diabetes Musings

The Invisibility of Type 1 Diabetes

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Yesterday I shared Catherine’s story. One of the many type 1 diabetes parents dealing with, well, everything that you would expect (and more) from a young child with type 1 diabetes. A Continuous Glucose Monitor would be a massive relief for Catherine and her daughter, and would change their lives.

Seeing Catherine’s story on television, and the discussions that followed at home simply reminded me of just how invisible diabetes is. Not enough people are aware of what people with type 1 diabetes go through in order to manage their condition. People simply don’t see a lot of the aspects that we deal with in order to manage this disease. And our media certainly don’t give it a lot of attention, either.

Our media here in Australia spend a lot of time focussing on those “lifestyle” factors that may cause type 2 diabetes, in some cases. Which is fine. These are all serious issues, which can be prevented. I’m all for that. However, it just seems that I always hear about how we need to lose weight, how we need to eat less sugar, how we need to eat more fruit and veg, and how we need to exercise more. How this is an epidemic that will destroy the world by the year 2030. Okay, maybe I’m exaggerating there. But Mum could even recall being asked if I was overweight after telling an aquaintance about my diabetes a few years ago. It just goes to show how little awareness there is of type 1 diabetes out there.

I’m not blaming anyone for this. I’m simply stating a fact. There’s little awareness of type 1 diabetes out there because it’s simply an invisible disease. It’s easy to spot things like excess weight, unhealthy food choices and lifestyles that are lacking physical activity in the world. It’s not easy, however, to spot things like glucose monitoring, carb counting and insulin injections. It’s not easy to spot sleep deprivation, frustration and stress from dealing with, and worrying about type 1 diabetes. It’s not easy to spot parents who have had to take time away from work in order to properly deal with a type 1 diabetes diagnosis. It’s not easy to spot parents concerned about how their child, and school, will cope with type 1 diabetes.

I say that we do a pretty good job of keeping it together when we’re out there among the rest of the world. We’re pretty strong people, you know.

And that’s where Catherine’s story comes in. She did a fantastic job of advocating for all of us type 1s, and helping to shed some light on the issues that we have to deal with behind closed doors.

I can only hope that this media attention will help deliver technology that will change the lives of many young families in Australia dealing with type 1 diabetes, and help make this disease a little less invisible.

I almost forgot my #DOCtober photo yesterday, so my last minute photo idea at 9pm was to change my Lancet!

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

 

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.

Why Are Our Obesity Campaigns So “Nanny” Like?

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Yesterday, October 11, was World Obesity Day (and if you’re in the US or the UK, then technically it’s still World Obesity Day).

Obesity is an epidemic. The World Health Organisation estimated that the prevalance of obesity worldwide increased from 11.5% of adults in 2010 to 13% of adults in 2014.

Obesity can lead to type 2 diabetes in some, but not all cases. Essentially, people could have to deal with some of the things that I write about in this blog as a consequence of being obese.

And on World Obesity Day, we are being asked to call on governments to act in order to meet our target of halting obesity to 2010 levels by the year 2025.

Here in Australia, we have had many campaigns over the years to tackle obesity. Most recently, we’ve had the Live Lighter campaign. You know, the one with that lovely visual of “the toxic fat inside your body that grows around your vital organs.”

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Behind that confronting visual that you see on the TV, there’s also a bright and well meaning website full of advice to encourage us to live healthier lifestyles.

We’ve also had the Rethink Sugary Drink campaign, which literally presents to us the amount of sugar in soft drinks, juices, energy drinks and so on. Which isn’t a bad idea either.

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One honest flaw that I find in our campaigns here in Australia is the fact that they come across too “nanny” like. In all honesty, watching those ads seemingly telling me “not to have a single sip of soft drink” makes me more inclined to do it for the sake of rebellion. Try telling your kid that he can’t have that toy he picked up off of the shelf. He’ll probably be more likely to chuck a tentrum in the checkout queue than if you hadn’t said anything.

Then there’s the scare tactics and horror stories, like the image of the toxic fat. Scaring people is not okay in my book. Blaming and shaming people is not okay in my book. And employing these tactics does nothing to motivate the people who need it the most.

At the end of the day, the decisions on what we eat and drink are ours. It’s good to have the facts, and the statistics there. But it’s up to us, the consumers, to figure out for ourselves that an excess of unhealthy lifestyle choices can harm us. And that’s what our campaigns are missing. Believeability. Patient voices. Real, first hand experiences and stories that will appeal to me, the average Australian. That will help me to come to these conclusions on my own. To seek out those helpful websites on my own. So today, I will get the ball rolling.

I’m Frank, and I am a person with diabetes. I am essentially living with a disease that in some cases is a consequence of being overweight. It’s my job to keep my blood sugar levels between 4 and 8 every day. This means pricking my finger as much as 10 times a day. This means sometimes waking up in the middle of the night to make sure that I’m not too high or too low. I need to think about every piece of food that I put into my mouth. I need to think about every activity that I plan on doing. It plays a rollercoaster on my emotions. And if not managed properly, it could impact on the quality of my life.

I wouldn’t wish diabetes on anyone. I couldn’t do anything to prevent my diabetes, but perhaps you can.

You can also read the International Diabetes Federation’s statement on World Obesity Day here.

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.

I Can…Still Hurt Myself At Work Like Anyone Else

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At the moment it seems like every piece of equipment at work is causing problems. From the sewerage pipes that have been spewing litter into our loading area, to the broken air conditioning, to the noisy speakers that the boss refuses to turn down, to the broken dock leveller and to the cardboard press that is always getting blocked up. There is also a lovely swarm of bees that have made a springtime return to their familiar little hidey hole just outside of our roller door where we accept deliveries.

And the swear words that come out of my mouth during the day seem to be multiplying because of all these problems.

It was lunchtime on Thursday. It had been a crazy busy morning. We had the roller door pulled about one third of the way down in order to keep those bees out of our warehouse. I had just finished accepting a delivery, and our dock ramp was elevated. I walked up onto the elevated dock ramp, so that my weight would bring it back down to ground level. And in doing so, I smacked my head hard onto the roller door that was pulled one third of the way down.

I was pissed off. I swore. If my Mum was there, she would have told me off for not looking at what I was doing. I walked over and sat down for a few moments to rest, until one of my work Mums noticed that I had a small gash on my head and was bleeding. It was nothing serious. The cut was not very deep, and a once over with some alcohol wipes did the trick. Except for all of those “oh, what did you do to yourself there?” questions that followed for the rest of the day.

I always pride myself in the fact that diabetes doesn’t affect my job. Diabetes hasn’t stopped me from doing the things that I want to do. And even though I hurt myself that day, it was a nice reminder that I am still able to hurt myself like anyone else. In a weird way, that smack on the head made me feel normal. Diabetes hasn’t stopped me from doing the same job that my colleagues without diabetes do each day. Diabetes hasn’t confined me to a job of restricted duties and being over-precautious. And I might even daresay that I get more work done that some of the other people there who don’t have diabetes. Just saying.