Diabetes Musings

The Advice I Would Give to My Newly Diagnosed Self

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I’ve lived with type 1 diabetes for eight and a half years. Depending on where you sit on that spectrum, that will either feel like a remarkable feat or nothing more than a drop in the ocean.

I can remember the isolation I felt when I was diagnosed. I can remember locking myself in my room, and burying my face in my hands when I had the umpteenth hypo of the day. Or dropping the f bomb and smashing my fists into the wall when I woke up to a BG of 20.

Those things still do occasionally happen. Only the other night, I had been rage bolusing insulin all evening and was getting extremely agitated with every swipe of my FreeStyle Libre reader. When bedtime rolled around and my BG of 14 still hadn’t budged, I swapped out my insulin and changed my site, furious that I wouldn’t make it to bed on time.

But, I’ve come a long way in those eight and a half years. The one thing that stands out to me most in my journey, is that I have never stopped learning. There are so many things that I wish I had figured out sooner. So many tricks of the trade that mean those frustrating, sweary, agitating blood sugar related things don’t happen so often anymore.

If I could go back and give some advice to my newly diagnosed self, these are some of the things I would say.

Get online, and take an interest in diabetes.

Take your diabetes gear with you every time you leave the house.

Food is fuel for your body.

Focus on eating fresh food, and meals that you’ve prepared yourself.

Commit to basal testing, and carbohydrate counting.

Eating when your blood sugar is high, will only send it higher.

Diabetes will affect you emotionally, just as much as it will physically.

Diabetes management is a marathon, and not a sprint.

You can read my advice in full in my special column for World Diabetes Day over at Diabetes Daily. I’m extremely proud of it.

‘Dumbing Down’ Diabetes

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So, how does it work?

The pump does two things. It continuously delivers a rate of insulin in the background to keep me stable. Then I also press a few buttons on the pump to deliver insulin every time I eat. The other end of this line just connects to a little piece of plastic that sits underneath my skin. 

So, do they have to implant it?

No.

And you don’t need to use any needles?

No.

I definitely feel guilty of ‘dumbing down’ my diabetes when I’m trying to explain it to people who don’t have diabetes.

I’m more than happy with this approach. I don’t have to twist my tongue trying to explain the complexities of this freaking condition every time, and those on the receiving end will get my point more easily.

But I guess the one little flaw in this approach is that the people around me will never see just how many decisions go into managing my diabetes each and every day.

Nobody sees the fasting that I have done at all ends of the day in order to ‘test’ the rate of background insulin that the pump infuses into my body every three minutes. Nor all of the decision making that goes into adjusting those background rates of insulin to get them perfect. The same could be said if I were managing on needles.

Nobody sees me searching for the carb counts of different foods on my phone, weighing food items on kitchen scales and doing the maths to come up with a carb count for a meal so that I can tell my pump how much insulin to deliver.

Diabetes needs to be considered in almost every single activity that I undertake, and nobody sees just how heavily all of these decisions weigh on me. It’s hard to separate emotion from the numbers that show up on my blood glucose meter, given they’re a direct result of the decisions I’ve made. A ‘good’ number can totally validate the decision I’ve made, while a ‘bad’ number can make me feel guilty or a failure.

3,099 days with type 1 diabetes might feel remarkable, but the number of decisions I’ve had to make on my own in that time amounts to much, much more than any of these stats could ever show.

Why I’m Opting Out of a My Health Record

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Back in July, as I was no doubt scrolling through Twitter, news broke of the commencement of the opt our period for My Health Record. I did feel a little standoffish upon learning that I would have a My Health Record automatically created for me in November without my permission. Naturally, I was leaning toward opting out of it.

I guess a My Health Record is like a digital version of the charts that my doctor and Diabetes Clinic keep on me. The idea of the digital My Health Record is that this information would be accessible to other healthcare professionals or places of care that I may choose to visit now or in future. I hear that I would still have access to this information, and control who I choose to share it with.

I guess, in theory, it’s not a bad idea.

Every new healthcare professional that I see would have all of my information available to review prior to a pending appointment. This would mean that they would be better prepared upon my arrival, and we would be able to make better use of the very limited time that we have together.

I wouldn’t need to complete forms while I am seated in the waiting room, asking the same questions over and over again.

I wouldn’t need to explain that I have type 1 diabetes, or have to endure the looks of confusion on my healthcare professional’s face, as though I’ve just complicated our whole appointment by flagging my health condition.

I wouldn’t have to respond to thoughtless questions about how ‘controlled’ my diabetes is, because my healthcare professional would be able to see a summary of my ‘compliance’ by attending diabetes checkups. Nor would I need to reframe my healthcare professional’s view that diabetes is something I continuously ‘manage’ rather than something that I am able to permanently ‘control’ (or not control!).

There would be far less errors in care or courses of treatment given, thanks to all of this additional information available prior. The quality of the care I receive would be richer, and I would walk away feeling that my time in the company of a healthcare professional was productive.

In theory, it’s a nice idea. I only wish that I believed it.

I expect that many healthcare professionals, particularly those in public care, would be far too busy and ‘stretched thin’ to thoroughly review any additional information they have on me via a My Health Record, particularly that pertaining to my type 1 diabetes.

I expect that there would still be errors in the courses of treatment given, particularly among those who aren’t able to advocate for themselves. I’ve seen a few loved ones now sent home from hospital well before they should in order to clear a hospital bed, watched them suffer at home for a few days, only to wind up back there a couple of days later.

People who don’t have the luxury of being well connected, or able to pay for private healthcare services are often pushed onto long waiting lists or left to fend for themselves.

Earlier this year, I only just received a referral to dermatology that my endocrinologist gave me four years ago (safe to say I had completely forgotten about that one!). People newly diagnosed with diabetes often tell me that they were told to exercise and lose weight by their doctor, but aren’t being linked in with the allied healthcare professionals who can actually explain to them what that means.

Sorry to sound skeptical, but I don’t believe that a My Health Record will enrich the quality of care that I will receive.

But maybe you do. That’s great! Regardless of where you stand, it’s important that you do your homework and make a decision as to whether you would like a My Health Record automatically created for you. The official website is here, and you’ll need to opt out before November 15 if you feel it’s not for you.

I will also leave this video here. My friend Emily, who lives with type 1 diabetes, was featured in this video endorsing My Health Record.

JDRF One Walk

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Yesterday, I braved a wet and blustery Sunday morning to participate in the JDRF One Walk.

I’ve heard of these walks that happen all over the globe each year, with a goal of funding research into a cure for type one diabetes.

To be honest, I don’t know too much about what JDRF does, but perhaps I’m not looking hard enough. However I do know from my own peers in the diabetes community, just how phenomenal JDRF’s impact is through the passionate individuals who are actively raising funds. Thank you.

My effort was, quite honestly, a last minute and half-arsed one. I joined to provide some moral support to my fellow Young Adult Diabetes Committee members, who as a team impressively placed sixth or seventh for funds raised. Go, team!

I am truly inspired by some of my peers who have impressively ran marathons while managing their diabetes in the name of charitable causes. I feel that if and when I do decide to ask the people around me for money, it should be for a cause that I am truly throwing my energy and efforts behind. This was not it. That idea is still sitting in the ‘some day’ basket in my brain, but one that I haven’t lost sight of.

It seems my effort in managing my diabetes around the walk was equally poor. After waking up to a blood sugar of 9.8 thanks to pizza the evening prior, I knew I was off to a less than ideal start. Correcting at the start of a walk that I thought would last ten or fifteen minutes, ended with a low at the finish line an hour later.

The blustery 5km walk took us across the Swan River, down the foreshore, over the new Matagarup Bridge, past Optus Stadium and back to Burswood Park where we were greeted with some rain.

I was equally rewarded for my efforts with a truly dreadful coffee from the coffee van, and overripe bananas from the Coles stand.

This was my first time participating. I had some excellent company around me, and I definitely haven’t lost sight of putting more effort into actually doing something like this. Some day.