Diabetes Instinct

“Frank, when you first got diabetes, what were the symptoms?” Mum asked me on the weekend. 

Of course, Mum knows the symptoms of diabetes well enough. But I knew exactly why she was asking. I was actually thinking the exact same thing myself.

“The weight loss was the very first thing, but that was a few weeks before I was diagnosed. I didn’t even notice that until the very end. Then I started to feel a lack of energy, and the thirst, a few days before. Eventually I couldn’t even get out of bed.”

“Were you eating?” (if you want to get Mum worried, just tell her you don’t feel like eating!)

“Yeah I was, up until a couple of days before.”

My sister hasn’t been feeling well. It seems like a bit of a virus that’s been lingering around over this past week or two. 

Of course, I know the symptoms of diabetes all too well. I still remember my own, as though they happened only yesterday. I was certain that this was nothing to worry about. But I could still feel the knots in my stomach, turning. I was anxious, and I could feel myself begin to tremble as we were talking it through. 

That instinct was still there. That instinct of diabetes symptoms will always be there.

I hate this disease. I hate how time consuming it is, I hate how much I have to think about it, and I hate how I feel because of it. There’s only one thing I can think of that would be worse than having diabetes itself. That would be having to see any of the people that I love live with it.

In this very moment, as I am writing this, I realise exactly how all the courageous diabetes parents and families in the world feel.

I realise exactly how my own loved ones feel. When they hear the prick of a lancing device. When they hear the clicks of my insulin pen. When they see me shoving sugar down my throat. When they hear noise coming from my room at 2am in the morning. 

I’m not ashamed of my diabetes.

Diabetes hasn’t held me back from doing anything.

I don’t spend my time worrying about diabetes.

But knowing that my loved ones have to see me live with this disease day in and day out, is far worse than having diabetes itself.

A Good Listener

In my day job, people talk to me. People talk to me a lot.

I guess you could call me the middle man between the people in my workplace and our Union. People often come to me with their issues, questions or concerns. It could be anything from working hours, to classification of duties and pay, or to general conduct in the workplace. I can provide some guidance, go and find additional information, or connect them to someone within the Union.

It’s not exactly a paid job. There are a few perks. Like free lunches. Coffees. Conferences held in fancy venues. Goodie bags, and the occasional freebies. However for the most part, I’m simply an employee taking an active interest in the welfare of my workplace.

All the time, I am asked what exactly it is that I do in this role. And most of the time, my answer is simple.

I’m a good listener.

It’s about being able to listen to someone in the staff room who needs to get something off their chest. It’s about going up to someone and asking them if they are all right. It’s about being knowledgeable and helpful for the inquisitive people (myself included) who like to ask a lot of questions.

Sometimes the concerns are genuine ones, and I will be able to help them out. Other times, I can simply offer them my time. I can offer them my undivided attention. I can try to be as helpful as possible. I can keep these matters in the strictest of confidence. I can also respect that every concern being raised is important to the person asking.

Some healthcare professionals could certainly take a leaf out of my book.

Sometimes I’ve been made to feel like a worry-wort when bringing up issues that might seem insignificant. Sometimes I feel like an absolute idiot when a big concern that I’ve worked up in my head is absolutely nothing. Sometimes those feelings of relief are overshadowed by feelings of guilt for wasting a busy professional’s time. Other times I simply don’t feel that anything helpful has come from a consultation.

However, I don’t know any better. I am simply the patient, with the best of intentions towards my health at heart. It often takes a great deal of courage to raise an issue with one of my healthcare professionals. As a person with diabetes, this could mean accepting that I am ill. This could mean sharing sensitive information about my diabetes management. This could mean confirming a devastating diabetes complication. This could mean setting off a wave of guilty feelings and what-ifs.

I need undivided attention from my healthcare professionals. I need to be treated like the most important person in the room. I need to be shown empathy when I am talking. I need support and helpfulness during consultations. I need to be commended for coming in, and for taking my health as seriously as I possibly can.

I need motivation from my healthcare professionals to keep taking my health seriously, because my diabetes isn’t likely to go away anytime soon.

Being a good listener is a good start.

The Severity of My Illness

I am constantly reminded of the severity of diabetes in the media.

In the past, I haven’t often worried about my diabetes and it’s impact on my long term health. I am finding, however, that as my diabetes is getting older and I am taking more of an interest in my health (cue this blog), things are changing. During restless nights on the couch or in bed, I do find myself thinking about how my body is handling unpleasant blood sugar swings. Can it handle them? And for how much longer?

I’m sure I’m scaring myself silly. But as I’m reading through some confronting statistics in Diabetes Australia’s Insulin Pump Therapy in Australia: The Case for Actionthe severity of the very disease that I live with hits home.

The incidence of type 1 diabetes in Australia has grown at a rate of 30% in the past decade, and there are over 3,000 new cases of type 1 diabetes every year.

High average hba1c levels are a strong indicator of the risk of developing long term diabetes complications.

The annual cost of type 1 diabetes to the Australian health system is $570 million, and the average cost per person is $4,669.

Finally, some people with type 1 diabetes cannot achieve optimal blood glucose control without the use of diabetes technology.

Sure, those haunting statistics aren’t intentionally targeted at me. Diabetes is rather an invisible condition. A lot of the people around us don’t see, or realise what we go through day by day in order to stay alive. As one of my readers, Maria, pointed out last week, sometimes we have to get serious in order to get our point across to those people who matter (politicians anyone?).

Yet, in spite of all of these factors, there are still so many barriers in Australia that prohibit us from doing what we are told to do.

The NDSS only subsidises around 5 test strips per day.

Potentially life changing Continuous Glucose Monitors are out of reach for many, as they are costly and not currently subsidised by the Australian government.

There are so many barriers to insulin pumping in Australia. Cost. Location. Income. Ability to afford private health insurance. Availability of health care professionals.

I also feel that more could be done to encourage diabetes technology, social media and other innovations in d-management. If you are a part of the Diabetes Online Community on Twitter, you’ll find a lot of enthusiastic insulin pumpers and CGM users. You’ll find a lot of engaged, passionate people who are always willing to provide helpful advice and friendly support. You’d be hard pressed not to be inspired and motivated by such an amazing community of people.

But thinking about my own journey prior to finding the diabetes community, the sad reality is that DOC is probably not representative of the entire diabetes population.

That, in my opinion, is the severity of this illness.

Finally, please wish Rodger Federer best of luck in tonight’s Australian Open Semi Final! 

Diabetes Online Community Down Under

I have very little Australian spirit. You need only watch me shouting at the overhyped Aussies in the Australian Open. Don’t even get me started on Nick Kyrgios…

However, in the spirit of Australia Day tomorrow, I would like to acknowledge some awesome people in our Australian Diabetes Online Community. Also because I’m going from memory here, I apologise in advance if I’ve gotten any of my facts wrong!

Melinda, one half of Twice Diabetes, always brings a great deal of knowledge, experience and helpful advice to conversations in the DOC. She’s also not afraid to call it like it is where diabetes organisations are concerned.

When I first connected with Maureen at Mum of Type 1, she was concerned about a future for her teenage son with type 1 diabetes. She’s since joined the ranks of the Twitterverse, written to politicians, fundraised, and continues to blog as her secret therapy!

Renza at Diabetogenic is very honest and relatable, and she’s not afraid to tell us that diabetes is plain crap to live with. Working for a diabetes organisation in Australia, her writing also gives us the insider’s view on her advocacy work.

I feel like I have a lot in common with Georgie at Lazy Pancreas. We were both diagnosed with type 1 in 2010 at roughly the same age. A diagnosis with type 1 presents unique challenges at every age, and Georgie articulates in her writing what I often feel myself.

As the title of her blog suggests, Rachel at Yoga For Diabetes lives and breathes yoga. When Rachel was diagnosed as a LADA a few years ago, she wanted to show others how yoga could benefit people with diabetes. She now has dedicated social media channels, and a book in the works.

Kyle at Training T1D displays admirable determination in not letting diabetes get in the way of his cycling. He impressively navigated his blood sugar levels through the JDRF Ride to Cure Diabetes in South Australia this month, and raised over $4,000 in doing so.

Ashley at Bittersweet Diagnosis was initially diagnosed as a LADA before becoming insulin dependent. Ashley is a dietician, and recently travelled to Vancouver where she was elected as President of the International Diabetes Federation’s Young Leaders in Diabetes program.

I’ve always wondered what life would be like if I was diagnosed a few years earlier while I was still at school, and everyone ‘knew.’ Bec at A Diabetic’s Rollercoaster handles it with a lot of enthusiasm and humour, and I enjoy reading about how she navigates diabetes among her friends as a young adult today.

Then, of course, there’s the awesome Oz Diabetes Online Community who hangs out on Twitter every Tuesday night. I appreciate this group so much. I can’t say how awesome it is just to casually chat, bounce ideas and thoughts about, and laugh with a group of people who just get it.

Our online community here in Australia may be relatively small (to my knowledge, at least), but know that I really appreciate each and every one of your voices.

Happy Australia Day!