Month: September 2015

Diabetes Horror Stories in the Media

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Last night’s episode of 7.30 was rather confronting with some of the harsh realities of diabetes in Australia. We were introduced to one of Australia’s many diabetes “hotspots,” Blacktown in New South Wales. We were told that 40% of patient blood tests in the Blacktown Hospital emergency room showed diabetes. One third of those patients were unaware that they had diabetes, and another third were pre-diabetic.

We were introduced to a woman who ate her way to type 2 diabetes with junk food. We were told by the CEO of Diabetes Australia that one quarter to one third of hospital beds in Australia were filled with people suffering from diabetes complications. And we were introduced to an elderly woman who thought she had reasonable control of her blood sugar levels, only to be told by doctors that she needed to have her foot amputated.

Honestly, I just feel torn when I see these diabetes horror stories in the media.

Yesterday I wrote about how strongly I feel about not seeing the people around me develop diabetes. And how I am all for doing my bit to help prevent new cases of diabetes.

And then I see stories in the media like the one I saw last night. Stories that leave me stunned. Stories that leave me fearful. Stories that make me want to find a corner and curl up into a ball.

It doesn’t matter how average, how decent or how good of a job I feel like I’m doing. I see stories like these and all of that work is reduced to shreds. I’m beating myself up again. I’m thinking about all of the bad decisions I’ve made. I’m thinking about all of the potential damage I’ve done to my body. I wonder if I will be one of those diabetes horror stories, one day. And I wonder if there’s any point in trying.

But these stories are true. They do happen. Is it fair for me to attack them, or to pretend that they don’t happen in real life? I don’t know.

I guess all I’m trying to say is that there are people watching these stories who are already living with diabetes. Some of the people seeing these stories are trying their very hardest to manage, and stay on top of this rollercoaster of a disease. And horror stories like these don’t give them much of an outlook, or motivation to keep going.

Prevention is important. But support and encouragement for those already living with this disease is equally important, too.

The transcript from last night’s report on the 7.30 program is here. You might be able to watch the report too, depending on geography restrictions.

I Will Happily Shoulder the Burden of Diabetes

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I can still remember something that my Mum once told me. It was shortly after I was diagnosed with diabetes. And it was something that I don’t particularly like to think about. We were sitting at the dinner table one night talking about diabetes, my outlook for the future and the hope that there would be a cure in my lifetime. And then Mum told me that she wished she could take my place. She wished that she could have insulin injections instead of me.

As kind a sentiment as it was, I honestly couldn’t think of anything worse. The thought of my Mum having diabetes scares me. The thought of seeing any of my family members develop diabetes scares me. There was a time where my brother was feeling a bit deviod of energy, and I was jumpy. I was scared out of my mind that he could have diabetes, too.

I know how physically exhausting it is to deal with this disease day in, day out. I feel the trainwreck of emotions that diabetes puts me through every single day. And diabetes sends me jumping through an infinite number of hurdles that life throws at me.

I live, and deal with diabetes day in and day out. I know that I am more than capable of living, and dealing with diabetes each and every single day. And truth be told, I am happy to be the one to shoulder the burden of diabetes in life. I will gladly be the one in my family to have diabetes. If it means that I won’t ever have to see someone I love go through what I have to each day, then having diabetes will all be worth it. And if there is something that I can do to prevent others out there in the world from going through what I do each day, then I am all for it.

The International Diabetes Federation’s Call to Action on Diabetes campaign has caught my attention on social media over the weekend. The campaign calls on us to reach out to our political leaders on Twitter and urge them to take action on Sustainable Development Goals (#SDG) that will help to prevent the global epidemic of diabetes. To help minimise some confronting diabetes statistics like these:

  • 387 million people have diabetes; by 2035 this will rise to 592 million
  • The number of people with type 2 diabetes is increasing in every country
  • 77% of people with diabetes live in low- and middle-income countries
  • The greatest number of people with diabetes are between 40 and 59 years of age
  • 179 million people with diabetes are undiagnosed
  • Diabetes caused 4.9 million deaths in 2014; Every seven seconds a person dies from diabetes
  • Diabetes caused at least USD 612 billion dollars in health expenditure in 2014 – 11% of total spending on adults
  • More than 79,000 children developed type 1 diabetes in 2013
  • More than 21 million live births were affected by diabetes during pregnancy in 2013

Join the Action on Diabetes campaign by visiting www.idf.org/action-on-diabetes and tweeting out a message like this one:

The type of diabetes I have may not be preventable, but others are. And if there is something I can do to prevent others from going through what I have to each day, then I am all for it.

How Much Does Mum Think About My Diabetes?

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I was diagnosed with type 1 diabetes at an age where I was able to manage it on my own. I’ve always wondered how much my parents actually think about diabetes, since I don’t like to burden them with too many of the details. My Mum has kindly written a guest post today to answer that burning question.

We are so proud of you Frank, that you manage your diabetes yourself. I must admit, in the beginning when we were learning about type 1, I didn’t know how you would cope. I myself found all of the information given to us mind blowing. There was just so much to take in.

So, fast forward five years and you ask the question, how much do your parents think about diabetes. Obviously, over time, the focus has changed. You have proved that you can manage your diabetes yourself, so that element is a relief for us. But we never stop worrying. Just knowing that you could black out if you went too low is always at the back of my mind. I am so relieved that I have never had to use that glucagon kit that we have in case of emergency.

We worry when you are out by yourself, especially since you don’t like wearing your bracelet. You wouldn’t believe our sighs of relief when you returned from the apartment after doing the BridgeClimb that night in Sydney. We know that you don’t want to burden us with your diabetes, so we try to act calm even when we are worried silly. When we hear noises coming from your room in the middle of the night, we would love to come in just to see that you are okay. We know that you wouldn’t like that, but hope that you will let us know if you ever need help.

We notice everything. When you don’t have breakfast in the morning, when you don’t eat all of your lunch at work and the times where you don’t eat much at all. We notice when you are grumpy and don’t want to talk, when you eat heaps of sweets and junk food, and when you look tired or unwell. Living in the same house, we know when you are checking your levels. We see you giving your insulin. We even notice the boxes in the fridge! I even feel guilty that we can just have a piece of chocolate in front of the TV without giving it a second thought, whereas you have to decide whether you are going to have it or not.

I talk to my friends about diabetes. I try to explain it to them. Most people, like we used to, know nothing about type 1 diabetes. Living with someone who has type 1 diabetes has made us more aware of the foods we eat and our lifestyle. Especially sugar and fat rich foods and recipes. Whenever someone in the family is sick, I make sure there are no diabetes symptoms. Any one of us could get diabetes. I’m very conscious of type 2 diabetes as well. So many people have it and it can be avoided!

Reading your blog has been great and I can see a difference in you. Connecting with people going through what you go through every day has made you more open and confident. It’s good to see you taking an interest in diabetes and not shying away from it.

Diabetes has become part of our lives. We don’t realise it, but “it’s there.” We have become diabetes aware. Whenever anything is reported in the media relating to diabetes, we take notice. Who can think of Sir Charles Gardiner Hospital without thinking of the wonderful Diabetes Clinic there. We know when it’s National Diabetes Week. There’s the NDSS. The Run For A Reason supports diabetes. We take notice of celebrities and sportsmen who have diabetes. We read your Diabetes WA newsletters that are sent to our e-mail. We hear of all the research that is being done into diabetes and we always hope that a cure might be possible in the future.

We are always thankful and happy that you will be able to live a normal life, and that we live in a country where we have access to doctors, hospitals and good health care. Even though we don’t have diabetes ourselves, we like to think you consider us supportive. You may not think we understand, but if you don’t include us with what is happening then it is more difficult for us. We are here sharing the journey with you in our own way whether you like it or not, whether you include us or not. Don’t ever forget that.

“How Are You” Makes a World of Difference

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“How are you?” These are the three words which I absolutely hate to hear, but can’t seem to get away from. Almost every person who I pass during the day utters those words, and I hate it. I know they’re not doing it on purpose. I know that they’re just trying to be nice. But I never feel that question is a sincere one.

Do they really want to hear about my lousy diabetes day as we pass each other in the hallway? I think not. Is it fair for me to dump all of my problems onto them when they’re just being polite? Absolutely not. Most of the time, I give my enthusiastic-sounding “yeah, good” response and go on my way. I feel like a robot with no personality when I give the same stock standard response every day. I feel guilty for not saying “how are you” back. But I’m not going to say those words unless I really mean them. And I’m not going to give a genuine response unless the situation allows for it.

In the diabetes world, however, this couldn’t be further from the truth. In the diabetes world, I don’t feel that get asked “how are you” enough. I yearn for my doctor to ask me how I am. And I don’t mean how my diabetes management is going. I don’t mean how my blood sugar levels are. I don’t mean how my latest hba1c result stacks up from last time. And I don’t mean how was that blood test that he ordered last time I was here.

I want to be asked about how I am coping with having diabetes day in, day out. I want to be asked how I feel when I wake up in the morning ridiculously high, despite feeling that I did everything right the day before. I want to be asked how I feel when I wake up in the middle of the night sweating and shaking because I’m terrifyingly low despite all my efforts to avoid it from happening. I want to be asked how I feel when my mind is plagued with thoughts of nasty complications that could affect the quality of my life. And I want to be asked about my small diabetes victory that feels like a massive achievement.

Don’t get me wrong, I am happy with my health care professionals for the better part. And I am happy with my diabetes management, for the better part.

But when I’m in the diabetes world, hearing those three words “how are you” is enough to turn my day around for the better. And while it may seem like nothing to my doctor, hearing the words “I get it” can make a world of difference.

More how-are-you’s from healthcare professionals, please.

Finding My Voice Inside, and Outside of the #DOC

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One hundred posts ago, I knew nothing about diabetes beyond my own ability to live with and manage it. I was diagnosed at an age where I was able to manage diabetes independently, and didn’t need to impose what I believed to be a burden on my family.

My Mum accompanied me to all of my hospital clinic appointments and diabetes education sessions during the first year after my diagnosis. But once that first year was over and my appointments became less frequent, I began to shut my Mum out too. She would ask me how my blood sugar levels were going from time to time, and I would give vague answers. I made sure to reply in a way that she would notice bothered me. I didn’t want to talk about diabetes. I didn’t want to tell her that my numbers were imperfect. I didn’t want her to worry. And most of all, I didn’t want to impose that burden of diabetes on anyone else but myself.

I barely knew anyone with diabetes in real life. I didn’t have anyone who actually “gets” it. Every time I tried to explain diabetes to someone, I felt like I was trapped in a bubble and my voice was coming out muffled on the outside.

My doctor would always tell me “you need to get your blood sugar levels down.” He never showed a shred of understanding to what I was going through. He never asked me how I was. Or how I was coping.

Sometimes keeping diabetes to myself felt like the easier option. That was, until this blog came along. That was, until the Diabetes Online Community came into my life.

This blog has given me a voice, and a space to express those feelings that I kept to myself for so long. It’s ignited an interest, and a passion for diabetes advocacy that I never knew existed.

If there’s a conversation happening in the real world, I feel more confident to add my diabetes perspective to it. If something interesting has happened, I’ll happily bring it up at the dinner table. And most of all, I feel so motivated to write and to share here every day. Have I become the person who shouts diabetes to the world at every opportunity? No. But this blog has definitely given me the confidence to talk diabetes much more in my real life than I ever have in the past.

It’s also given me a whole community of other people with diabetes that I never knew existed. A community that motivates and inspires me every day. A community that has given me a cushion of support to soften my landing during times where I feel like I’m falling. A Diabetes Online Community that I’m so proud to be a part of.

Today marks the one hundreth post on this blog, and I really can’t thank you enough. For reading, for supporting and for accepting me into this wonderful community. Each day I want to pinch myself because it doesn’t feel real. I will be forever grateful to have found it.

One hundred posts ago, I felt alone with my diabetes. Today, I feel fulfilled.

I have found my voice, and I’m here to stay.

Here’s to a hundred more.