Dealing with Diabetes

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/

 

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.

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.