Support

Making DOC to Real Life Connections

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One of the best things that came from Diabetes Exchange in Sydney was the opportunity to make some real life connections with members of the Diabetes Online Community. In the past year and a half, online peer support has changed the way that I look at and manage my own diabetes.

More specifically, I’ve been drawn to a group called the Oz Diabetes Online Community, where I participate in diabetes support chats on Twitter every Tuesday night. The individuals in this particular group are the ones that I feel I can relate to the most. Theirs were among the first blogs I read. Their Tweets are the first that grab my attention in the morning. They live in the same country as I do, and we likely share a lot of similarities (and differences) about life with diabetes. The chance to meet some of these folks was a dream come true.

Mind you, I still can’t believe that this happened to me. I’m not an athlete or a celebrity, nor did I know anyone of influence in the room. I’m just an ordinary guy who happens to have diabetes. I kept waiting for the event to be cancelled, or to be scheduled on another day where I wouldn’t be able to attend. I was half expecting to be told that I didn’t have enough blog readers, or that I would be too expensive to fly over from Western Australia.

Going into this event, I definitely felt a little bit like the odd one out. I lived on the opposite side of the country, and I was probably the newest of all the bloggers there. I hadn’t met any of the others in attendance prior. I was a little nervous about whether I would fit in, and whether the other bloggers would be as nice as they seemed online.

I was so nervous on the drive to the Ovolo hotel in Woolomollo on Thursday afternoon. I wondered who would be the first person I’d meet. Would I run into Renza getting out of a taxi? Would I walk up behind Ashley at the reception desk? Would I bump into Georgie on the way to my hotel room? I wondered if I would even recognise them outside of their Twitter photo.

I was escorted up to my loft style hotel room, which was like nowhere else I had stayed in my life.


And, sadly, hardly enough time to enjoy it. I was nervously counting down the minutes until 4 o’clock. When I knew I couldn’t put it off any longer, I nervously proceeded to make my way down to the lobby for event registration. I instantly recognised Georgie, Kim and Ashley exiting the elevator on the opposite side of mine, and the nerves were instantly relieved.

It was super weird at first. Even though I knew these guys online, I didn’t know them, really. It was super weird as we sat down, and part of me wasn’t sure what I was going to say to them. Hey, great blog post last week? I’m glad the registration in the lobby lasted an hour, as it served as a nice ice breaker. By the end of that hour, I’d had a decent chat with Ashley, Melinda, and PR ladies Laura and Hannah, and I’d had a few words with Georgie and Kim as well.

It was great to chat with Drew and Matt, who I did not know of prior to this event, over breakfast on Friday. I was honestly in awe of all of Melinda’s life experience with diabetes, which absolutely shines through all of her activity online. I had a nice chat with Kim on the boat, as well as a few silly photos. Renza gave me a few words of encouragement about my upcoming pump day on the way upstairs to pack my bags on Friday morning. Georgie and I counted down together as we inserted the Libre sensors on our arms. I had fun Tweeting with Ashley during Friday’s proceedings, despite the fact that we were sitting next to each other. Although I didn’t get a chance to have a chat with Tanya, I was inspired by the story she shared about managing diabetes and achieving great things in a way that worked for her.

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I guess my biggest takeaway is that I no longer feel like such a stranger around these guys. While some of the bloggers aren’t in the same circles as myself online, I do feel closer to some of the others. I feel like I do Tweet these guys more often. I have now replaced most of their “online” voices in my head with their real ones. And some of them are now Facebook friends, as well.

I feel so privileged to have met these guys, and I’ll remember our time together fondly. Here are the list of attendees and their blogs:

Ashley of BitterSweet Diagnosis

Melinda of Twice Diabetes

Georgie of Lazy Pancreas

Kim of 1 Type 1

Renza of Diabetogenic

Tanya of The Leveled Life

Drew of Drew’s Daily Dose

Matt of Afrezza Down Under

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Disclosure: Abbott Diabetes Care paid for my travel and accommodation expenses to Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no expectation that I would subsequently blog, and all opinions expressed are my own.

Inside the Telethon Type 1 Diabetes Family Centre

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A few weeks ago, I had the privilege of visiting the new Telethon Type 1 Diabetes Family Centre in Perth, Western Australia.

It was a Tuesday afternoon in the midst of April school holidays, so I stepped inside cautiously. I could hear a familiar voice calling out to me. I was greeted by General Manager Rebecca Johnson, and by the looks of things I had the place to myself!

Behind the front desk, I met Crystal and Andrea who were wearing fairy wings, and in the middle of a game of Twister. Rest assured, they were only practicing for the centre’s Picnic In The Park outing on Thursday!

Opposite the front desk was a large kitchen, which I was told would be in full swing the next day for the Centre’s Kids In The Kitchen cooking sessions. The kids would be preparing morning tea for their parents, siblings and grandparents who were all welcome to come along.

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The place definitely had the vibe of a showroom, which is not too surprising considering that it was furnished by IKEA. As I walked around the place, I would never have guessed that diabetes existed here. It really was just a nice place to chill. If I were a kid, I don’t think Mum and Dad would have to drag me here for check ups. I don’t think my brother and sister would whinge about waiting around for me when they had several play areas to keep them entertained.

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I could see Mum and Dad taking a seat in the courtyard with a cuppa. It was definitely a place for the whole family to come to for diabetes support, without so much of a “clinical” feel to it.

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The Centre was funded by Telethon, a charity devoted to supporting sick children in Western Australia. The Centre is reliant on community sponsors, donations and volunteers – who are currently developing a playground directly behind those gates in the image above.

One of my burning questions for Rebecca was how a young adult like myself would fit into this place, if at all. The website and branding appears to target young children and families. Adult events at the Centre seem to be targeted specifically for Parents or Carers of type 1 children.

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Because the centre was funded by a children’s charity, there are strict criteria from the board in regards to the centre meeting the needs of children. Bec acknowledged the need for support services at the centre catering to young adults, defined as age 16 to 30. Many people, ourselves included, are diagnosed in that age bracket. Bec has recently had success in convincing the board to make the Centre more inclusive for young adults. Opened less than 12 months ago however, the Centre is still evolving. 

Young adults and children are welcome at Diabetes Clinics, which run every Friday and Saturday at the centre. Individuals and families are welcome to drop in at any time to access clinical support from a range of diabetes specialists. Support is also available at other times by appointment.

After a tour of the place, Bec and I headed upstairs and took a seat at the conference table. It was pretty cool to learn that we were both diagnosed at age 17 and a few weeks out from our 18th birthdays. Bec has used a range of diabetes devices and gadgets over the years. Currently she uses insulin injections, eats a low carbohydrate diet and uses a Continuous Glucose Monitor from time to time.

I could see how engaged Bec was in the Diabetes Online Community. I was humbled that she stumbled upon my little blog last year after I wrote this post, and took the time to reach out to me. A self confessed lurker, she frequents Twitter for her diabetes news and enjoys reading Insulin Nation and Diabetes Daily – coincidentally sites that I have written for! I also learned that DOC is actually spelt out D-O-C when spoken, rather than pronounced as one word!

One thing that Bec feels really strongly about is the need for young children to come to terms with, and accept their condition. Seeing adults living, and doing great things with type 1 can really inspire the children who come into the Centre. A type 1 diagnosis is not the end.

Stay up to date with what’s happening at the Telethon Type 1 Diabetes Family Centre on Facebook, and learn more at telethontype1.org.au. Special thanks to Bec for taking the time to meet with me.

Pieces of the Emotional Support Puzzle

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I’ve written a great deal about the need for more “emotional” support from diabetes healthcare professionals.

In my humble experience, I often felt a lack of emotional support from my endocrinologist and my doctor. I never felt that they had the time for me on a busy clinic day, and I didn’t really feel too important when there were younger children and families around who understandably required more attention.

It was often hard to open up and be honest with them for fear of judgement. My very first endocrinologist told me that I had very poor control, just weeks after my diagnosis, which you can read about here. Meanwhile, my general practitioner often told me that “my sugar levels are too high” without actually offering anything more substantial or helpful.

I’m amazed at the amount of “smart” comments that I receive, with suggestions that I should find a counsellor every time write about these issues. Comments like these always leave me second guessing myself. Am I too vulnerable? Over emotional? An attention seeker? A basket case? A person who shouldn’t be blogging?

So, it was really fantastic to see that psychologist Marisa Hilliard dedicated a session at the World Diabetes Congress in Vancouver last week to this very issue: diabetes healthcare professionals prioritising emotional wellbeing. I was also honoured that this post of mine was quoted in her presentation.

For the record, I certainly don’t expect that an endocrinologist or general practitioner should have to fill the role of a counsellor. They are qualified professionals in high demand. No doubt they have far better things to do with their time than listen to me blubber on about my diabetes.

However, I do expect that health care professionals will listen to me. I do expect that health care professionals will make me feel comfortable to open up to them. I do expect that health care professionals will look beyond what’s written on the charts and talk to me about what’s going on. I expect that health care professionals will show some empathy during consultations. And I expect that healthcare professionals will offer support and encouragement.

This is not a big ask. This can be done. Even on a busy clinic day. Even when time is limited. Even if you’re meeting me for the first time. Even if you are a general practitioner who is not a diabetes expert. Nobody has to be qualified to be supportive and empathetic, in my opinion.

Emotional wellbeing helps me to see value in my diabetes healthcare team. It encourages me to continue to manage my diabetes to the best of my ability. A good experience motivates me to keep in touch with my diabetes healthcare professionals and to ensure I have my regular checkups. Above all, emotional well being has helped me to prioritise my health. It’s the difference between walking out of the doc’s office holding back tears, or with the biggest grin that I can’t wipe off my face.

Obviously, my endocrinologist and general practitioner are only individual pieces of the “emotional” support puzzle in my diabetes care. I have my wonderful diabetes educator, Gwen, who has my undivided attention during every 60 minute session I have with her. I have my family at home, whom I have a newfound appreciation for in my diabetes care. I know that they are cheering me on every step of the way, even if they don’t have diabetes themselves.

I’ve also discovered the amazing Diabetes Online Community through blogging this year, who have come through for me in more ways than you would imagine. I can tweet something at 2am in the morning and instantly receive words of encouragement and advice. I have the wonderful Oz Diabetes Online Community who I can hang out with on Twitter every Tuesday night. I look forward to my coffee break every single morning, when I can sit back and check in with the Diabetes Online Community on Twitter.

I also have all of you who cheer me on through your support of this blog.

A year ago, I certainly felt very alone with my diabetes.

Finding emotional wellbeing has helped me to embrace it.

Type 1 Writes at the World Diabetes Congress!

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Last week at the World Diabetes Congress in Vancouver, psychologist Marisa Hilliard kindly quoted one of my blog posts in her presentation about prioritising emotional wellbeing from diabetes healthcare professionals.

One of my OzDOC friends Kim, who was at the conference, kindly tweeted one of Marisa’s presentation slides to me on Saturday morning.

My words sounded familiar, but I couldn’t put a mental finger to the exact post that this quote belonged to. I turned to Dr. Google, and who fetched for me a post from July titled “I Don’t Feel Like I’m Doing Enough.”

I have extremely mixed feelings towards this post. This was the very last post that I expected to be quoted. This post was extremely difficult for me to write. I wrote it on a day where I didn’t feel in a very good place with my diabetes management. It was one of my lowest points this year.

But after some deliberation, I decided that I am proud of this post. I’m proud of how transparent I was that day. I’m proud of how writing this post helped me to identify what I needed to find in order to manage my diabetes. I’m proud that I did share a vulnerable moment, because life with diabetes isn’t always smooth sailing. I’m proud of the fact that this post inspired a presentation advocating for emotional support towards people with diabetes.

Initially, I wanted to bury this post and forget about it.

Today, I proudly repost my words from July. (And tomorrow, I’ll weigh in on emotional support from diabetes healthcare professionals).

I’ve been stuck in a rut for a while. My hba1c levels are okay, I guess, but they’re not great either. And they’ve been stuck in that good, but not great phase for a long time. And right now, I just can’t stop thinking about this tweet from last week.

I have a love hate relationship with my doctor. I love how he can quickly dismiss my concerns when I’m not feeling well. But I hate that I don’t feel that anything constructive comes from seeing him. Every single visit usually goes the same way. He’ll tell me that my illness is “just a virus,” send me for a blood test and then tell me “you need to get your sugar levels down.” I’ll nod my head. I might even manage to mumble an “okay.” He’s usually running an hour behind, and I’ll be lucky to get five minutes in there before I’m pushed out the door. I know he’s not a diabetes expert, but it’s not like he even tries to offer any sort of genuine help.

Then there’s the endocrinologist. An endocrinologist appointment really does motivate me to do better with my diabetes. And I can talk to the endo, if its someone I’m comfortable with. But I don’t get to see them as often as I probably need to right now. If I’m lucky, I’ll get to see them twice a year. And if I’m extremely lucky, I’ll get to see the same endo both times. I’m due for an appointment right about now. In fact, I could really use an endocrinologist appointment right about now. And out of the whole six months that my appointment could have been scheduled for, it just had to be in the two weeks that I was on holidays. And now, the earliest I can reschedule for is January. January, for heaven’s sake. Being in the public health system can be so frustrating sometimes.

And I just can’t stop thinking about that tweet. I think there’s a good reason I wrote it. I need to try harder to find the support I was calling for in that Tweet. It’s well and truly time for me to get back on track. I’ve had my break. Perhaps too long of a break. I’ve had a lot of fun and enjoyed a lot of good food. And now, it’s time for me to hit that reset button that comes after a good break.

Normally, I would have accepted that wait until January for an endocrinologist appointment. Normally, I would make those excuses about work and life and being busy. But today, I’m going to give my Diabetes Clinic a call and see if there are any cancellations that have come up. And I’m going to make more time for diabetes. Because right now, I don’t feel like I’m doing enough. And right now, I want to feel better about myself.

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.