Diabetes Musings

The Story of How I Was Diagnosed

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This coming Monday will mark six years of life with type 1 diabetes. Today, I’m revisiting the story of how I was diagnosed.

The first week of May holds a lot of significance for me. It marks six years since the turn of events that led to my diagnosis with type 1 diabetes, and yet I can remember it as though it happened yesterday.

I was 17 and midway through my first semester of uni. I was struggling to find my feet among uni assignments, my new job, and my 18th birthday looming a few weeks away. I had decided to skip uni for a few days to try and make some headway with my assignments. I had about three or four separate papers to write, which meant hours and hours of reading through mindless PDF scholarly journals for references. It was enough to put me to sleep.And speaking of sleep, I was absolutely exhausted. I could not be bothered in the slightest. After many Facebook sessions, browsing breaks, heading to the kitchen for a drink and then going to the toilet, I had wasted away almost 3 days. And by Wednesday night, I had achieved next to nothing. And for the most part, I just thought I was being a lazy kid procrastinating on his uni assignments.

Enter Thursday morning and I really didn’t want to get out of bed. I felt weak and lethargic, and my mouth felt really dry. I just put it down to my inactivity over the past three days, then forced myself up and prepared a super healthy lunch to take to work. I don’t think I even lasted half an hour at work that day. I didn’t have the energy to stand on my feet that day. I knew something wasn’t right. I told Mum I had to see a doctor ASAP. And I NEVER go to the doctor.

At such short notice, I had to settle for the first doctor I could find. After explaining my symptoms, he told me it was just a virus and ordered bedrest and hot drinks for 3 days. Phew! What a relief it wasn’t anything serious…or so I thought.

I spent the next 3 days in bed, which speaks volumes for me. I NEVER stay in bed when I’m sick, but I had absolutely no energy to do anything else. With a dry mouth stripped of all its saliva, I was struggling to eat anything despite my Mum telling me to “eat something!” (Its an Italian thing!). All I really felt like were cold refreshing drinks. I was constantly craving Orange Juice on the rocks.

By bedtime on Saturday I was restless. My mouth was bone dry. I was on my third or fourth iced orange juice when my rumblings in the kitchen got Mum out of bed. “What are you doing, the doctor told you to have hot drinks!” Mum yelled. My heart rate and pulse were getting more and more rapid, and I was urinating at least once every hour. I spewed and felt slightly better. I don’t know if I would have made it til morning had I not.

By the time I woke on Sunday morning – Mother’s Day no less – I was panting. My heart rate was extremely rapid and I felt breathless. Added to the list of no saliva, extreme thirst, constant urination and lethargy. I told Mum and Dad how I felt. I knew I needed to go to hospital, but was too scared to suggest it. I had so much faith, so much trust in my parents, and I needed to hear them say it first for it to be a real possibility. We talked about going back to the doctor, but I shot it down. There was no point. I knew I couldn’t hold out that long. As soon as the h word was mentioned, I was out the door.

The car ride to the hospital was a blur. I was panting the whole time, counting down the minutes until we got there. What was wrong with me? Was I ever going to get my saliva back? Would I ever be able to eat again? Honestly, then and there, I wasn’t even sure that I would make it to the hospital conscious or even alive.

I was diagnosed with Type 1 Diabetes as soon as I walked through the door. If the hospital emergency staff picked up on my symptoms this quick, why couldn’t Thursday’s doctor? He could have saved me a whole lot of trouble and a whole lot of pain.

But looking back now, I wouldn’t have had it any other way.

After the ordeal I had been through, the relief of being able to get back to normal far outweighed coming to terms with diabetes, finger pricks and insulin injections. I don’t know if I would have embraced diabetes as well as I did had I not gone through this.

And I have a story to tell. I have memories that will last me a lifetime. I’m a stronger person because of what I’ve gone through. And, if anything, its made me even more passionate about diabetes awareness.

  
  

Updated: I’ve now climbed the Sydney Harbour Bridge twice. They were among the best experiences of my life, and it goes to show that diabetes hasn’t stopped me from living a normal life.

Why Blog?

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My conversation with Rebecca Johnson at the Telethon Type 1 Diabetes Family Centre prompted some serious questions about my blog. Some of which I’ve never really thought about too seriously, and others that I’ve shared little tidbits about over time. Today, I’m popping it all into one post.

Why did I start to blog?

I love writing. My dream is to write for a living someday. I started this blog in January 2015 as a bit of a creative outlet to complement my studies in marketing and communications. I guess, even today, this blog remains a glimmer of hope that one day I might find work more closely aligned to where my passions lie. 

Diabetes seemed like a natural choice to write about. I didn’t even think there were many diabetes blogs out there, let alone an active community sharing their stories online. I know so much more about diabetes than I ever did before I started my blog. I am far more empowered and passionate about the condition that I live with, and I credit that to being a part of the diabetes community.

Is it hard to come up with ideas for blog posts?

It was definitely difficult to come up with ideas in the beginning, and get them onto paper cohesively. Today, the ideas come to me quite naturally. I’m really interested in what’s going on in the diabetes community. Diabetes follows me around in whatever I do, and something interesting always happens along the way. It’s amazing how the tiniest thing can become a blog post. Like, for example, finding a test strip on the hotel room floor. Other days I just want to empty out what’s on my mind, such as this post from last week. You get better at it over time.

Do I feel the pressure to constantly pump out content?

To be honest, I’ve surprised myself in being able to write so much here since I started. It’s more a thing of personal pride that motivates me to keep going. I’m really proud of my writing. I’m proud of my own personal development with my diabetes since I began this journey. I’m really proud of this space that I’ve created, and that people can come here to find a new post almost every day of the week. That was always the vision I had for my blog when I started it. 

How has Type 1 Writes evolved over time?

When I started Type 1 Writes, I imagined it would be more of a thing where I would give diabetes advice and lifestyle tips. I don’t think I realised the value of my own voice and my own story until a little later when I began to connect with others in the Diabetes Online Community.

A lot of my initial blog audience and DOC connections were from the United States, and I felt like I had to fit in with that. I don’t think I realised the value of my perspective as an Australian person with diabetes. I guess today, I’m proud to be an Australian diabetes blogger. I proudly publish my posts during the daytime here in Australia, even if that means that my friends in the US and UK are sitting down to dinner or heading to bed. I’m proud to be a part of the Oz Diabetes Online Community, even if it’s not as huge as DSMA or DCDE groups in the US.

What does the future hold for Type 1 Writes?

Hmmm…I hope I’ll be able to keep doing more of the same. Publishing great content, sharing my story with diabetes, being part of an inspiring community and hopefully reaching more people. I’d love to meet more DOC connections in real life, and attend diabetes conferences. If I could find a job or side income more closely aligned with my blog or my writing someday, that would be amazing too. 

One thing that won’t change, however, is that I will always continue to write what comes from the heart.

Guest Post: I Wish People Knew That Diabetes

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Hey everyone, Scruffy here.

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What’s that? You’ve never heard of me? What on earth does Frank talk about on this blog then?

Can you believe that my owner took off on holidays last week, and left me behind at Frank’s house? Sigh…

Frank’s been busy patting me, taking me for walks and feeding me scraps this week. I’m a bit upset that he doesn’t let me sleep inside at night like I do at home. Not nearly enough food here for my liking, either.

I’m a bit sick of watching Frank write on this blog, when he could be entertaining me instead. So, I thought I would lend him a hand today and make myself known. He doesn’t really deserve any favours from me, though…

Can you believe that I had to watch Frank tweeting about I Wish People Knew That Diabetes for the whole day last Wednesday? I don’t know what those humans are complaining about…I Wish People Knew That Diabetes means us dogs have it tough!

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I Wish People Knew That Diabetes means I have to watch Frank eat Tim Tams when he’s low. Well, I think he just says that to me so that I’ll leave him alone!

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I Wish People Knew That Diabetes makes Frank upset sometimes, and he doesn’t want to play with me.

I Wish People Knew That Diabetes means Frank has to get his insulin out of the fridge, when he could be getting food for me instead.

I Wish People Knew That Diabetes makes Frank pick me up when he’s upset, and I can’t run around the house and see what everyone else is up to!

I Wish People Knew That Diabetes means that Frank can’t wolf down his dinner like I do. He has to count carbs and give insulin first! Watching his delicious dinner plate for so long is torture!

Oh, and can you believe this – Frank just reminded me that if I’m going to be talking about I Wish People Knew That Diabetes, I need link to the official website at iwishpeopleknewthatdiabetes.org. I thought I was taking charge of this blog today!

To top it all off, they’re saying it’s going to rain again today.

It’s going to be a long day…

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How Do We Lessen the Burden of Glucose Monitoring?

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The yourSAY research findings issued last week revealed that many Australians felt burdened or tired of monitoring their blood glucose. I wrote more specifically about these findings here. Even though they didn’t necessarily represent my views alone, it was hard not to feel a little exposed when reading them. I expected so much from this research. By the time I reached the end of the report, I was left wondering what happens next.

I was curious to know if there were any discussions or solutions on the horizon to lessen the burden of glucose monitoring for Australians living with diabetes. I put that very question to both Abbott and Diabetes Australia, two of the major parties invested in both this research and in people with diabetes. Both kindly responded to my e-mails, which I will paraphrase below.

I think it’s fair to say that for both parties, research such as the yourSAY provides greater understanding of the needs and attitudes of people living with diabetes. I know that I encounter a great deal of diabetes unawareness myself, in day to day life. These organisations most likely employ some people who do not have diabetes themselves. Research would be crucial to both organisations in their work and what they hope to achieve.

Abbott’s objective in releasing the results was to initially highlight attitudes towards people’s glucose monitoring and current diabetes management. The yourSAY findings set the scene in the Australian market for glucose monitoring solutions to come. Obviously, Abbott are also launching the FreeStyle Libre in the Australian market soon, and I presume that these findings will be used to complement this launch.

Diabetes Australia uses the findings from research projects such as the yourSAY to build advocacy cases with all levels of Government, philanthropists, healthcare companies and other stakeholders. Diabetes Australia also advocates to the Federal Government about the need to increase access to new technology such as Continuous Glucose Monitoring, and to ensure that people who need these technologies can afford them.

I know that it’s still early days, and change does not happen overnight. I can’t say that I know what is involved in developing a new product or building an advocacy case, so it’s not fair for me to comment.

I would, however, like to see limits on the number of test strips subsidised through the NDSS removed. I would like to see diabetes technology encouraged by healthcare professionals, and made more accessible for those who wish to use it. I would like to see more support and resources for people in the public healthcare system – I know that I was weaned off of it once my diabetes management was deemed “satisfactory,” even though I could have benefitted from greater attention.

I’m happy this research is out there. I can only hope that it will create greater awareness, trigger discussions and conversations in the right circles, and create change going forward.

A Pitch For My Kitchen Rules

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Last week, I sat down and watched a full episode of My Kitchen Rules for the very first time. As much as I hate to admit it, it’s pretty easy to get hooked in.

Do I watch it because I’m inspired by the “home” cooking? Nope. Do I watch it because it shows genuine “reality?” Absolutely not. Rather, I love sitting in front of the telly and picking the show to pieces.

Every year, the show trots out the same cliched characters and stereotypes that have been done to death. The lovebirds, the villains, the couple with big egos, blah blah blah. Watching the contestants’ behaviour and dialogue is cringe-worthy. It comes across so forced and so unnatural. I watch the show and I think to myself, ‘who the hell talks like that!’

I love watching the manufactured drama unfold as the couples prepare meals for the competition in their homes. 

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I say manufactured, because it’s so obvious that it isn’t real. (And the gif, because I’ve been watching Downton Abbey all weekend). One night, the oven’s burning. The next night, one of the dinner guests is making nasty remarks about the food served up. Another night the team has a meltdown in the kitchen, magically pulls it together before the end of the episode and wins a perfect score. Oh, and did I mention that crying is a prerequisite to be on this show?

I really feel for those poor contestants who are forced to sit at the dinner table for what appears to be a good 10 or 12 hours. In an episode last week, the guests arrived for dinner at what looked like lunchtime, and by the time the final scores were issued, it was dark. I can only assume the crew take their time filming several takes and gathering lots of footage to ensure the most dramatic on-screen effect.

As I was sitting in the lounge room watching last week, I realised that diabetes would be the perfect character for the show. The producers would surely eat it up.

Imagine the back story. I could say that I’ve lived with diabetes for years, and that I was bullied because of it. I’m going on the show to prove that diabetes won’t hold me back. All reality contestants seem to have something to “prove” these days, right?

I could dramatically feign lows in the kitchen. I could stop to check my blood sugar, with the result dramatically revealed after a commercial break. I could have a meltdown over my diabetes right before the guests are about to arrive, and then miraculously pull it all back together in time to serve them dinner.

I could be the contestant with a big diabetes ego. I could criticise all of my competitor’s dishes for not being diabetes friendly. I could whinge about there being no nutritional information or carb counts on the menu. I could test my blood sugar at the dinner table and blame the food for causing my levels to spike. 

While My Kitchen Rules is hardly about the actual cooking, there’s no shortage of people who continue to watch it here in Australia. At a time where we are facing issues around sugar consumption, unhealthy diets and obesity, it’s a shame that shows like these aren’t doing more to inspire people to cook simple meals at home.

We will be discussing online and offline diabetes peer support during tonight’s OzDOC chat. Join in Tonight from 8.30pm AEST by following #OzDOC on Twitter.