Diabetes

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.

Memories of Nurse Pina from Hospital

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I woke up in hospital. It was the morning of Monday, the tenth of May 2010. The day after I was diagnosed. The curtains were still drawn, but the room was glowing from the sunshine that was seeping in through the edges. I could hear the sound of morning rumblings coming from the open door to the left of my bed. The rumblings of moving breakfast carts, chatting nurses and ringing phones. Looking to my right, there must have been at least four, maybe six other beds in here.

The past day had been a complete blur. I remembered puffing and panting when I woke up yesterday morning. I remembered going to hospital. I remembered being told I had diabetes, and my heart sinking of guilt and self regret. And I remember Mum and Dad saying goodnight when the day was finally over. Those momentary lapses aside, I had spend the better part of yesterday asleep.

There were a lot of voices and discussions going on in the background yesterday, none of which I really had the energy to pay attention to. There were a lot of doctors and nurses that buzzed around throughout the day, and I think Mum and Dad did a lot of the talking for me. But this morning, I was feeling much better. My exhaustion was gone. My saliva and appetite was back. And I finally had the energy to get up and speak for myself. And Pina was the first person in that hospital that I could actually talk to.

Pina was so friendly as she came over and introduced herself. She thought I looked familiar, and we eventually began talking about where we might know each other from. As it turned out, we were both from Italian families. We both went to the same high school. We even lived in the same suburb. I used to love staring at lightposts, powerpoles and street signs as a kid, and she lived on a street that I could forever remember passing in the car. One of my favourite parks as a child also happened to be right behind Pina’s street.

The morning wore on, and there was some debate between Pina and her colleague over who would go to morning tea first. “You go first.” “No, you go first.” “I really don’t mind waiting, you go first.” You get the gist. By lunchtime, I was ready to be moved out of the high care ward. Pina followed me as I was wheeled to my new room. She kindly updated the nurse in my new ward, before saying goodbye. I thanked her for all her help, and she told me I was welcome to come back if I needed anything else during my stay. And that was the last time I saw her.

Would Pina be like this in front of every patient? I’d like to think so. Was I getting special treatment? Perhaps. I think in my case, it was just a refreshing change for Pina to have a young patient in that ward who made such a quick recovery. And for me, it was nice to meet a health care professional with such enthusiasm and dedication for her job, that I still remember to this very day.

Just Another “Human” of Diabetes

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I was recently invited to guest blog for AkibaH’s Humans of Diabetes campaign.

I’ve written before about how diabetes campaigns here in Australia often overlook people already living with diabetes. One of the things I’ve always tried to convey through this blog is that diabetes hasn’t ever stopped me from living a relatively normal life. And Humans of Diabetes puts faces, personalities and positive messages towards this disease, something that we definitely need to see more of in the media going forward. I love everything that this campaign stands for, and it was a really easy decision for me to participate.

Check out the post I’ve written today over on AkibaH’s blog, where you can find out more about me, my connection to diabetes and my motivations for blogging:

https://glucase.wordpress.com/2015/09/16/frank-diabetes-online/

AkibaH have created the world’s first smartphone case glucose meter, which will “arm people with the foresight to know how their everyday decisions impact their health.” There’s also a great visual of the smartphone case glucose meter at akibah.com. Special thanks to Molly for inviting me to contribute!

Disclaimer: I did not receive any compensation for writing this post, and I willingly chose to participate in the Humans of Diabetes blog series.

Lantus Adjustment Struggles

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It was the night of Easter Monday four years ago. The very first Easter after my diagnosis. My chocolate haul was proudly spread across my desk, a remarkable feat considering how old I was getting. The fridge at home was full of leftover food and deserts from our family gatherings over the weekend. I’d been pigging out over the past few days and eating more than normal. We were getting new floor coverings in my bedroom tomorrow, and I was sleeping in the spare bed in our games room.

My blood sugar level was somewhere around the 14 or 15 mark before bed. I gave myself three units of correction, knowing that one unit of insulin would bring my BGLs down by 3mmol/L. I tossed and turned, and before I knew it another hour had passed. I tested again, and my BGL hadn’t budged below that 15 mark. I was frustrated, and made an impatience-driven decision to give another 3 units of insulin. I finally drifted off to sleep, and woke up again at around 2am. I tested again. My BGLs had barely budged, and I gave another 3 units of insulin. The same thing happened at 4am. And again at 7am.

I was so angry that my blood sugar levels had been that high for the whole night. I was so frustrated that despite my best efforts, I couldn’t get my blood sugar levels to budge.

Ever since that night, I’ve known that my Lantus dose needs to be adjusted to match the overall amount of food that I eat in a day. Lantus is my long acting, or basal insulin dose that I take once a day to keep my BGLs regulated. On days where I eat more than normal, I know that I need more Lantus in order to keep my BGLs stable through the night. If I’m eating out at a restaurant, pigging out on party food or going crazy at Christmas time, I generally dial up my Lantus dose.

Doctors and other people I talk to have struggled to understand this concept over the years. Most have tried to talk me into giving rapid acting correction and waiting the full four hours for my BGLs to drop. It doesn’t work. That Easter Monday night four years ago was evidence that it doesn’t work. And up until now, I’ve been lost for the words to explain this concept to them.

Multiple Daily Injections are hard. It takes so much fine tuning to get right. There are so many variables that change every day such as food intake and physical activity, which impact on my BGLs and insulin requirements. I was really pleased to hear that my #DOC friend Ally at Very Light No Sugar understood the Lantus adjustment struggle. She offered me a really good analogy to help explain this concept. Lantus, or long acting insulin is like a mitten. And we fine tune this mitten with rapid acting insulin to make it fit like a glove.

At the end of the day, I’m not telling you what to do. I’m just telling you what works for me. Because it’s not anyone else’s diabetes but mine. But I really could use some advice on dealing with Lantus dose adjustments if you’ve ever experienced anything similar. Just putting it out there.

The Day My Insulin Ran Out

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I have two rapid acting insulin pens that I use. The first one sits on my desk at home, beside my blood glucose meter and my phone. I use it with my breakfast, my dinner, my snacks that I shouldn’t be having and for any corrections inbetween. The second one normally accompanies me on my travels. If I’m going to work, it usually sits in my satchel amongst my other clutter. If I’m going out, it’s normally stashed in my jeans or jacket pocket. I use the travel pen less than the home pen, but it probably cops the bigger-than-normal insulin doses from eating out and going overboard at parties.

Every time my home pen runs out, I’ll replace it with my travel pen. And I’ll replace my travel pen with a brand new pen. I swap them so that my insulin pen will always run out at home, where I have a spare stash of insulin sitting in the fridge, rather than on my travels. I know it sounds like a confusing system, but it works for me.

Ever since I returned home from my holidays in July, I’ve only been using the one pen for both home and travel. I’ve had to remember to grab my insulin pen in the morning to take to work, rather than it just already being in my bag. I’ve had to go searching for my insulin pen in my bag or in my jeans when I get home, rather than it already just being on my desk. In all of these weeks, did it ever occur to me that I was making life harder for myself? In all of these weeks, did it ever occur to me that I could just re-employ that second pen? Nope. Or maybe I just couldn’t be bothered doing it.

Last Tuesday night, I noticed that my insulin pen was nearly empty. Too lazy to replace the cartridge then and there, I told myself I’d deal with it tomorrow morning. And I didn’t give it another thought. That was, until after I’d eaten my lunch the following day at work. I was in the locker room, ready to dial up the pen, when I noticed once again that the cartridge was almost empty. My stomach sank. I hoped that there would be enough there to cover my lunch. Even more stupidly, I primed the pen without even thinking about what I was doing. I dialled up my dose of 5 units, stuck it in and pushed. It was cut short. I had managed only 1.5 units of the 5 that I needed.

Thankfully, I’d only had a Burgen bread sandwich and a Muesli bar for lunch. I only had an hour left until knock off time at 3pm. And I live very close to work. Under any other curcumstances, I would have headed home immediately (okay, I probably should have headed home immediately). But under those circumstances, I thought I would be okay to last out the rest of the day. I hadn’t eaten anything ridiculous. And I was just over an hour away from getting my insulin.

My mind was preoccupied for much of my last hour at work. I left at 3pm on the dot, bolted through the door at home and headed straight to the fridge to grab a spare insulin cartridge. It was the first time in five years that anything like this had ever happened. And quite honestly, I was disappointed in myself.

It didn’t take me long to get that second insulin pen out of retirement and back into the workforce at Frank’s diabetes. And I know that I’ll never let it happen again.