Diabetes Musings

Relentlessness.

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There are days where I find myself exhaling loudly out of exhaustion. My alarm wakes me for work at 6.30am, while I want nothing more than to close my eyes and go back to sleep. I find myself unable to muster any enthusiasm for the new day ahead of me, nor for the people around me. I find myself walking around with a long face, and an expression that will put a damper on everything and everyone around me. There are days where I feel like coffee, toast and swear words are the bane of my existence. Then, there’s the inevitable feeling of limping toward the finish line on a Friday afternoon.

Over the years, I’ve told myself that I was burned out. Or that I wasn’t eating the right kinds of foods. That I was overworked, and trying to juggle too many different things. I wondered if it was the exhausting nature of rollercoaster blood glucose levels. Or the mixed bag of emotions that came from dealing with an unpredictable condition that was downright isolating.

Time has gone by, however, and I think it’s safe to say that I’ve addressed each of these issues to the best of my ability. The variability in my glucose levels are far less significant than they once were. I am more connected, supported and engaged in my management. I have a far better understanding of a condition that even at the best of times makes no sense. I am far more conscious of taking time out for myself and not burning out.

But I’d be lying if I said that those feelings don’t linger, like flames from a fire that simply will not go out. There’s only one rational explanation that I keep coming back to.

Diabetes.

Diabetes is relentless. The physical and mental effort required to keep those flames at bay is huge. Throw in a full time job, freelance writing, friends, family and time out for myself, all while working towards financial independence, a career and other life goals, and it’s no surprise that at times I feel like I’m only further fanning those flames.

Diabetes is no easy feat.

When I look on in envy at the person with a spring in their step while I’m limping it toward the finish line of a Friday afternoon after a challenging week, I remind myself that most people around me don’t have to deal with the relentless diabetes demands that I do.

It Feels Like…

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It feels like not setting your 1am alarm that could be the difference between waking with a blood sugar level of 5 or 10.

It feels like choosing to shell out money on ham and cheese croissants, tuna sushi, Kit Kat Chunky bars and Jesters chips instead of bringing your lunch from home.

It feels like failing to wash your grubby hands before the prick of a finger, knowing that the number will be a shit one regardless.

It feels like exhaling loudly, and sighing out of exhaustion from the mundane diabetes tasks that make life feel that much harder.

It feels like telling your meter to eff off when it screams ‘low batteries’ at you.

It feels like telling your meter to eff off a little louder when it still screams ‘low batteries’ at you.

It feels like failure after discovering your third infusion site this week that hasn’t lasted it’s full three day life.

It feels like telling your insulin pump to shut the hell up when it begins blaring that there are less than 10 units of insulin left in the cartridge at the dinner table.

It feels like trying to manually poke your finger with a lancet after you’ve left your lancing device at home.

It feels like not being bothered to weigh and carb count your dinner tonight, instead opting for a good old fashioned guesstimate dose of insulin.

It feels like checking your blood sugar, and not really caring that your levels are higher than what you’d normally accept.

It feels like anger when your new FreeStyle Libre sensor starts bleeding horribly after application, when you had put it on hoping for somewhat of a break.

It feels like frantically power walking home with a plummeting blood sugar, because you forgot to bring your glucose tablets with you on your walk.

It feels like crawling out of bed with a heavy head, still feeling exhausted after a solid 10 hours rest.

It feels like silent pleas for the coffee machine not to get choked up, because you simply can’t handle yet another failure this early in the morning.

It feels like…a bout of diabetes burnout.

(and a whole heap of bad luck).

400 (+1)

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Today, I’m thinking about what I’m most thankful for as someone living with diabetes.

The inspiration for this vlog comes from Diabetes Research WA, who are holding their first ever ‘Thank You Week,’ and you can find out what it’s all about here.

This also marks post number 400 (+1) here at Type 1 Writes, and I’d just like to say a big ‘thank you’ for sharing this journey with me!

Why I Choose Not to Share My A1C Online

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My latest column for Diabetes Daily is up, and this time I’m respectfully talking about why I’m not a fan of seeing hba1cs in bios and Facebook statuses. 

“A couple of weeks ago, I saw a photo posted into a closed diabetes Facebook group. This photo showed an individual’s pathology report, displaying their latest A1C result. It was an amazing, amazing result. I tip my hat. People were expressing their amazement in the comments. The moderator kindly congratulated the individual, before expressing that everyone is different and that onlookers shouldn’t compare.

I thought that the moderator’s response was impeccable. More so, because it reminded me of why I am reluctant to post my A1c result online.”

You can read the full column over at Diabetes Daily right here.

A Smaller World

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When I started this blog two and a half years ago, I had no connection to diabetes in my own life. I didn’t think that there was anything out there on the interwebs about diabetes, besides from the medical jargon. Quite honestly, I was a completely different person.

I started this blog as more of a creative outlet, rather than a diabetes one. I had always liked the idea of a blog. A fresh post, with the date stamped right underneath the title. That little archive on the sidebar, with posts categorised by years and months to look back on. Words, sentences, paragraphs and comments felt so much more meaningful than some of the stuff being shared on social media. I loved the idea of checking in regularly to this digital diary, of sorts. One thing I really despised was seeing blogs that had been abandoned after a handful of posts.

When I first began writing here, I couldn’t really tell you why. I didn’t know the answer to that question myself. I didn’t really imagine that I would be talking to other people with diabetes, or even to myself. Or that I might be using this as my own soapbox. 

Blogging, along with social media, was my very first glimpse into the lives of other people with diabetes. It was a way for me to connect to others who were going through the same thing that I was. I was very heavily invested in the beginning, and blogging was probably a way of filling that missing peer support in my own life.

Today, I am better supported. I feel more empowered to ensure that my diabetes healthcare professionals are working for me and meeting my needs. I’ve been an invited guest at various diabetes conferences, where I’ve been lucky enough to put faces to other diabetes bloggers. There’s also the YAC legends, who are a great bunch of young adults who put together events for the diabetes community here in Perth.

Diabetes has crept into most of my online life. While I genuinely do cherish my d-community, during times of burnout it’s hard not to feel like it’s always there. I can’t leave it at work when I go home. When I go to sleep at night, there’s people on the other side of the world who are just getting their day started. I do feel twinges of guilt when I haven’t checked in here as often as I’d like. It’s taken time for me to learn to set boundaries around emails and social media notifications, and to put myself first.

Despite those downsides, there’s something that keeps pulling me back towards blogging and this amazing community.

Connection. There’s been a resounding theme of connection throughout this amazing journey. I’ve met so many amazing people, both online and in person, some of whom I am lucky enough to call friends.

The outcome of these connections is a happier Frank, who is more confident to live with and manage his diabetes to the best of his ability.

I guess that’s my reason why I continue to blog today. As crappy as this condition is, I am extremely passionate about the topic of diabetes. I genuinely do enjoy writing here. I’ve documented so much of my journey here, and I’m incredibly proud of this little corner of the internet. I still feel that I have a unique story to tell.

In 2015, I never imagined a life where connection to other people with diabetes would contribute to my physical and mental wellbeing.

Diabetes blogging has made my world a lot smaller today, and for that I am extremely grateful.