Dealing with Diabetes

Insulin Gone Bad.

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I couldn’t help but notice the reading of 14.1. Is that high? My friend asked me from across the table as I was demonstrating my FreeStyle Libre.

Yeah, I obviously haven’t given enough insulin for the banana bread, I replied, pulling my pump out of my pocket and bolusing for another 30 grams of carbs ever so casually.

I had already bolused a very generous 60 grams of carbs for the slice of banana bread and iced coffee I had ordered at the local cafe, but I wasn’t overly surprised to see the upward trend arrow on my Libre.

My blood sugar was still skyrocketing by the time I arrived home an hour later, with my Libre clocking in at a lovely 17.4. I bolused for another 10g of carbs, bringing the total for my mid morning coffee catch up to an overly generous 100g of carbs. I was certain that all of this insulin was bound to kick in any minute now.

After another hour had passed and my Libre clocked in at 25, I had figured that banana bread was the devil. After a prick of the finger came in at 20.4, I ignored all insulin I had on board and gave a full 4 unit correction. I also set a temporary basal rate of 100% to help get things moving in the right direction.

After a bucketful of insulin, my blood sugars slowly but surely began moving in the right direction over the course of the afternoon.

When dinner time rolled around and I was back in range, I bolused for the 50 grams of carbs on my plate. I drank a glass of water. I stepped outside and turned the sprinklers on. I washed some strawberries that I planned on having post dinner. I drank yet another glass of water. I stepped outside again, and switched the reticulation off. After distracting myself for a good 20 minutes or so for the bolus to kick in, I finally tucked into my dinner with the hope of avoiding another blood sugar rollercoaster.

Fast forward to me in front of the television 2 hours later, and my blood sugar clocked in at 16.1 with an upward trend arrow on my Libre.

I scrolled back through my pump history, noting that my last prime was four and a half days ago. As I swapped out the infusion site, my brain began to cotton on to other moments of particularly difficult-to-manage post meal blood sugars in recent days.

The lone milky coffee that sent my blood sugar upwards of 10. The hot cross bun that I’d carefully pre bolused for, but landed me close to 20. Rising blood sugars, despite a long walk fuelled by 10g of chocolate beforehand. Even a pasta meal had been extremely difficult to manage.

As I connected all of these recent occurrences together, I eventually recalled another occurrence of skyrocketing levels when my insulin had spoiled 2 years ago.

My insulin had spoiled! There was my answer! 

So, maybe Banana bread wasn’t the devil after all.

Feeling Tired With Type 1 Diabetes

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The final stretch of last year was a pretty challenging time for me, physically.

I felt tired. All. The. Damn. Time.

I would often find myself crawling into bed at the end of the day, feeling utterly exhausted. I was no longer waking up to my 1am alarms, and my blood sugars definitely suffered for it. I would wake up after a solid eight hours of sleep feeling bleary eyed, wanting nothing more than to close my eyes and go back to sleep again.

I honestly could not find an explanation for the way that I was feeling. Although the management of my blood sugar levels had slipped a little since achieving a personal best hba1c in July, my ability to manage them was still far better than they had ever been in my pre-pumping era. My bloodwork from July was also really good, and I had seen my endo in August.

I probably should have made an appointment with my GP, but I honestly didn’t feel that he would have been very helpful to me.

I felt more burdened than I had felt in a long time. in fact, I’d go as far as to say I felt equally or more burdened than I did during my start on insulin pump therapy. These feelings affected my work, my attitude around others and my overall quality of life. Part of me was ready to accept that these symptoms were simply a tradeoff of living with a demanding chronic condition like diabetes.

Living with type 1 diabetes creates somewhat of a complex relationship with food. We need food to fuel our bodies, but at the same time food spikes our blood sugar levels – and we want to avoid out of range glucose levels at all costs.

What’s the best nutrition advice for a person with diabetes? From my experience, It depends on what you’re reading and who you’re talking to. While I absolutely love my diabetes community, the overwhelming messages that seep into my brain is to avoid this food group or cut back on that one that and stop the spikes from happening.

I don’t want to single out any particular way of eating, but diabetes has distorted my relationship with food without me even realising.

The average male needs to consume about 8,000 kilojoules of energy per day to fuel his body so that it can function properly and match energy expended through activity. I don’t think I was even coming close to that. Not to mention having an active job where I’m on my feet all day expending even more energy by the minute.

I honestly cannot ever recall being taught to eat to fuel my body and meet my daily energy needs – from healthcare professionals and diabetes websites alike. Or perhaps I wasn’t listening carefully enough.

The past month or so has been a bit of a learning curve for me. Let me just say that it is pretty challenging to eat 8,000 kilojoules of quality food every day, and I have slacked a little at keeping tabs on this at times.

Of course, as with anything you make a major change to in life, diabetes management also demands attention and there have been a few tweaks to basal rates. I’ll share more specifics in time. 

But I’m sitting here in the sunshine typing this today, feeling far better than I have in quite some time.

‘Instant Diabetes’ Jokes

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Am I supposed to get angry and explode with rage every time I hear an incorrect comment about diabetes?

Am I supposed to bring to a hault an incorrect comment about diabetes, and politely correct that comment with fact?

Or should I just stand there and listen to the umpteenth diabetes joke, having done both of the aforementioned more times than I can keep track of, and accept that I’m never going to be able to change other people’s pre-conceived perceptions of diabetes?

The latter is sounding like the more tempting of these options lately.

I’m not really a fan of seeing rage ensue over an inaccurate comment about type 1 diabetes. I don’t think anyone should be crucified for a mistake, unless of course they fail to see any sign of wrongdoing.

I knew absolutely nothing about diabetes in the first seventeen years of my life without it. I get it. When I first heard the words ‘diabetes’ in the Emergency Room, my whole body flooded with guilt as I thought about every bag of chips, plate of ice cream and can of soft drink that I enjoyed as a kid. 

I later learned that I had type 1 diabetes, an autoimmune condition whereby an unknown trigger caused the insulin producing cells in my body to begin attacking themselves. Type 2 diabetes, on the other hand, is a condition whereby the body becomes resistant to insulin over time and often has more definitive causes. These can include age, genetics, ethnicity and sometimes lifestyle choices.

I’ve lost track of how many times I have explained the concept of type 1 diabetes to some of the people around me. And hey, I don’t mind being asked about it. I sure as hell don’t mind explaining it.

But you would think that being around someone who manages type 1 diabetes all the time might help you to at least not make those jokes about ‘instant diabetes.’

Yet, these comments still ensue right in front of me during conversations about that mouth watering, sugar laden dessert that was served at the dinner table last night.

Or, on the other end of the spectrum, this.

This is where I throw my hands up in the air, and accept that life’s too short to let the ‘instant diabetes’ jokes bother me.

The triple chocolate Flake birthday cake I made a few weeks ago that is most definitely not a cause of diabetes!

Outside the Bubble.

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“Diabetes! Diabetes! This way!”

The lady behind the counter was shouting and gesturing wildly as I entered the rec centre for an evening on exercise and nutrition put together by my fellow Young Adult Diabetes Committee members.

The YADC came to life a year ago and has since grown into a vibrant community of young adults living with diabetes, who are predominantly type 1s. As I found myself explaining to someone in attendance that night, this group really came about to fulfil a need that was currently missing in the Perth community.

As I took a seat and the evening’s proceedings kicked off, I found myself mentally nodding as I heard concepts being explained by our guest speakers that I was all too familiar with.

I looked around the room, glancing at some of the other people with diabetes and their loved ones in attendance. I observed many of them listening attentively, taking in all of the information they were hearing or jotting it down in note form. My own two parents were sitting behind me, and I wondered how easy this information was for them to take in.

They know the concepts behind managing type 1 diabetes quite well. At home, I find myself talking a lot about some of the exciting developments I read about in the DOC, my advocacy activities and diabetes related travel.

However, I’ve always been very independent in the physical management of my condition. I don’t bother them with all the nitty gritty stuff, like trying to figure out the best time to bolus for a high fat high protein pub dinner when my blood sugar is x mmol.

The evening broke off into group sessions, where I found myself chatting with some of my fellow type 1s in the room. It was nice (but also saddening) to hear other experiences in public hospital diabetes care that mirrored mine, while there were also some inquisitive questions asked of the pumpers and CGM users.

I departed this event with a far greater insight from all of the different perspectives I had heard and observed in the room during the course of the evening, and all of the different motivations for attending.

During our committtee meetings, good ideas simply seem to pop among this very bright group of YADC members. I spend my spare time trawling social media, squealing with excitement over the latest device or venting my frustration over the latest coverage of diabetes in the media. I get to catch up with people in the industry and other diabetes bloggers when I’ve received opportunities to travel, who are people just like me.

This event, however, had finally brought me outside of the diabetes bubble that I so often find myself sitting in. I just need to figure out how I can spend some more time here.

My Story.

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I recently submitted this piece of writing to a diabetes publication in the hope that they might consider featuring it at some point. While I was sad (and surprised) that they weren’t able to accommodate it, I’m incredibly proud of it. You’ve probably seen bits and pieces of my story scattered through this blog, so today I invite you to take the journey with me in the comfort of one blog post. From the moment I first began developing symptoms of diabetes right through to today where I feel supported, loved and owing a whole heap of debt to my diabetes tribe all over the world!

***

I’m one of the privileged few who was diagnosed with type 1 diabetes a few weeks shy of my 18th birthday.

My first noticeable symptom was weight loss, both on the scales and in front of the mirror. I thought nothing of it. A few weeks later I found myself unable to concentrate on my uni assignments for three straight days, distracted by feelings of extreme lethargy and thirst.

Within an hour of going to work the following morning, I lacked the energy to stand on my own two feet and had to call it a day. I visited a GP, who told me I had a virus and sent me home on hot fluids and bed rest.

I spent the next three days in bed, something that I rarely ever do when I’m sick. My thirst was insatiable. My mouth was devoid of all it’s saliva, making solid foods very unappealing. When I woke up on the fourth day feeling nauseated and short of breath, my Dad drove me to hospital where I later learned I was in a state of Diabetic Ketoacidosis (DKA).

Initially, I did feel a brief sense of dread at the prospect of having diabetes forever. However after feeling so poorly for several weeks, I was simply relieved to have my energy back! I don’t remember actually processing my type 1 diagnosis all that much right away. I really just had to dive back into uni, work and turning 18!

I left hospital knowing how to inject insulin and check my blood sugar. My parents were a great support to me at home, and I had a wonderful diabetes educator who I saw at the hospital diabetes clinic.

While I count myself lucky that I went through adolescence without diabetes, being diagnosed as a young adult presented a unique set of challenges. Nobody knew that I had diabetes. I didn’t grow up with it, I didn’t go through school with it, and it wasn’t simply there for the world to see. I didn’t know life any other way.

I wasn’t able to experience diabetes camps or other youth-oriented activities that would have automatically connected me to other people with diabetes. Being diagnosed at an age where I was fairly independent in my management, I didn’t have a parent or caregiver to share this experience with me first hand.

Diabetes quickly became a very isolating thing to deal with. Diabetes didn’t feel normal. I felt awkward. Different. Moreso at a time while others my age were venturing out into the night partying and drinking like there was no tomorrow, while I was sitting at home after my 18th birthday party eating my way out of a low.

I was really conscious of my diabetes. I checked my blood sugar and injected insulin in private. There were times where I didn’t leave home prepared. I didn’t know how to talk about something that felt so unexplainable. It became easy to keep diabetes to myself, and assume that nobody else would understand.

Diabetes was extremely tough to manage, and in hindsight I was probably weaned away from diabetes education too early. I wasn’t very motivated or engaged in my management, and diabetes definitely produced a lot of emotion.

In 2015 I began writing my blog. Writing has always been my passion, and I knew that I had wanted to start a blog for quite some time. I didn’t think that there was much out there on the interwebs from people actualy living with diabetes, however I was quickly proven wrong!

I began using Twitter, where I found a lot of other people with diabetes openly sharing their experiences. I discovered a group called the Oz Diabetes Online Community (#OzDOC), where weekly diabetes themed chats took place on Tuesday nights. I’m also in a few closed groups on Facebook, and I can see how powerful they are in providing a safe space for other people with diabetes to seek peer support.

Online peer support eventually extended into the offline world. I’ve been lucky enough to receive invites to a few diabetes conferences and events, where I’ve been able to put faces to some of the folks I’ve met online. The feeling is so surreal!

Here in Perth, I’ve also been working with an amazing Young Adult Diabetes Committee. We meet monthly and put together events to fulfil some of the unmet needs of young adults living with diabetes. It’s really exciting to finally have somewhat of a diabetes community closer to home.

Diabetes can be an incredibly isolating condition to live with, and there really is something to be said about sharing our experiences with people like us and hearing the words ‘me too.’

The Diabetes Online Community, or DOC as the cool kids called it, was my very first form of connection to other people with diabetes. It helped me to gain a great deal of confidence in my own condition. Day or night, there’s a good chance that others will be around for support in this global community.

Immersing myself in diabetes blogs, books and websites, I also found a wealth of useful information that helped me to become more engaged in my management. I got back in touch with my diabetes educator, and eventually made the leap from multiple daily injections to insulin pumping in 2016.

Blogging, and wider diabetes advocacy, has since become my passion. I’m incredibly proud of my little corner of the internet, where I’ve documented so much of my journey over the past three years. It has made my world a lot smaller today, and for that I am extremely grateful.

In 2015, I never imagined a life where connection to other people with diabetes would contribute to my physical and mental wellbeing. Peer support has been one of the biggest game changers in my eight years of living with type 1 diabetes, and it’s the one thing that I hope to change for others walking in my shoes.