My Story.

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!

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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.

A Letter to My Newly Diagnosed Self

Dear Frank,

If you’re reading this, then I can only assume that you’re coming to terms with a new diabetes diagnosis.

I know that right now, you’re probably just happy to be feeling well again. You’re reluctant to show any visible signs of your condition, convinced that diabetes hasn’t changed you. But it has.

Diabetes does make you different, and that’s not necessarily a bad thing. The sooner you come to accept this, the easier it will be for you to manage both physically and mentally. Speaking of, did I mention just how much of a physical and mental effort diabetes can be? Don’t forget to give yourself some credit for this when you’re having a tough day.

This is your baby. The decisions you make around managing your diabetes are yours and yours alone. Don’t ever feel guilty for them. How much you decide to involve others in your diabetes and management decisions is up to you. That being said, don’t be afraid to lean on those around you. They will more than likely surprise you. You will feel far less isolated and much better supported.

This is about you, and you alone. People you speak with will want to jump in and give you their two cents worth. Ignore it. What your great aunt’s-brother’s-second cousin did to manage their diabetes certainly won’t hold any relevance to you. You’ll likely look at other people with diabetes and try to draw comparisons to what they’re doing or how they’re managing. It’s not worth it. Everyone is different. You’re on your own unique journey, and the way in which you manage your diabetes is completely up to you.

Don’t be afraid of the internet. You’ll find endless amounts of practical information here that you won’t necessarily receive from your doctor. Best of all, the majority of it comes from the community, for the community.

The internet is also a great place for peer support. There are plenty of friendly folk from all over the world online who are in, or have been in your shoes. They are accessible day and night. Best of all, you’ll get to experience this sense of community that will help you not to feel so isolated or alone in this.

I know that connecting to other people with diabetes in person is probably the last thing that you want to do right now, but let me tell you that it is just so worth it. There is nothing more uplifting than having a tribe of people who you can turn to when diabetes doesn’t play nicely. Or hearing the words “me too.”

Speak up in front of your healthcare professionals. Your diabetes team are busy people, and they will likely be pressed for time. Make it clear what you want from them. Use them to get what you need to live the best life you can. If they won’t support you, find a new team that will.

Everything and anything affects diabetes. Food. Activity levels. Stress. Hormones. Routine. Even sleep! It’s impossible to achieve perfection. You can have days where you feel you’ve done everything by the book, where you’ve done exactly the same thing you did yesterday, and still receive a completely wild result. Don’t beat yourself up over it. You can only do the best you can, while trying to live your life. Diabetes is 100% something that you fit into your life, and not the other way around.

You will have bad days. You will slip up. You will get burned out. You will go through a rollercoaster of emotions. I’d be surprised if you didn’t! It’s part and parcel of living with the condition, day in and day out. But you will get over it. You will come out the other end stronger, and more resilient.

Your biggest assets in the long term management of this condition are time and experience. With time and experience, you learn. You are always learning!

Diabetes does indeed make you different, but I can honestly say that it won’t stop you from living your life and achieving what you’d like to achieve.

With every passing day, you will be a little wiser and better equipped to live with this condition.

 

 

 

 

 

 

 

 

 

Diabetes Daily are running a series of ‘dear diagnosis’ letters during November. If you have your own letter that you would like to share, e-mail editor@diabetesdaily.com.

From Uni Procrastination, to a Type 1 Diabetes Diagnosis

Monday, May 3 2010

It was the first week of May 2010. A warm May, from memory. My head was buried in uni assignments and a part time job, with my 18th birthday looming just a few weeks away. 

In an attempt to make some kind of headway with those assignments, I decided to skip uni for a few days. I was never the kind of person who could smash out a 2,000 word paper the night before it was due. There were at least three or four separate papers I had to write, each in need of ten credible journal references. This meant hours and hours of reading through painfully long and boring PDF documents. I needed all the time I could give myself, because I knew I would be working later in the week.

Being left to my own devices in an empty house was a recipe for procrastination. Over the course of three days there were many Facebook sessions, browsing breaks, and heading to the kitchen for a drink. In fact, the latter seemed to be happening more often than I was normally inclined. A glass of soft drink was over no sooner than I had poured the glass. Even plain water, which I found unpalatable, was tempting. 

Try as I might, I just couldn’t seem to find the energy to focus on those papers I had to write. I felt rather tired and lousy. Rightfully so, given I had just wasted away three whole days doing next to nothing.

Thursday, May 6 2010

I really didn’t want to get out of bed. My mouth was ever so dry, and I felt really lethargic. Feeling the shame of a very unproductive three days, I forced myself up out of bed. Thinking I had to snap out of my rut, I prepared a super healthy lunch to take to work. A salad sandwich, Ski yoghurt and carrot sticks.

The energy to remain standing on my own two feet at work that day was lacking. I might have lasted half an hour, at best, before I gave in and went home.

I wasn’t even sure I’d be able to drive myself home. Although tempted to call Mum and Dad, I knew they were out and didn’t want to interrupt their errand. It took every last ounce of my energy to drive myself back home. No sooner than I had walked through the door, I collapsed onto the couch and buried myself under the comfort of a blanket.

When my parents arrived home, I told them that I wanted to go see a doctor. Mum relayed to me that the earliest available appointment to see our family doctor was Saturday, and I knew I simply couldn’t wait until then. 

We visited a medical centre later that morning. After explaining my symptoms of exhaustion and excessive thirst, the doctor sent me home requesting bed rest and hot fluids for three days.

I spent the next three days in bed, which speaks volumes for me. Never in my life had I stayed in bed when I was unwell. Sick days were often spent eating Mum’s chicken noodle soup, reading a book or watching the midday movie surrounded by tissues. 

My mouth was now stripped of all of it’s saliva. I was struggling to find any food even remotely appealing, much to Mum’s distress (eat something!). I questioned my diet and lack of interest in physical activity, truly under the belief that these symptoms were of my own doing.

Sunday, May 9 2010

It was very early on a Sunday morning. Mothers Day, to be exact. I was restless, and had gravitated from my now uncomfortable bed to the living room couch. Ice cold, refreshing drinks were now a craving. These cravings were becoming insatiable, and more frequent. I was struggling to pass the mere minutes in between refreshing glasses of ice cold Orange Juice on the rocks.

In the kitchen, I was frantically trying to get ice cubes out of the tray and into the Snow Cone machine. I was onto my third or fourth orange juice granita when my rumblings in the kitchen got Mum out of bed.

“What are you doing? The doctor told you to have hot drinks!”

My heart rate was becoming more rapid by the minute, and I was going to the toilet at least once every hour. A bout of nausea finally made me feel slightly better, and got me settled that night.

When I woke up a few hours later, I was panting. My heart rate was extremely rapid and I felt breathless. I was still extremely thirsty and exhausted, and going to the toilet every hour. I told Mum and Dad how I felt, just waiting for them to suggest what I was thinking.

No sooner than Dad had started talking about going to a doctor, I shot it down. I knew that it would be pointless, and that I couldn’t hold out for that long. My mind was made up. I had to go to hospital.

The car ride was a blur. I was panting the whole time, eagerly staring out the window the way Scruffy does on the way to the park. I had no idea what was wrong with me, or if I would ever have my salivary glands restored. Honestly, then and there, I wasn’t even sure that I would survive this.

Soon enough, I would learn that my pancreas had stopped producing insulin, the hormone that regulates blood sugar levels, through no fault of my own. I would become dependent on insulin injections and frequent blood glucose monitoring with finger sticks for the rest of my life.

I was diagnosed with a condition called type 1 diabetes, the minute I walked through the emergency room door.

It’s National Diabetes Week here in Australia, and the reality is that many individuals and healthcare professionals aren’t aware of the symptoms of type 1 diabetes. Case in point. Had these symptoms been properly diagnosed when I first visited the doctor, my hospital admission may well have been avoided. I’m sharing this story today, with the hope that it might stop another person from going through the same ordeal as me.