Diagnosis

Setting the Record Straight

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Diabetes campaigns here in Australia never cease to disappoint me. They always tend to focus on the negatives, such as the complications and the hard hitting statistics which instil fear. Our campaigns lack positivity, and don’t do those of us living with the condition a lot of justice.

In my humble opinion, a campaign for Diabetes Week is simple. One where we encourage people living with the condition to share their stories in order to help raise awareness. Diabetes UK always seems to do this very well, with positive, empowering campaigns that actually engage and involve people with diabetes.

Before I start getting depressed about the awful complication-themed Australian diabetes week next month, I thought I’d add my two cents worth to Diabetes UK’s fantastic campaign for Diabetes Week, Setting the Record Straight. Here goes…

1) A diagnosis does not mean that you’ll develop complications. I heard a lot about complications in the Australian media during the first year or so after my diagnosis. I remember feeling horrified about that possibility, and even writing myself off because of my diabetes in conversations. It took me a long time to realise that this was in fact, not true. 

I still remember a fantastic quote I found somewhere on the internet that went something like “you might feel like crap today, but complications can take years to develop.” It’s a great perspective and it always reminds me that it’s never too late.

2) Diabetes takes time to get right. A LOT of time. After I was first diagnosed, I remember talking to others in the context that I would eventually get it sorted. Once I had everything figured out, I wouldn’t need to test my BGLs so often and I wouldn’t be having so many hypos. Six years later, I’m still trying to get it right!

My diabetes educator reminded me recently that “even though we want to do as much as we can straight away, it takes time to get it right and you need to be patient.” Be kind to yourself.

3) You don’t have to turn your life upside down or give up everything! Magazines are full of ways to change your life and feel better overnight and blah blah blah. Doctors talk as though change can happen with a wave of the magic wand. It’s completely unrealistic. I’ve made a lot of small, gradual changes to my diet and my routine since I was diagnosed. But I haven’t compromised on the things I love. I don’t do dedicated exercise, because I don’t enjoy it. I still eat chocolate. I still drink lots of coffee. I don’t peel the skin off my takeaway chicken. I still enjoy myself at Christmas time. 

A colleague recently told me that “it’s easier said than done.” While I do agree, I reminded her that it doesn’t mean that you have to be unhappy.

4) Finally, I’m loving the Faces of Diabetes campaign that’s going round on social media. Because there are actual human beings behind the condition, and it’s important to keep that in mind when advocating. You can get your picture here.

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Happy Diabetes Week to those of you in the UK! You can find out more at diabetes.org.uk and by following #DiabetesWeek on social media.

Six Mother’s Days Ago…

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On this day, exactly six Mother’s Days ago, I was making one hell of a racket in the kitchen. Mum walked into the kitchen in the early hours of the morning, to the sight of me making Orange Juice Granitas with the Snow Cone Machine. I had woken her up, and she was angry.

“The doctor told you to have hot drinks!” She yelled at me, referring to what we believed at the time to be a virus.

Little did I know that when I woke up in a few hours time, I would be taken to hospital. Little did I know that in a few short hours, I would be diagnosed with diabetes. A condition that would change my life forever, yet a condition that would shape the person I am today.

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When I think about six years of life with diabetes today, it’s hard to believe that it’s only been six years. In some ways, it feels like it’s been a lot longer than that. I can hardly remember what life was like without the finger pricks, the insulin injections, the 2am alarms and the corrections today.

Yet every time I recall this series of events, it feels like it happened only yesterday.

Nothing else in my life has ever demanded more time and attention. Not a day goes by that I don’t worry about whether I am doing enough to stay on top of my long term health. Despite my family’s best efforts to praise me, and to tell me that I shouldn’t feel this way, diabetes always weighs on my conscience. Nothing else in my life has ever made me feel so guilty.

At the same time, I do feel proud of myself. Everything I have accomplished in the last six years sounds amazing, simply for the fact that I have done it with diabetes. 

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I’m grateful that I can still live a relatively normal life. I can’t recall anything that I haven’t been able to do because of diabetes. I’m so lucky to live in a country where I have access to everything I need to stay healthy.

Not a year has gone by that I have not been reminded of my diaversary on the 9th of May. But I have never really celebrated it. And after a year and a half in the diabetes community, I’ve been thinking long and hard about what I should do to mark this day.

While my diabetes might have overshadowed Mothers Day all those years ago, today I realise I have two good reasons to celebrate.

Happy Mothers Day to the Mother who continues to make sure that I eat and that I wear my Medic Alert bracelet (with little success).

And cheers to six years of life with diabetes. Toasted yesterday with Lasagne, Wine, Cheesecake, Chocolates, Coffee, and hopefully some Cannoli later this week.

I can’t wait to see what year seven will bring.

Sidenote: Happy Diaversary to Bec at Sweet and Sour Diabetes. You beat me by four days!

The Other Side of the Fence

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It’s funny the things that spring to mind all these years later. Like my very first conversation about diabetes, that happened before I even knew what diabetes was.

Me, Dave and Matt were walking back to school after swimming class on a hot Summer afternoon. Swimming during Phys Ed periods were such a waste of time. We’d have to walk down to the pool, change into our bathers, jump into the pool for five seconds, get dressed and walk back to school in the space of 50 minutes. Not to mention how much I hated Phys Ed…

I must have been in Year 9 at the time. Possibly Year 10. I was half dazed, and half listening to Dave and Matt’s conversation as we slowly approached the school gates that day. Dave was a good friend, but I didn’t know Matt too well at the time. Then all of a sudden, Dave began talking to Matt about his diabetes. I quickly perked up out of my daze, shocked. I cut Dave off.

“Really? You have diabetes?” I asked Matt.

“For most of my life,” he replied.

I never would have guessed it. Not in a million years. Matt was so tall. And so athletic.

I don’t ever remember asking him about much about it throughout high school. I saw the miniature tubes that were attached to his stomach, and I just assumed that he had a little device that managed it for him. The device I today know to be an insulin pump. I heard him try to excuse himself from Maths class to get some sugar, although I’m certain sometimes it was just an excuse to get out of class. I never thought too much about the why.

Never in a million years did I imagine what he had to go through in order to manage his condition.

Never in a million years did I imagine that this is what I would be going through only a few years later, in order to manage my condition.

Those 17 years before I was diagnosed have given me a unique gift. They allow me to see diabetes from both sides of the fence.

There’s the side of the fence where I sit today. The side that I climbed into at age 17, where diabetes lives and breathes each and every day.

Then there’s the side of the fence where I played as a child, innocent and happy and free. The side where I didn’t know anything about diabetes. The side of the fence that was so high that I could never see anything that went in hand with managing diabetes.

It’s the side of the fence that I try to remember well when others who care about me ask about my life on this side of the fence.

It’s the side of the fence I hope I will be able to jump back into when diabetes is cured someday.

Hospital Memories

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On what would be my last morning in hospital after being diagnosed with diabetes, part of me couldn’t wait to go home. Even though I’d only been there for 5 days, it felt like an ordeal that had dragged on for weeks and weeks. The problem was, I could barely remember what home actually felt like. I could barely remember my life beyond those long corridors buzzing with doctors, nurses, visitors and patients at all hours of the day. Life beyond the hospital cafeteria, auxiliary shop, vending machines and coffee carts. That a world actually existed beyond that campus filled with traffic, cranes, helicopters and portable fences.

I had forgotten what life was like without having a nurse walking in every hour to check my blood sugar levels. Without having the trolley come past at breakfast, lunch and dinner time to take our orders. Having the doctors come past every morning to do their rounds. Having visitors come to see me every day. Being able to stay in pyjamas all day. Being able to sit in bed at 3pm and read the magazines people had brought me. Sneaking downstairs to explore those long corridors once the nurses disappeared. Being delivered a white-bread ham and cheese sandwich at bedtime, just in case I went hypo through the night. Hearing old Mr. Giglia across from me coughing, groaning and spluttering every 5 minutes. And laughing at some of those difficult patients I could hear from across the hallway!

In the short 5 days that I was there, I had formed a strange attachment to my hospital surroundings that had began to feel somewhat like home. Part of me felt quite comfortable sitting in that hospital bed at 9.30am on that Thursday morning watching Bones. That part of me didn’t quite feel ready to step outside into that cold, cloudy May morning and return to everyday life. Which for me, would be a new life. A life with type 1 diabetes.

When I was told I could go home, I wasn’t excited. I was hesitant. Uncertain. Nervous and scared at the same time. All of those medical ‘elves’ were about to fade into thin air and I would be left to deal with this diabetes thing all on my own. They wouldn’t let me wait for Mum to come, they were ready to force me into a wheelchair and send me to the outpatient lounge. They didn’t even leave me with enough supplies to see the rest of the day out.

As I sat there at the bus stop on that blustery, grey May morning waiting for my ride home, I didn’t know what the future would hold. I only wish I could go and sit next to that innocent, nervous 17 year old boy and tell him that everything was going to be okay.

Happy 5 Years (With Diabetes)

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The first week of May holds a lot of significance for me. It marks five 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.

And the random photo? In July 2012 I climbed the Sydney Harbour Bridge with type 1 diabetes. It was one of the best experiences of my life and it goes to show that diabetes hasn’t stopped me from living a normal life.