Diagnosis

Gratitude.

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Today marks nine years of living with type 1 diabetes.

I might only be a dia-baby in the eyes of many of you, but to me nine years is pretty significant. It represents the majority of my adult life. As it becomes harder and harder to find things around me that pre-date my diabetes, it becomes harder for me to believe that a life once existed without it.

I don’t really know what to say today except that I am grateful. I’m grateful to be here. I’m grateful to be able to wake up, savour that first sip of coffee, watch the sky light up from my kitchen window, get dressed and go to work with ease.

I’m grateful to be living in an era of modern insulins, tools and technologies that give me a really good chance to be able to manage my diabetes well.

I’m grateful to live in a country where basic healthcare and diabetes supplies are relatively accessible and affordable. Thank you, Medicare and NDSS. I’m grateful to have a job and a roof over my head that allows me to pay for those things.

I’m grateful for the time and effort that diabetes has forced me to invest in myself. From curling up in front of blogs and books to spending nights scrutinising over blood sugar patterns, and just taking the time to listen to what my body is trying to tell me. I am a better person for it.

I’m grateful to have found the Diabetes Online Community a couple of years ago, which has today evolved into an amazing tribe of peer support around me. I’m grateful for the source of friendship, support and constant reminders that I am not alone in what I am dealing with.

I’m grateful for my family. Who tagged along to those initial clinic appointments, who have helped me out massively in the diabetes finance department, and who don’t ask me what my levels have been like.

More than anything, I am just so damn grateful to feel as ‘comfy’ as I do with my diabetes. That’s not to say that diabetes isn’t hard, or frustrating or filled with its moments. But yeah, I feel comfortable checking my blood sugar. Or wearing an insulin pump. Or talking about diabetes if it helps to explain something.

So this afternoon I’ll be grabbing a coffee and something nice to go with it, sitting in the sun and reflecting on the past nine years and just how far I’ve come.

Its About Time…To Raise Awareness of Diabetes!

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This week, I’ve been lending my voice to Diabetes Australia’s National Diabetes Week campaign that is calling on earlier detection of both types of diabetes. It is a campaign that I am really, really proud to support.

As a person living with diabetes, previous campaigns have been difficult to stomach. They’ve often focussed purely on the serious side to diabetes. While these campaigns understandably carry a political agenda for things like greater funding and improved outcomes for people with diabetes, they often lack one crucial element. Audience participation from people with diabetes.

People with diabetes want nothing more than to raise awareness of diabetes during diabetes week. What I love so much about this year’s ‘Its About Time’ campaign (and last year’s, for that matter), is that it hits the right balance of seriousness while also encouraging those of us living with diabetes to raise our voices and promote greater awareness of diabetes.

The type 2 campaign launched on Sunday, calling on everyone at risk to get their diabetes screenings, regular bloodwork and checkups with GPs. This is especially true for those over the age of 40, those who may have a family history of diabetes, those with a waist measurement of over 40 inches and many others. If you know someone who might be at risk, encourage them to get their diabetes screening! There’s also a free calculator that will help you to assess your diabetes risk here.

People can live with type 2 diabetes for up to seven years before it is diagnosed. The onset of symptoms are relatively slow compared to type 1, and many people still feel normal until the condition has progressed further and complications may have developed. Most of these complications would be preventable with earlier detection.

The type 1 campaign launched today, calling on everyone to know the four ‘Ts’ of type 1 diabetes – Tired, Toilet, Thirsty and Thinner. 1 in 5 people are still presenting to hospital in a life threatening state of Diabetic Ketoacidosis (DKA) before being diagnosed with type 1. DKA and hospital admissions could be prevented with earlier detection of the four Ts from both our peers and our healthcare professionals.

One common argument that I see in the diabetes community, and one that I’ve certainly been guilty of in the past, is that type 2 diabetes takes focus away from type 1.

I see this campaign as something that brings the whole diabetes community together.

I think we can all agree that no matter the type of diabetes we have, we would all benefit from earlier detection. However we were diagnosed, I think many of us would still be able to find something small that could have been done better through a greater awareness of those signs and symptoms.

I truly believe that Diabetes Australia are doing a fantastic job at championing people with diabetes. Perhaps I am slightly biased as I have been involved with them in the past, but I truly believe that this is a brilliant campaign.

Let’s shout diabetes awareness to the rooftops!

Fellow people with diabetes, this is our week!

The 4Ts of Type 1 Diabetes

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Happy National Diabetes Week! This year, it’s once again all about raising awareness of the signs and symptoms of both type 1 and type 2 diabetes. I know that I’ve been critical of diabetes campaigns in the past, but hit play and let me tell you why I think this a really good one.

(If you listen carefully, you might even be able to hear the whirl of the washing machine in the background…)

Perspectives on Pumping.

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I recently had a student reach out to me for insight on a research project titled ‘Positive and Negative Social Impacts of Insulin Pumping.’ I really, really loved these questions. I was never asked how diabetes made me feel after my diagnosis. I got a pump because I felt like it was my last chance to gain some control over my blood sugars. I never really thought about how a pump would make me feel. 

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Did you ever feel excluded or underestimated because of diabetes? Was this also impacted based on the treatment you use?

Being diagnosed with type 1 at the age of 17, I had lived all of my life to that point without diabetes. Naturally, I felt very conscious of ‘introducing’ and managing my new condition around others.

Diabetes also felt extremely isolating. I didn’t know a single other person with type 1. Management tasks like checking blood sugar levels and calculating insulin doses were largely invisible to those around me. It was difficult to lean on my loved ones for support, as I didn’t feel that they would be able to completely understand the complex nature of this condition.

To answer your question, I don’t think that these feelings would be any different with either pens or a pump. It’s the diabetes itself!

Did the insulin pump change your lifestyle or encourage you to start new habits? 

The insulin pump definitely motivated me to start counting carbohydrates, rather than guessing my insulin doses. I started paying more attention to my diabetes and learned how to better respond to many of the different factors that affected blood sugars. And, of course, it offered an element of convenience in my insulin dosing over needles. The variance in my blood sugars improved a lot within a few months of pump therapy.

I also found that the insulin pump produced more low blood sugars during exercise than injections ever did. Having rapid acting insulin as my basal, rather than a long acting insulin used with injections, made it easier to go low while I was on my feet at work or doing housework at home. Physical activity with a pump requires a lot more planning, which for me is a little discouraging if I feel like going for a spontaneous afternoon walk around the block.

Has diabetes inspired or motivated you to join different groups? Has it, generally speaking of social impacts, improved your life?

Absolutely! Although, I don’t think I would have been keen on meeting other people with diabetes in the initial years after my diagnosis.

I began using Twitter with more of a diabetes focus when I started my blog in 2015, which connected me to a vibrant online community of people with diabetes from all over the world. This community was so valuable to me, and eventually motivated me get out and meet other people with diabetes.

Diabetes has given me a lot of confidence in regards to being more open about my condition, and I’d like to think that this confidence has extended beyond just my diabetes. Peer support has definitely improved my mental wellbeing. Diabetes is such an isolating condition to live with, and having peers to talk to and laugh with are a constant reminder that I am not alone in this.

How flexible are you with the insulin pump?

The pump will give you more flexibility if you’re prepared to put the hard work in.

For me, the pump has offered me the most flexibility in being able to customise basal insulin to the time of day. For example, being able to deliver a higher rate of basal insulin in the early hours in the morning to combat what is known as dawn phenomenon – a surge of hormones that triggers the liver to dump additional glucose into the bloodstream.

But again, the pump is only as smart as the person pressing the buttons. In this example, I’ve had to make the commitment to monitoring my blood sugars, identifying trends and making adjustments to my basal rates accordingly.

Does the changing of the cannula take a lot of time and patience?

It was definitely a learning curve in the beginning. I had to make sure that I didn’t pick an overused spot on the stomach that could bruise or bleed, that the cannula didn’t kink on the way in, and that there weren’t any air bubbles in my pump line that could impair insulin delivery. Site changes did create a little anxiety in the beginning. If it wasn’t successful and I wasn’t getting my insulin, my blood sugar would go high pretty quickly and I could be in Diabetic Ketoacidosis within a few hours.

Today, it’s just another ‘chore’ that I have to stop and get around to doing every three days.

Any additional positive or negative impacts of the treatment on the social aspect?

I’m pretty neutral on this. The pump does make things more convenient in social settings and when I’m on the go. It’s worth noting that lots of people dislike needles, so the pump is a big help there. But there’s also a lot of maintenance you need to keep on top of and more consumables you need to keep handy, so it depends on how you look at it!

I feel it’s the nature of diabetes as a whole, rather than a particular insulin therapy, that may have an influence on social aspects of life. I feel its more important that people with diabetes receive adequate support to accept their condition and live well with diabetes – from their healthcare professionals, peers, loved ones and even mental health professionals.

How I Wish Mental Wellbeing Was Approached on Diagnosis

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Another week, and another column up over at Diabetes Daily. This week I’m reflecting on how I wish that mental wellbeing was approached on my diagnosis.

“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”

You can check out my full column over at Diabetes Daily right here.