Getting All Emotional…

It’s day 4 of the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers get a variety of perspectives on each topic. Here is today’s prompt:

Today let’s revisit a prompt from 2014 – May is Mental Health Month so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

This is such a tough one to put into words, and I apologise if my thoughts are a bit scattered today.

If history is anything to go by, I tend to get emotional when diabetes doesn’t go right.

I remember times where I would go low for the third time in a day, and urgh. Oh my God. I would close the door to my room, and smash my fists into the wall until they hurt. I would rub my eyes in frustration, and bury my face in my hands.

I wasn’t very good at diabetes for the first couple of years. I was blindly plodding along, making wild guesses and accepting exhausting swings. I was isolated. I didn’t talk about diabetes with my family and friends. I lost touch with my healthcare team. I wasn’t online. I wasn’t engaged in diabetes, or peer support.

So yeah, when diabetes got tough, it definitely produced a lot of emotion.

When I started out on insulin pump therapy a year ago, I felt this enormous pressure to get things right. I felt like it was my last chance to get my diabetes into some sort of marching order.

But I didn’t get things right straight away. There were site failures, frustration around setting basal rates, high blood sugar levels, burnout and disappointment in my first hba1c result post pump. It was naturally, a huge learning curve. Those emotional moments repeated themselves.

Then there are simply the times where life feels overwhelming and exhausting. And then, hey, there’s my child diabetes that’s still screaming for my attention.

So, how do I cope?

When I’m feeling a bit overwhelmed or emotional, usually it’s a sign that I need to slow down and take some time out for myself. I switch off my phone, or turn off the WiFi connection. I try to get a good night’s sleep. Or curl up on the couch with a good TV show. Or go for a walk. Or read a book. Most of the time, that fixes the problem.

I also frequent #OzDOC chats on Twitter every Tuesday night, where we discuss and share different aspects of life with diabetes.

There’s my friend Bec of Sweet and Sour Diabetes, who I can just message and say hey I feel like crap today. And she just gets it. And even though she’s 2 hours ahead of me, she tends to stay up late so I’m never really bugging her.

Then there’s my group of YAC legends, and they are legends. I only met these guys earlier this year, and it really does brighten my day to get Facebook Messenger notifications filled with questions, theories, problem solving, meter shots and guess the carbs pictures.

Then there’s my family. They have been behind me 100% since day one. They have helped me out enormously with the financial side of things, and have given me unconditional support with my diabetes management. I wouldn’t be here today without them.

I always say that diabetes gets better with time. Over time, you add more bricks to the wall. Bricks of wisdom. Experience. Tips and tricks. People, and support networks. Over time these bricks simply cement together, making the wall so much harder to knock down.

To read other responses to today’s prompt, click here.

The Blame Game

It’s day 3 of the eighth (and I just had a dumb moment where I had to google the spelling of the word eighth) annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers get a variety of perspectives on each topic. Here is today’s prompt:

Having diabetes often makes a visit to the doctor a dreaded experience, as there is invariably bad news of one kind or another.  And sometimes the way the doctor talks to you can leave you feeling like you’re at fault.  Or maybe you have a fantastic healthcare team, but have experienced blame and judgement from someone else in your life – friend, loved one, complete stranger.  Think about a particularly bad instance, how that person talked to you, the words they used and the conversation you had.  Now, the game part.  Let’s turn this around.  If you could turn that person into a puppet, what would you have them say that would leave you feeling empowered and good about yourself?   Let’s help teach people how to support us, rather than blame us!

I think I’m fairly open about my diabetes. People see me check my blood sugar. People see me exiting, and re-entering the room with a mouthful of skittles. People see me pull out my insulin pump. People see me swipe my arm. I’ll bring up diabetes if it’s relevant to the conversation. I’ve even been caught out on the odd occasion with my shirt up and staring at the infusion set on my stomach!

Yet I find it odd how little they actually ask me about it. I find it surprising that they’re not tempted to ask. Are they scared of stepping on eggshells and offending me? Or is it simply the nature of an invisible illness, that they just don’t notice? I guess it could mean that they don’t automatically see diabetes when they look at me, which is great because there is more to me than just my diabetes.

Yet as much as I don’t like to admit it, diabetes can be isolating to live with at times. Moreso in social situations where others get to be carefree, while I have to worry about carb counts and pockets full of supplies and going low.

I wish I was asked about my diabetes more often. Yeah, I know this is a double edged sword…

Because I also hate having to answer the same old questions, and addressing the same old stereotypes. I can’t stand the looks of pity or sympathy as I talk through some of the things that I have to do. I can’t stand being compared to her husband’s father who suffered at 90 years of age. I hate having assumptions made about me. I hate that I’m only ever asked about my diabetes when I’ve got a plate piled high with desert.

Instead of assuming that sweets are bad for me, how about asking me about what I have to do when I eat them?

Instead of telling me about your elderly relative who had diabetes, how about asking me how I manage or live well with mine?

Instead of giving me looks of pity and sympathy, how about commending me on how proactive and educated I sound?

I want to be asked about diabetes. I’m happy to talk diabetes with you. I just feel like a conversation would be so much more productive without all of the assumptions, reservations, or family comparisons thrown into the mix.

To read other responses to today’s prompt, click here.

The Cost of a Chronic Illness


Its day 2 of the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Insulin and other diabetes medications and supplies can be costly.  Here in the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care?

The cost of having diabetes sure does add up. Over the years, I’ve definitely felt envious of my peers who get to spend their money on having a good time and living like there’s no tomorrow.

But if I have to have diabetes, then there’s no place I’d rather have it than in Australia. My own diabetes care has been relatively accessible and affordable. I am not judged based on my income or socio-economic status. I have never struggled to make ends meet. I have a stable job and a supportive family around me. However, I do expect that there are still many in Australia who would still find it hard to make ends meet.

Insulin is heavily subsidised through Medicare and the Pharmaceutical Benefits Scheme, costing me approximately $35 for 5 boxes of Novorapid insulin.

Test strips, needles and insulin pump consumables are heavily subsidised through the National Diabetes Services Scheme, which is an initiative of the Australian government. I would pay around $16 for a box of 100 test strips and a box of 10 infusion sets for my insulin pump. Needles are free.

My diabetes healthcare is completely free through the diabetes clinic at my public hospital. I have access to a diabetes educator, dietitian and endocrinologist, the latter of whom refers me to any other healthcare professional in the hospital that my diabetes desires.

I’m also fortunate enough to be able to afford a private health insurance policy, which costs me approximately a week’s wage. This covers the costs of any hospital care, and I get benefits on things like dental and optical services. As someone with diabetes, a private health insurance policy will also cover the cost of an insulin pump – something I would definitely not have access to without insurance.

I feel that the biggest barrier to my diabetes care would be the quality of care I have received over the years. Although the public system is free, it doesn’t mean that it’s necessarily great. Busy public hospitals just didn’t have the time for me, especially when there were young children and families who understandably needed it more. I was pushed towards self management after about a year, not knowing any better. In retrospect, not having the support of a diabetes educator from years 2-5 were really detrimental to me. I was unmotivated. I felt isolated, and my diabetes felt unmanageable.

When I jumped online and found the Diabetes Online Community in 2015, I started feeling less “conscious” of my diabetes. I developed an interest in it. I eventually got back in touch with my diabetes team and started on insulin pump therapy, which quite honestly changed my life. I found the motivation to learn and more actively manage my diabetes. Last year I began seeing a private diabetes educator, who now gives me all of the time and support I need. Today, I call myself an advocate, dedicating my spare time towards something I am really passionate about.

I wasn’t always comfortable with my condition. I wasn’t always motivated to self manage, and speak up for what I wanted. I wish a healthcare professional encouraged me to jump online. I wish a healthcare professional had suggested an insulin pump to me. I wish a healthcare professional had encouraged me to seek out peer support. I feel like there are a lot of people out there who are in that place where I once was, just waiting for the front porch light to switch on.

To read other responses to today’s prompt, click here.

Travelling Prepared With Diabetes

Today kicks off the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Diabetes can sometimes seem to play by a rulebook that makes no sense, tossing out unexpected challenges at random.  What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

When I was first diagnosed, I had this attitude that diabetes wouldn’t weigh me down. Quite literally. I wanted to prove that diabetes hadn’t changed me. I wanted to prove that I didn’t need to carry a meter, insulin or jellybeans with me as a just-in-case. It felt weak. It felt like giving into my condition.

So if anyone knows a thing or two about how to travel un-prepared with diabetes, it’s me.

I once boarded a ferry to Rottnest Island, only to discover that I had bugger all insulin left in my pen  cartridge. Instead of trying to find a Pharmacy, I decided to wing it and somehow lived to tell the tale.

i remember going hypo on a Friday morning at work, with nothing to eat other than an overripe banana. Yuck.

I discovered a failed infusion site while I was away from home painting a house one Saturday afternoon, and had to drive home in the pouring rain to change it.

When my insulin ran out halfway through a lunchtime dose, I winged it again, probably running high until hometime.

When I suspected spoiled insulin earlier this year, I had to call my Dad to run some up to me work.

When it comes to travelling prepared with diabetes, my biggest dilemma is deciding whether I actually need to carry those supplies with me, or whether I am simply preparing for the zombie apocalypse.

I like to travel prepared. But I also like to travel as lightly as possible. Us guys don’t exactly have the luxury of handbags…

I’ll often stand in front of my desk before heading out, debating over whether I need to bring this with me. I’ll tuck things in my pockets. Then I’ll take things out because I feel weighted down and over prepared.

I’ve tried the whole keeping supplies stashed in different places. You know, desk drawers, lockers, in the car, in my satchel. In theory, it sounds like a great idea. The only problem is you begin depleting those supplies. And you have to remember to keep topping them up. Not ideal, either.

I’ve recently invested in a small, tube shaped pencil case. I keep all the essentials in there. A meter for travel, spare supplies in case of a pump failure, insulin, and hypo food. Those are my essentials. Nothing more, nothing less. I grab that case every time I leave the house. There’s no more dillemas over what to bring, or what not to bring. It’s not big, bulky or akward to carry. It can even stay in the car if it’s going to annoy me while I’m out.

There’s no easy answer to travelling prepared with diabetes.

You learn from experience.

And you do get better at it over time.

To check out other responses to today’s prompt, click here.

Seven.

Seven years.

I can feel the goosebumps on my neck as I type those two words out.

In some ways, it feels like only yesterday that I didn’t know a world without type 1 diabetes.

In other ways, it feels like a lifetime.

Type 1 diabetes is undoubtedly the biggest challenge life has thrown my way.

Trying to mimic a healthy, working pancreas is no easy feat. Trying to cover carbohydrates with insulin. Trying to keep my blood sugar levels between 4 and 8 mmol/L as often as possible. Trying to make choices that will help me to live a long and healthy life. All while trying to live some sort of a life at the same time.

There’s a lot of trying, if you hadn’t guessed that much already.

As much as I’d like to call myself a superhero and say that diabetes doesn’t get the better of me, it does. When you choose to give something a go, you open yourself up to the possibility of failure. When you choose to open a door, you run the risk of exposing all of your flaws.

Diabetes is demanding. It requires constant attention. It drains me, mentally and emotionally. Every single decision I make through the day has an impact on my diabetes. I feel waves of guilt and emotion course through my veins, from a decision as stupid as eating a piece of chocolate. Diabetes doesn’t stop demanding of me, even at the lowest of times where all I want to do is shut the door and throw in the towel. There are still times where I do feel different, limited or alone because of this stupid condition I was dealt with.

But when you give something a go, you also open yourself up to the possibility of flying.

Starting on insulin pump therapy last May was a huge leap, that ultimately helped me to refocus on my diabetes management and reduce the highs and lows. Having access to continuous glucose data through the FreeStyle Libre flash monitor overwhelmed me at first, but I’ve since learned how to best utilise the data from it. Starting a blog was a little nerve wracking at first, but it’s since made me more passionate and open about diabetes, and led me to some amazing advocacy opportunities.

As a wise person once said, it’s better to try and fail, than to not try at all.

As I celebrate my seventh diaversary today, those are the words I am choosing to live by.

Because there sure is life after a diabetes diagnosis.