Diabetes

Climbing the Sydney Harbour Bridge With Diabetes

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I’d been hanging out for a sunny day during my time in Sydney. Even though I’d already climbed the Sydney Harbour Bridge when I was last here, I so badly wanted to do it again. It was one of the most breathtaking, memorable and liberating experiences in my life. This holiday was all about getting some time out. Diabetes has messed up my headspace and triggered some intense emotional rollercoasters this year, and I really felt as though I needed to have this experience once again. I really felt as though this experience would be the perfect way to hit the refresh button.

This time around, I’d had a Twilight climb in mind. I was hoping that I would get a chance to see the sunset up there, as well as have a photo in front of the night sky. It was just a matter of getting the timing right. Timing. If everything went to plan, I would be up on the bridge at around 4pm, I would reach the top by sunset, and I would get my photo in front of the night sky on the way down. I hoped.

Next up was the dreaded task of having to disclose diabetes to my counter attendant. I hate disclosing my diabetes because its just such a demoralising task. And this time around proved to be no different.

I got a confused look, and a reply that went something like “soooo what does that mean?” (for my climb). Thankfully this didn’t last long and she began asking what sounded like routine questions. “Have you ever lost consciousness from low blood sugars?” No, I’m not an invalid. “Are you on any medication?” Yes, insulin shots with every meal. “Will you be okay being up there for a while without eating?” Yes, I don’t have to eat just because I have diabetes. “The kiosk is over there if you’d like to grab something to eat before you go.”

See what I mean?

It annoyed me that I had to be the one to speak up about wanting to carry my insulin pen and meter up there with me as a just in case. I was told that “we don’t normally allow you to carry items up there.” Not wanting to make a big fuss, I said that I would be fine to have a last test of the BGLs during the prep time.

I was all booked, out of there and had well over an hour to kill before my climb. And boy oh boy did that hour turn out to be one of the most intense and eventful hours out of the whole trip. I had a Hypo on the Harbour, which you can read about here.

I later returned to the BridgeClimb centre, waiting to be called in to start my 3.25pm climb. I did one last check of my blood sugar levels. It was a cool 6.2 following my nasty hypo. We were finally called in, and the prep work started. Group introductions, paperwork and safety instructions. We got dressed into jumpsuits and then had radios, headsets, headlights, beanies, fleeces, gloves and hankies hooked onto us. We were also fitted with belts that would physically attach us to the bridge during the climb. I had snuck my meter and insulin pen in my pocket, only to have to face what looked like an airport security gate. Thankfully, my climb leader had a carry case on his waist for things like this, although this would have been nice to know before! Finally, we each had a run of the practice course, before making our way onto the bridge at around five past four.

We had to climb up some ladders and through some narrow spaces to get to the outer edge of the bridge. That’s about as hard as it got. Once we were on the outside, it was literally just like walking up a ramp with some spectacular views. It wasn’t difficult, it wasn’t super physical and we moved at a steady pace. The sun was hidden behind a few lingering clouds, and I was praying the whole way up that it would come out in time for our first photo.

First stop was the Sydney Opera House, bathed in the last of the golden afternoon sunlight.

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Second stop was an appointment to watch the sun set. It was breathtaking. It was beautiful. It was another one of those moments where the whole world just stopped. In that moment, all I had to do was stand there and take it in. In that moment, diabetes did not even exist. The sun dipped below the horizon, leaving behind it a glowing Twilight sky and the perfect backdrop for my photo at the summit.

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The dark, the cold and the wind began to set in on the way down and it was time to pull out the fleeces. And this final photo was well and truly worth all sorts of cold.

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I could honestly sit here, staring at this photo for hours and hours. Every time I look at it, I see how happy I am. I see what is by far my favourite city in Australia. I see a breathtaking view of the city lights against the night sky. I am reminded of the amazing, once-in-a-lifetime experince that I had. I am reminded of just how relaxed, liberated and free from diabetes I felt that night. It’s something that I’ll be able to go back and draw inspiration from every time diabetes tries to knock me down. And it’s something that reminds me that anything and everything is possible in a life with diabetes.

And most importantly, it was the perfect way for me to hit the refresh button and start the second half of the year.

There’s No Such Thing As “High Use”

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I poured my heart into the column I wrote for Insulin Nation last week, which you can read here. I questioned why I am made to feel guilty for using more test strips than what is subsidised through our National Diabetes Services Scheme (NDSS) here in Australia. I knew it was a topic that I felt strongly about. What I didn’t expect, however, was the overwhelming response from other people who felt exactly the same way that I did. Individuals, parents, children and people commenting from the other side of the world.

Over on Twitter on Saturday morning, a tweet from my #OzDOC friends Kate and Melinda at Twice Diabetes caught my attention. In response to my column, they suggested to a concerned Aussie d-parent that they could apply for a “high use exemption” from the NDSS limit with a doctor’s sign off. Another d-parent joined in the chatter, telling us that she had a letter from a paediatrician outlining the necessity for “high use” testing.

Look, that’s great. I am really pleased to hear that these individuals were able to access their supplies in their time of need. But it’s not good enough. Why should these individuals have to go and justify the need for these supplies? The very supplies that are keeping them, or their children, alive and healthy. By putting people into boxes such as “high use,” we are only further demoralising them. More than likely, they will go to their doctor. They will face a string of questions and concerns over whether they are managing their diabetes well enough. They will face judgement. And more than likely, they will feel inadequate.

In my opinion, there is no such thing as “high use” where Blood Glucose Monitoring is concerned. In my opinion, regular Blood Glucose Monitoring is in everyone’s best interests. It gives me a sense of control and peace of mind over my diabetes. It keeps me safe and healthy as I carry out my daily activities such as work, exercise and leisure. The very activities that can have implications on others if not monitored adequately.

I have gone through burnouts from diabetes. I have gone through periods where I have wanted to give up, and periods where I have lost the will to monitor my blood sugar levels. And during those tough times, the last thing I need is to be encouraged to test less.

I don’t want to place all of the blame on Diabetes Australia or the NDSS. I am really grateful to live in a country where we are blessed with such a good healthcare system. I also blame the meter companies who over inflate the prices, and make a profit off of our disease. But that’s another blog post altogether.

Personal thanks to Craig at Insulin Nation for your support of this story all the way from the US, and for pushing it to Diabetes Australia and the NDSS on social media outside of your work hours. I was also extremely pleased to see that I had a small victory. The NDSS agreed that this quote on their website did indeed make individuals like myself feel guilty:

“There are limits to the number of products you can purchase on the NDSS. If you reach the limit, we will contact you to give you information to help you manage your diabetes.”

The NDSS updated their website on Friday as a result of my column. The limits to diabetes supplies accessible through the NDSS are now clearly specified (they previously weren’t), and there is a much nicer wording for those who require supplies beyond the limit subsidised:

“We understand that some people may require more products to manage their diabetes. If you require further assistance with accessing products to manage your diabetes, please contact the NDSS on 1300 136 588 or at ndss@diabetsaustralia.com.au.”

Thanks to Diabetes Australia and the NDSS for reading the article and taking my opinion on board. I do feel really proud to stand up for all Australians living with diabetes and to walk away with a small victory.

However, we still have a long way to go.

Some Inspiration from the #DOC

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Okay, full disclosure here, I’ve stolen this idea from Diabetes Mine. Sorry guys! The Diabetes Online Community (#doc) inspires me every day, and here’s what’s caught my attention lately.

Two heads are better than one? In the case of Twice Diabetes, I couldn’t agree more. I’ve really enjoyed interacting with Kate and Melinda on Twitter this month @TwiceDiabetes. Beyond their great sense of humour, there’s also some really well thought out opinions on their blog relating to diabetes advocacy issues here in Australia.

I’m really stoked to see my blogger friend Mum of Type 1 finding her feet in the Twitterverse so quickly. You can follow her @mumoftype1. Her blog initially caught my attention for her raw honesty conveying her feelings about her son’s newly diagnosed type 1 diabetes. Last week she wrote an excellent analogy likening her son’s diabetes to looking after an egg.

My other blogger friend Kyle at Training T1D will be cycling 160km through the Barossa Valley in Adelaide next year in the JRDF Ride To Cure Diabetes. Check out Kyle’s story and fundraising page here. I really admire his determination, considering that exercise is not my sport of choice!

Another person you have got to follow on Twitter is Ally, better known as @verylightnosuga. She may be busy with her studies, but she doesn’t let it stop her from sharing her very honest opinions about almost anything related to diabetes and beyond.

One blog (and person) that I take a lot of inspiration from is Renza at Diabetogenic. Renza’s recent post knocked everyone’s National Diabetes Week complaints right out of the park (mine included) when she told us that living with ALL types of diabetes is crap, and that we would be far more powerful uniting and advocating together for ALL types of diabetes.

I related so much to Kelly’s post last week at Diabetesaliciousness, and how she found support from the #doc during a hypo. 

My #doc friend Laddie at Test Guess and Go wrote a heartfelt letter to her daughters in law earlier this month, in relation to the two infants who recently passed away from undiagnosed diabetes.

I read a hilarious post about type 1 diabetes misconceptions by parenting blogger Stevie at A Cornish Mum during UK Diabetes Week last month. I laughed the whole way through!

My #doc friend Rick over at RADiabetes shares some heartfelt stories about living with both Diabetes and Rheumatoid Arthiritis (hence, the RAD). He’s given me a fair bit of encouragement, wise words and laughs since I connected with him during Diabetes Blog Week. Thanks, Rick.

Well done to all of my #OzDOC friends who participated in Run Melbourne last weekend. We even have a fancy new mission statement. Join in every Tuesday night from 8.30pm AEST (GMT+10) by following #OzDOC/@OzDiabetesOC on Twitter.

I know that’s probably just a fraction of what’s out there. What else should I be reading/following out there in the #doc?

Thanks to Banting and Best, I Have a Chance

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If it was the year 1921 today, I wouldn’t be able to get up out of bed this morning. I wouldn’t be able to fight the urge to shut my eyes again. I wouldn’t be able to eat breakfast and drink my coffee. I wouldn’t be able to drive to work. I wouldn’t be able to talk, smile and laugh as I go about my day. I wouldn’t be able to buy that Sweet Treat Muffin and Hot Chocolate for lunch. I wouldn’t be able to crash on the couch at the end of the day with a good TV show. I wouldn’t be able to write this blog post. In fact this blog wouldn’t even exist, because I would have been long gone after my diagnosis with type 1 diabetes five years ago (and because, well, computers and the internet weren’t around back then either, but you get my drift…)

But thanks to Dr Frederick Banting and his assistant Charles Best, I have a chance. A very good chance, in fact, of a living a long and healthy life with diabetes. During this week back in 1921 (July 27, to be exact) and against all odds, Banting and Best first isolated insulin to treat type 1 diabetes.

Dr Banting didn’t let his lack of diabetes knowledge stop him from delivering a lecture on the topic. He didn’t stop himself from developing an interest in diabetes and fuelling his theories. He didn’t let his status as an unknown surgeon stop him from convincing the University of Toronto to give him a small laboratory to put his theories to the test.

Against all odds, Dr Banting managed to achieve the impossible. And if he was able to find a treatment for a disease that was a death sentence, then I think I am capable of achieving just about anything I put my mind to.

I feel like I’ve been spending a lot of time whinging about my diabetes on this blog at the moment. About all the ups and downs and highs and lows and crazy emotions inbetween. But when I think about what the alternative would have been back in 1921, I don’t think I have anything to be complaining about.

When I was lying in the emergency room five years ago, fazed by ketoacidosis, there were two phrases that I can remember the doctor telling my worried parents. The first was diabetes. And the second was something along the lines of me being able to live a normal life. And thanks to Banting and Best, that’s exactly what I’m able to do with type 1 diabetes each and every day.

There are some good reads about Banting and Best here and here.

Someone Else With Diabetes Was Here!

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It was our last morning in Canberra. I was pretty much all packed up and ready to go. With a bit of time left on my hands to kill, I decided to do all of those crazy checks of the room. I zipped up and re-opened my hand luggage, pulled the sheets off the bed, opened and closed each drawer on my bedside table. I knew there was absolutely nothing left in the room, but in one final moment of craziness, I decided to pull the bed away from the wall. And this is what I found.

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It was a ketone strip. And ironically, it even belonged to the very same blood glucose meter that I use.

It’s hard not to feel alone when dealing with diabetes, sometimes. And that’s not necessarily a bad thing. I like being independent. I test on my own. I inject on my own. I correct on my own. I fix hypos on my own. I get angry and frustrated on my own. I get all excited on my own. And I deal with all those crazy thoughts and feelings that go rushing through my head on my own. Okay, maybe I’m a little too independent.

I do my best to talk about diabetes to others, where I can. Last week, I was pretty proud of the fact that I decided to share the eye issues I was having with some of my friends at work. I’m also pretty proud to share with my family the progress that I’m making with this blog and all of the amazing support that’s come from it. But I still struggle to explain to others all of the things I have to do to manage my diabetes. And it’s still a struggle for others to understand that there is a difference between type 1 and type 2.

Outside of this blog and the wonderful diabetes online community, I don’t really know many people with diabetes. And this had to be the closest that I had ever come to someone else with diabetes. I saw that test strip and I was ecstatic. I shouted for the others to come in and see what I had found. I grabbed my camera and began taking photos. I even resisted the urge to post the photo up on Twitter.

Someone else with diabetes was here. Someone else, like me, had to drag type 1 diabetes along with them on their travels. Someone else, like me, had to sacrifice precious holiday time to deal with diabetes. Someone else, like me, had a frustrating time as they did their best to get rid of those ketones. And maybe, like me, they got so frustrated that they flung all of their used test strips on the floor.

In that moment, I was reminded that type 1 diabetes does exist in the real world, too. And in that moment, I felt just a little bit less alone with my diabetes.