Month: August 2015

To My Dear Friend Mr Hypo

2 Comments

To My Dear Friend Mr. Hypo,

I’ve been in denial about you. For a very, very long time, I’ve been pretending that you don’t exist. I’ve done a pretty good job of hiding the way you make me feel. In fact, the people around me wouldn’t even know that you are there.

I am writing to say that you are one of my least favourite things about diabetes.

You have a knack of waking me up in the middle of the night.

You are the reason I swear.

You are the reason my family and friends see me in a bad mood.

You leave me feeling ashamed.

You leave me feeling guilty.

You leave me feeling demoralised.

You make me feel about this big.

And you know exactly how to make a grown man cry.

For a long time, I’ve struggled to admit that you are one of the biggest hurdles I’ve had to overcome. Because saying that you have gotten the better of me is like admitting defeat. And admitting that I am not controlling you as well as I should be.

Locking you away two weeks ago was one of the best things I ever did. During these past two weeks, I’ve had some of my best nights sleep all year. During the past two weeks, I’ve rediscovered what it’s like not to be bothered even once between the hours of 10pm and 6am. And during the past two weeks, I’ve woken up feeling on top of the world.

Every morning when I test my blood sugar levels, I know exactly how you feel every time you come to visit. I raise my arm in victory, and quietly exclaim “yes!” I am so pleased that you have not caused a single wave in my blood sugar levels for 8 whole hours straight. And I am so pleased at the thought of those perfect blood sugar levels for 8 whole hours straight. There is no better way to start my day.

I think I have finally found the key that will keep you locked away for a very, very long time. I’ve hung it up on a hook labelled ‘Patience.’ With ‘Patience,’ I am able to resist the temptation of checking my blood sugar levels straight after dinner. With ‘Patience,’ I am able to resist the temptation to over correct my blood sugar levels to get them where I want them to be now. And with ‘Patience,’ I have finally been able to rediscover myself away from you.

And that person is someone I look forward to getting to know.

With no regards,

Frank

Climbing the Sydney Harbour Bridge With Diabetes

2 Comments

714152540

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.

714152505

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.

714152523

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.

714152542

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”

6 Comments

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.