Diabetes

Inside the Telethon Type 1 Diabetes Family Centre

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A few weeks ago, I had the privilege of visiting the new Telethon Type 1 Diabetes Family Centre in Perth, Western Australia.

It was a Tuesday afternoon in the midst of April school holidays, so I stepped inside cautiously. I could hear a familiar voice calling out to me. I was greeted by General Manager Rebecca Johnson, and by the looks of things I had the place to myself!

Behind the front desk, I met Crystal and Andrea who were wearing fairy wings, and in the middle of a game of Twister. Rest assured, they were only practicing for the centre’s Picnic In The Park outing on Thursday!

Opposite the front desk was a large kitchen, which I was told would be in full swing the next day for the Centre’s Kids In The Kitchen cooking sessions. The kids would be preparing morning tea for their parents, siblings and grandparents who were all welcome to come along.

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The place definitely had the vibe of a showroom, which is not too surprising considering that it was furnished by IKEA. As I walked around the place, I would never have guessed that diabetes existed here. It really was just a nice place to chill. If I were a kid, I don’t think Mum and Dad would have to drag me here for check ups. I don’t think my brother and sister would whinge about waiting around for me when they had several play areas to keep them entertained.

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I could see Mum and Dad taking a seat in the courtyard with a cuppa. It was definitely a place for the whole family to come to for diabetes support, without so much of a “clinical” feel to it.

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The Centre was funded by Telethon, a charity devoted to supporting sick children in Western Australia. The Centre is reliant on community sponsors, donations and volunteers – who are currently developing a playground directly behind those gates in the image above.

One of my burning questions for Rebecca was how a young adult like myself would fit into this place, if at all. The website and branding appears to target young children and families. Adult events at the Centre seem to be targeted specifically for Parents or Carers of type 1 children.

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Because the centre was funded by a children’s charity, there are strict criteria from the board in regards to the centre meeting the needs of children. Bec acknowledged the need for support services at the centre catering to young adults, defined as age 16 to 30. Many people, ourselves included, are diagnosed in that age bracket. Bec has recently had success in convincing the board to make the Centre more inclusive for young adults. Opened less than 12 months ago however, the Centre is still evolving. 

Young adults and children are welcome at Diabetes Clinics, which run every Friday and Saturday at the centre. Individuals and families are welcome to drop in at any time to access clinical support from a range of diabetes specialists. Support is also available at other times by appointment.

After a tour of the place, Bec and I headed upstairs and took a seat at the conference table. It was pretty cool to learn that we were both diagnosed at age 17 and a few weeks out from our 18th birthdays. Bec has used a range of diabetes devices and gadgets over the years. Currently she uses insulin injections, eats a low carbohydrate diet and uses a Continuous Glucose Monitor from time to time.

I could see how engaged Bec was in the Diabetes Online Community. I was humbled that she stumbled upon my little blog last year after I wrote this post, and took the time to reach out to me. A self confessed lurker, she frequents Twitter for her diabetes news and enjoys reading Insulin Nation and Diabetes Daily – coincidentally sites that I have written for! I also learned that DOC is actually spelt out D-O-C when spoken, rather than pronounced as one word!

One thing that Bec feels really strongly about is the need for young children to come to terms with, and accept their condition. Seeing adults living, and doing great things with type 1 can really inspire the children who come into the Centre. A type 1 diagnosis is not the end.

Stay up to date with what’s happening at the Telethon Type 1 Diabetes Family Centre on Facebook, and learn more at telethontype1.org.au. Special thanks to Bec for taking the time to meet with me.

More Reasons For The Insulin Pump

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It feels like forever ago that I made the big decision to switch to an insulin pump, and now the big day is only two weeks away.

Over these past couple of months, one of my reasons for making the big switch is becoming much clearer.

I cannot wait to be able to fine tune my insulin to better suit the time of day.

I usually head to bed at around 10pm most nights, which is usually before all of my rapid acting insulin from dinner has worn off. I often find myself needing a good correction dose later on, and I’m not awake to be able to do this. If I’ve eaten something really Low GI like Pasta, it often needs some delayed insulin to cover it. If I’ve eaten something higher in fat or protein, ditto. So most nights, I end up setting 1am or 2am alarms which allow me to test and correct. It’s a lot of work.

Lantus tends to work best when I eat a similar amount of carbohydrates each day. Some nights, 10 units isn’t enough to keep me stable through the night. Some nights, 10 units will send me plummeting to lows. Other nights, my blood sugar will hold nicely until 4am, and then begin to plummet. Ideally, I imagine that my pump would be able to deliver a heavier background insulin rate between say, 10pm and 1am, and then a lighter rate for the rest of the evening.

Part of me is ridden with guilt. I feel like I have failed injections, and that I should have been able to get them right. I question whether I am getting the pump to be more lazy with my diabetes. I feel guilty for demanding an expensive piece of diabetes technology, when other people in the world can’t afford insulin alone. I feel guilty for not having the willpower to follow a regimented diet. I feel like I have a bad diet, simply because I can’t get my blood sugar levels quite right around the food that I eat.

However, none of this could be further from the truth.

I am working hard – extremely hard – with a very demanding condition. A condition that never lets me rest, and is changing all the time. I am striving, constantly, to do better. I know exactly why I am getting an insulin pump, and what I want from it. I haven’t made this decision lightly. I don’t eat exactly the same thing day in and day out. I enjoy variety in my diet, and I don’t apologise for it.

I’m going to try and stop feeling so guilty.

It’s my diabetes, and my choice in the way that I manage it.

Let the final countdown to pump day begin…

Guest Post: I Wish People Knew That Diabetes

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Hey everyone, Scruffy here.

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What’s that? You’ve never heard of me? What on earth does Frank talk about on this blog then?

Can you believe that my owner took off on holidays last week, and left me behind at Frank’s house? Sigh…

Frank’s been busy patting me, taking me for walks and feeding me scraps this week. I’m a bit upset that he doesn’t let me sleep inside at night like I do at home. Not nearly enough food here for my liking, either.

I’m a bit sick of watching Frank write on this blog, when he could be entertaining me instead. So, I thought I would lend him a hand today and make myself known. He doesn’t really deserve any favours from me, though…

Can you believe that I had to watch Frank tweeting about I Wish People Knew That Diabetes for the whole day last Wednesday? I don’t know what those humans are complaining about…I Wish People Knew That Diabetes means us dogs have it tough!

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I Wish People Knew That Diabetes means I have to watch Frank eat Tim Tams when he’s low. Well, I think he just says that to me so that I’ll leave him alone!

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I Wish People Knew That Diabetes makes Frank upset sometimes, and he doesn’t want to play with me.

I Wish People Knew That Diabetes means Frank has to get his insulin out of the fridge, when he could be getting food for me instead.

I Wish People Knew That Diabetes makes Frank pick me up when he’s upset, and I can’t run around the house and see what everyone else is up to!

I Wish People Knew That Diabetes means that Frank can’t wolf down his dinner like I do. He has to count carbs and give insulin first! Watching his delicious dinner plate for so long is torture!

Oh, and can you believe this – Frank just reminded me that if I’m going to be talking about I Wish People Knew That Diabetes, I need link to the official website at iwishpeopleknewthatdiabetes.org. I thought I was taking charge of this blog today!

To top it all off, they’re saying it’s going to rain again today.

It’s going to be a long day…

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Same, Stupid Mistakes

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I wrote this last night, hence the timing may not make any sense if you’re reading this morning.

My blood sugar was a perfect 4.8 when I woke up this morning.

Yet right now, I can taste the sickly residue of skittles that are stuck on my tongue after all of the hypos I’ve treated today.

I wonder where I went wrong today. I wonder where I keep going wrong.

I’m exhausted, just writing this, but I need to get today off my chest.

It was one of the first real winter mornings of the year. I woke up after a comfortable 8 hours sleep. Feeling the early morning chill, I began to prepare one of my favourite winter morning breakfasts – a hot bowl of porridge with half a cup of milk. The sweet smell of Espresso was brewing in the kitchen, as per usual.

36 grams of carbs for my breakfast, a carb ratio of 1 unit for every 6, and I dialled up 6 units on my insulin pen. For a moment, I considered opting for 5 or 5.5 units instead, seeing as I was close to the hypo range. Add to that the fact I would be at work and on my feet shortly, meaning greater insulin sensitivity. I don’t know why I dismissed that thought, but I did. I dismissed it, and went with the full 6 units of insulin instead.

By the time 8.30am rolled around, my blood sugar was 3.9. Three point fucking nine. Fuck diabetes, I thought to myself. Fuck diabetes, I told myself as I reached for the canisters of skittles in my locker and started shoving them into my mouth.

It was the stupidest mistake. I’ve made so many stupid mistakes like these recently that it’s not funny. I should know better. I do know better. Yet I just don’t seem to be thinking clearly. I feel like shooting myself in the foot.

I was in awe of the DOC members yesterday who took part in sharing a #dayofdiabetes on Twitter. I’m in awe of expectant people like Kelley and Kerri who are so diligent with their diabetes. I’m so happy for them, but at the same time I feel like I’m failing. I feel like I can’t even give myself the diligence that I deserve.

It was one of those days where I just had the words fuck diabetes on repeat. I ripped open a bag of Malteasers (which I did share, FYI), because I really couldn’t give a fuck for today. But at the same time, I think to myself, how much longer can I afford to keep saying this?

One of the best things about today was reading this from Brianna.

And learning that she’d never heard of Malteasers. Malt coated chocolate balls, FYI.

DOC friends for the win.

Here’s hoping tomorrow’s a better day.

A Pitch For My Kitchen Rules

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Last week, I sat down and watched a full episode of My Kitchen Rules for the very first time. As much as I hate to admit it, it’s pretty easy to get hooked in.

Do I watch it because I’m inspired by the “home” cooking? Nope. Do I watch it because it shows genuine “reality?” Absolutely not. Rather, I love sitting in front of the telly and picking the show to pieces.

Every year, the show trots out the same cliched characters and stereotypes that have been done to death. The lovebirds, the villains, the couple with big egos, blah blah blah. Watching the contestants’ behaviour and dialogue is cringe-worthy. It comes across so forced and so unnatural. I watch the show and I think to myself, ‘who the hell talks like that!’

I love watching the manufactured drama unfold as the couples prepare meals for the competition in their homes. 

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I say manufactured, because it’s so obvious that it isn’t real. (And the gif, because I’ve been watching Downton Abbey all weekend). One night, the oven’s burning. The next night, one of the dinner guests is making nasty remarks about the food served up. Another night the team has a meltdown in the kitchen, magically pulls it together before the end of the episode and wins a perfect score. Oh, and did I mention that crying is a prerequisite to be on this show?

I really feel for those poor contestants who are forced to sit at the dinner table for what appears to be a good 10 or 12 hours. In an episode last week, the guests arrived for dinner at what looked like lunchtime, and by the time the final scores were issued, it was dark. I can only assume the crew take their time filming several takes and gathering lots of footage to ensure the most dramatic on-screen effect.

As I was sitting in the lounge room watching last week, I realised that diabetes would be the perfect character for the show. The producers would surely eat it up.

Imagine the back story. I could say that I’ve lived with diabetes for years, and that I was bullied because of it. I’m going on the show to prove that diabetes won’t hold me back. All reality contestants seem to have something to “prove” these days, right?

I could dramatically feign lows in the kitchen. I could stop to check my blood sugar, with the result dramatically revealed after a commercial break. I could have a meltdown over my diabetes right before the guests are about to arrive, and then miraculously pull it all back together in time to serve them dinner.

I could be the contestant with a big diabetes ego. I could criticise all of my competitor’s dishes for not being diabetes friendly. I could whinge about there being no nutritional information or carb counts on the menu. I could test my blood sugar at the dinner table and blame the food for causing my levels to spike. 

While My Kitchen Rules is hardly about the actual cooking, there’s no shortage of people who continue to watch it here in Australia. At a time where we are facing issues around sugar consumption, unhealthy diets and obesity, it’s a shame that shows like these aren’t doing more to inspire people to cook simple meals at home.

We will be discussing online and offline diabetes peer support during tonight’s OzDOC chat. Join in Tonight from 8.30pm AEST by following #OzDOC on Twitter.