Dealing with Diabetes

Inside the Telethon Type 1 Diabetes Family Centre

1 Comment

IMG_0921

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.

IMG_0906

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.

IMG_0911

IMG_0910

IMG_0913

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.

IMG_0916

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.

IMG_0907

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.

Glucose Monitoring Doesn’t Tire Me. Diabetes Does.

1 Comment

I rely heavily on glucose monitoring in order to manage my diabetes. I check before, and two hours after every meal. I check before I go to bed, during the night and when I wake up in the morning. If there are times when my blood sugar is irregular, I find myself testing every hour. I have spoken out frequently about glucose monitoring, and how strongly I feel about it.

I was very keen to take part in the yourSAY (Self Management and You) research a few months ago, looking into the attitudes towards glucose monitoring in Australia. I was very much looking forward to reading the results that were released last week by Diabetes Australia, Abbott and JDRF Australia.

YourSAY Glucose Monitoring Survey_INFOGRAPHIC

Monitoring my blood sugar has become second nature to me. I can’t say that I’ve ever lacked the motivation to test. I hardly even think about it anymore. Glucose monitoring is not something that I see as a choice. It’s a way of life.

In that regard, I was surprised at how many people reported that they became “tired” of glucose monitoring. I think I’m more “tired” of diabetes itself. Diabetes is to blame for the lows that force me to stop what I’m doing. The stubborn highs that just won’t go down. The nights where my sleep is interrupted by blood sugar swings. The food that I feel guilty for eating. My glucose meter is only the messenger, telling me what’s going on. My meter gives me a sense of control over the unpredictability of diabetes, and I wouldn’t want to live without it. (Unless diabetes is cured, of course. Then I would love to live without it…)

While my attitude remains unchanged, glucose monitoring is without a doubt inconvenient. When I’m sitting at my desk at home with my meter within arms reach? Easy. When I’m going out for a few hours, and forced to carry that crap around with me? Not so much. I’ll often leave my stuff at home and fly blind for a few hours just for the sake of convenience. I would love to see an affordable, minimalistic device that offered greater convenience while travelling.

I was also interested to read that type 1s checked their glucose on an average of 6 times each day. Yet our National Diabetes Services Scheme only subsidises 5 test strips per day. 2 in 3 people do not always check their glucose as recommended by their GP. The survey itself highlighted a number of benefits of glucose monitoring in managing diabetes: adjusting insulin, managing illness, avoiding hypos or hypers, and peace of mind. Yet I was once made to feel guilty for purchasing too many test strips. Surely, removing these limits would be the first logical step towards encouraging glucose monitoring?

Finally, I was disappointed that these findings did not outline or commit to any solutions to lessen the “burden” of glucose monitoring. I can only hope that this research will trigger conversations and change in the not too distant future, for the sake of the people who took the time to contribute their valuable and personal insights.

You can read the full results of the yourSAY survey here, and the media release here.

“Do You Use a Lot of Test Strips?”

2 Comments

DSC00609

“Do you use a lot of test strips?” My pharmacist asked me, as I placed a handful on the counter to purchase.

I went silent, lost for words to answer his question.

“Yeah, I do,” I replied.

I was wondering if I was going to have to justify myself. Was this going to be another big dilemma where I would be told that I’m using too much? Was the computer going to tell him that I’d gone over the limits and couldn’t purchase any more?

“Do you see a diabetes educator?” He asked.

He sounded like he wanted to suggest something. That I needed to get help?

“We’ve actually got a little boy who comes in here. He’s got this little sensor that he wears on his arm that measures his fluid. He swipes over it, and it gives him his readings. He doesn’t have to prick his fingers so much. It even gives him a history of his readings.”

I smiled, because I knew exactly what he was talking about. “Yeah, that’s the Freestyle Libre,” I replied.

A little over a year ago, I wouldn’t have even known anything about this. I would have just stood there and politely nodded, but disinterested all the same. I’m so proud of the interest I’ve taken in diabetes over this past year. I love how passionate and how “in the know” I feel around the subject of diabetes. I loved that I was able to hold up that conversation and sound like a bloody expert. The happiness I felt for that little boy and his mother was so real.

I know that he was genuinely being nice, but I still felt I needed to justify myself before walking out.

“Just because I use a lot of test strips, it doesn’t necessarily mean I’m struggling with my diabetes. That’s the common misconception among healthcare professionals. Regular testing is just something I do that helps me to manage my diabetes.”

“And just because I’m buying them, it doesn’t necessarily mean that I’ve run out of them at home. You’ve gotta stock up, right?” I said, thinking fondly of this “Clean It Out” prompt from Diabetes Blog Week last year.

Removed From My Diabetes

1 Comment

I’m heading back to reality today after a relaxing, yet eventful Easter break, a few too many Lindt bunnies and hot cross buns.

https://www.instagram.com/p/BDhVxlpA_ev/?taken-by=franksita

I haven’t easily forgotten the exhaustion I felt towards the end of last year. I’d pushed myself too hard at the time. My mind was in overdrive thinking about all of the things I wanted to get done at once, even though I knew it wasn’t realistic. It also wasn’t realistic to be able to keep going to work day in, day out for months and months on end with no break in sight.

I’m trying to map out my breaks throughout 2016, so that I’ll have something to look forward to. I’m also trying to give myself a bit more time to breathe at the end of the day, reminding myself that all of the things on my list will still be there to do tomorrow.

Hence, a break over Easter, and a break from my blog.

I will also confess to feeling a little ‘removed’ from my diabetes for a few days over the Easter weekend. Diabetes took a bit of a backseat while I was worried about a family member who wasn’t well.

The routine things like testing my blood sugar level after lunch, or getting up to test during the night seemed pointless in comparison to what was going on. There were occasions where I would fail to give my insulin dose straight away. Seeing morning numbers like 10, 12, or even 14 on the meter are usually enough to make me either angry or emotional (or both). Yet they didn’t even upset me in the slightest at the time. In comparison to what was going on, a few high numbers felt like the least of my worries.

For almost six years, I’ve managed diabetes through uni assignments, through working, through celebrations, through burnouts, through birthdays, Christmases and Easters. Yet there’s only ever been one thing that has actually made me abandon my post as the operator of my broken pancreas.

Distress.

I felt removed from my diabetes that weekend. I felt as though my diabetes was miles and miles away from my body. I didn’t want anything to do with it. Rather, I didn’t feel compelled to do the things that I should have been doing. Those things didn’t even seem remotely important at the time.

It was bitter to see someone I loved unwell. But it was sweet to have a break, to get used to the whole not-going-to-work thing, watch movies at lunchtime and watch Autumn set in.

IMG_0803

Bitter-Sweet. Just like diabetes, right?

An Insulin Logging Adventure

2 Comments

My meter is a pain in the ass at the moment. Every time I’ve gone to use it over the past couple of weeks, I’m reminded of a promise I’ve failed to keep. A promise to my diabetes educator that I would log my insulin doses into the meter. I flicked past Monday, February 29 in my diary, where I’d reminded myself of that very promise.

DSC02005

I feel so guilty that I’m not using this new, smarter device to it’s full capability. I feel like I don’t deserve the luxury of having a shinier, fancier looking meter that goes with this decade. I feel like I don’t deserve the smaller test strips that use less of my blood and make less of a mess on my desk.

DSC02006

I’m slack. I just haven’t been bothered to do such a menial task, when diabetes is already so consuming in itself. It’s a task that seems so worthless when there are so many more important things to do in the grand scheme of diabetes. I’ve also been a bit worried that the numbers won’t live up to Gwen’s expectations.

But I’ve made the decision to switch to an insulin pump. For lack of a better phrase, I’m going to have to own the consequence of that decision. Carb counting. Logging my insulin doses. Sending the meter reports to Gwen, so that we can fine tune things and prepare my insulin ratios for the pump. If I want to maximise the benefits of insulin pump therapy, then this is something I’m going to need to make a habit of. And I need to stop obsessing over the numbers not being “perfect.”

Today marks day 4 of my insulin logging adventure. I’m no longer relying on 3 different meters stashed in lockers, desk drawers and satchels. I’m carrying my Insulinx meter around with me everywhere, which gives me no excuse not to log an insulin dose when I forget! I’m also hoping to be able to send off some data to Gwen before Easter next week (eek!). 

Four days in, and I’m already seeing benefits. I’m thinking more carefully about what I’m bolussing for. When I go to test 2 hours after a meal, I’m reminded of how much insulin is still on board in my system. I can see on the screen how much more of a drop I can expect, which has stopped me from my bad habit of over-correcting and ending up hypo later on.

DSC02007

Despite being sick, battling stubbornly high BGLs, and being hypo more than two times in one week, I am powering through all of this. When I looked at my lunchtime reading yesterday afternoon, I kind of felt like I was kicking diabetes’ ass!

DSC02008