Type 1

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.

I Know What My Supplies Mean to Me. #Insulin4All!

4 Comments

DSC01383

If you’ve been reading this blog for a while now, you’ll know how strongly I feel about blood glucose monitoring and test strips. I could not possibly survive without my test strips. Sometimes I use as many as 10 a day. Test strips, among other diabetes supplies, help me to feel grounded and in control of my diabetes. I could not possibly live without them. So much so that I’ve been driven to write some pieces, both here and for Insulin Nation, advocating for greater access for people with diabetes in Australia.

So when Elizabeth Rowley from an organisation called T1International reached out to me about a campaign called #Insulin4All, it seemed like a natural cause for me to support.

It’s easy to take diabetes supplies for granted when I live in a country where I have always had excellent and affordable access. It’s easy to take my diabetes healthcare professionals for granted when they are so easily available, and at no cost to me under public healthcare. It’s easy to forget that these supplies, and professional support, are what keep me alive and healthy. Today, and each and every day for the rest of my life. And I couldn’t imagine my life without them.

When I think about disadvantaged people in other parts of the world who cannot access insulin, among other diabetes supplies, I really have nothing to be complaining about. There are people out there with type 1 diabetes who struggle to survive because they cannot access life saving insulin, blood glucose test strips and basic healthcare. Some take insulin without knowing if their blood sugar level is high or low. Some suffer diabetes complications, or die a premature death from a lack of supplies, education and healthcare. There are plenty of really touching stories on T1International’s blog.

I support #Insulin4All this November, because I know what my diabetes supplies mean to me!

I hope that you will join me, and have a bit of fun with it too.

So, you need your sign, with the words “we are the world in World Diabetes Day,” and the hashtag #Insulin4All. I felt like a kid again, with my ruler, lead pencil, eraser and textas, carefully outlining my letters and words on a straight line and then marking over them!

Then you need a photo, with yourself or a group holding the sign. Get creative. The best I could come up with was holding a handful of my Lantus pens. And, trying to find the best lit spot in the house free of noticeable junk in the photo!

Then, head on over to insulin4all.tumblr.com and upload your photo to the campaign wall.

And spread the word! #Insulin4All!

tumblr_inline_nv3hww5uis1t307pf_500

In Conversation With a Type 1 Mum

Leave a Comment

Mum and I had a rather interesting conversation with a type 1 Mum at the insulin pump information evening that we attended last week.

I’m always drawn to stories of type 1 parents and younger children. I was diagnosed at the age of 17, where I was able to manage my diabetes independently most of the time. My parents didn’t have such a “hands on” role as they may have if I was diagnosed at a younger age. I guess, overall, we would both have completely different experiences in diabetes management.

Type 1 Mum was at the insulin pump evening for her 9 year old daughter, who was diagnosed with type 1 diabetes at the age of 4. She was also interested in a Continuous Glucose Monitor, as her young daughter would often neglect to test her blood glucose levels at school or fib about the numbers. Obviously at such a young age, her daughter does not fully realise the importance of why she has to test her blood glucose.

At school, her daughter had a close group of friends who all knew about her diabetes. This year, however, has proven more challenging with class groups being swapped around. The children will often share food at lunchtime, without fully understanding the implications of her daughter eating something like a lollipop. The school also has an aid in the classroom to help with blood glucose tests and insulin injections. However since turning 9, she is expected to be able to manage diabetes on her own at school. She is lucky, however, that the aids there for other children will also check on her at lunchtime.

Out of my own curiosity, I asked Type 1 Mum whether she regularly checks her daughter’s blood glucose levels during the night. She told me that she would normally test once during the night, at around 1am. Her daughter would normally sleep through the nightly blood glucose tests. If the result showed up low, they would “sleep-feed” her glucose tabs and juice boxes.

She also asked me about if I test through the night, being an older person. I told her that, obviously, for myself, I am very motivated to check my blood glucose levels. The decision to test during the night would come down to how confident I am that my BGL will remain stable. If I eat junk food in the late afternoon, I know that the fat will send my BGLs up after I go to bed. But there are other days where I have eaten well, and I am confident I will remain stable.

It was great chatting with you, Type 1 Mum. Best of luck with the decision you choose to make.

A cracking walk on a cracking #DOCtober Friday.

https://instagram.com/p/85DCeFg_Sb/

A Rare Sighting of Diabetes In The Wild

Leave a Comment

DSC01122

I have a love hate relationship with books. I used to be the most enthusiastic reader in my school days. I would wake up early in the morning just to squeeze in half an hour of reading before school. I would eagerly participate in the Premier’s Summer Reading Challenge, proudly logging hours and hours of reading. I would have competitions with my friends at school to see who could finish the new Harry Potter book first. I can even remember my year 3 teacher telling me off once because I was finishing the classroom books too quickly! And, I remember eagerly convincing my Mum and Dad to take me to buy the final A Series of Unfortunate Events book on the day it was released.

I’ve well and truly lost my passion for reading over the years, and I kind of feel guilty for it. My Mum and my sister laugh at me everytime they see me pick up a new book, knowing that I’ll set it down after a day and let it gather dust. Sure, I still read about the things that interest me. I collect a lot of reference books on technology, marketing, diabetes and diet. I read a lot of newsletters, magazines, news articles and diabetes blogs. But I guess I’ve lost that passion for reading something from start to finish. I’ve lost that motivation for sticking with something through. And I guess I just don’t see the point of reading books anymore.

I was book hunting on Saturday morning at the massive Save the Children Book Sale at UWA. My arms were filled with bargain books about – take a deep breath – diabetes. As I was standing there, leaning over those book tables crowded with people, a woman asked me where I had found the diabetes books I was holding. I pointed her over to the correct table, and she went on her way.

Normally, I would have ended it there. But that day, I felt hesitant. I wasn’t sure if I wanted to follow her. I wasn’t even sure if she wanted to talk to me. But then again, she already had spoken to me. I wanted to help her. I wanted to make sure that she didn’t pick up the books that I had found too medical or too technical to read. And so, I did the craziest thing and decided to chase after this rare sighting of diabetes in the wild.

As we stood there, talking books, we eventually went on to talk about our connections to diabetes. Turns out we both attended the same diabetes clinic, we both knew the same endocrinologist and we had both been diagnosed in the last couple of years. Pretty cool! I was a type 1, while she was a LADA (Latent Autoimmune Diabetes of Adults), or slow onset type 1 diabetic. I was a typical young adult, while she was an older and less common example of type 1 diabetes. She also volunteered at the new Telethon Type 1 Diabetes Family Centre here in Perth, which was quite fascinating to hear about.

After having that conversation, I finally realised that what I am reading at the moment is a big deal. What I am reading does count for something, even if it’s not done from the first to the last page of a book. It doesn’t matter if I’m only reading a chapter out of a book, an article from a magazine or a post off of a blog. What counts is that I have an interest, even if it’s not an interest by choice. An interest that brought two complete strangers together on Saturday. An interest that offered me 5 minutes of great, and hopefully useful conversation. A conversation that helped me to feel a little more grounded and a little further away from the diabetes wild that I live in.

And that’s reason enough for me to keep reading.

If you’re in Perth and looking for some bargain books, the Save The Children Book Sale is on at UWA until Wednesday.

I Have Type 1 Diabetes, and It’s Not My Fault

5 Comments

Happy National Diabetes Week to my fellow Aussie d-friends! This year’s campaign, ‘280 a Day,’ asks us to help raise awareness of the 280 Aussies who are diagnosed with diabetes every day.

Going by the stats on Diabetes Australia’s website, there are 1.1 million Aussies living with diabetes. 120,000, or 10.9% of those people have type 1 diabetes. And of those 280 people diagnosed a day, around 31 of them are told they have type 1 diabetes.

When I was diagnosed with type 1 diabetes on May 9, 2010, there were 30 other people going through exactly the same thing I was. And although I wouldn’t have wished it on any of them, its a very comforting thought.

30 other people were feeling weak. Lethargic. Exhausted. Thirsty. Nauseated. Breathless. Constantly needing to urinate. Losing their saliva. And their appetite. There were 30 others out there who, just like me, were not feeling like themselves. There were parents, just like mine, who were starting to worry about their child’s deteriorating state. Other doctors across the nation were hearing patients recall those symptoms I was having. Its likely that there were others, like me, who were misdiagnosed. And there’s a very good chance that there was someone else, just like me, who had to be rushed to hospital with severe ketoacidosis.

There were 30 other lives that were changed permanently on the 9th of May, 2010. 30 other people had their very first blood glucose test. The first of thousands and thousands. 30 other people were told they would have to take insulin injections for the rest of their lives. And to overcome their fear of needles. And there were 30 other groups of loved ones feeling concern and uncertainty.

And there’s one thing that I would like to remind myself.

It’s not my fault.

I didn’t do anything to cause this. I didn’t do anything to deserve this. I didn’t have an unhealthy diet. I didn’t eat too much junk food. I didn’t have too much soft drink. I wasn’t a lazy person. I wasn’t overweight. I didn’t spend too much time in front of the television. My parents took good care of me. And my loved ones had a good influence on me.

Type 1 diabetes is a complete and utter mystery. And there is absolutely nothing I could have done to prevent it. But I have been able to live a relatively normal life. And hopefully, a long and healthy life.

I’ve still been able to enjoy cake.

I have still been able to visit some amazing places.

I’ve still been able to drink coffee.

…and eat Cannoli.

Don’t let anyone tell you that you that type 1 diabetes is your fault. And don’t let type 1 diabetes stop you from doing anything.

Diabetes Australia’s National Diabetes Week 2015 runs from July 12-18, 2015. To find out more about the ‘280 a Day’ campaign and how you can get involved, click here.