“I personally wish that my diabetes healthcare professionals had asked me how are you going more often. Not how are your blood sugar levels going. Not how is your diet and exercise going. Not how are the number of hypos you are having every week going, either. A new diagnosis is a huge thing to deal with. A little empathy and understanding would have gone a long way in helping me to acknowledge that sometimes it might be okay not to be okay.”
“Doesn’t your sugar levels go high if you eat too many sweets?”
This was a question that was posed to me over the weekend, as I reached over and grabbed a sweet from the table.
“I’m low at the moment” were the first words I could get out of my mouth, resisting the urge to add more words until the sugar was sitting safely in my belly.
“I have type 1 diabetes. My body doesn’t produce any insulin.”
I pulled my pump out of my pocket, thankful for my newfound prop that keeps my flailing hand gestures at bay.
“This delivers all of my insulin for me. Technically speaking I can eat anything I want, so long as I give insulin to cover it. Obviously it is better for my blood sugar levels if I eat healthier foods, though.”
This person then went on to tell me that she had been recently diagnosed with early signs of type 2 diabetes, and that the lifestyle changes suggested by her doctor were easier said than done. That she wasn’t sure how changes to her diet would fit in with the rest of her family at home. As she questioned her need for the medication prescribed to her, I could see just how hard it was for her to accept her condition. It brought back my own memories of hiding my diabetes, unable to accept my new ordinary.
I curiously asked if she was testing her blood sugars at home, or whether she had seen a diabetes educator yet. As she told me ‘no,’ I nodded my head. The last thing I wanted to do was to try to give advice. The last thing I wanted to do was to act like I knew what she was going through, or what was best for her. Type 2 diabetes is completely different to type 1. Heck, one person’s diabetes is completely different to another’s.
Yet at the same time, I felt like I should have done more to help her out. I felt sorry for her, because her doctor didn’t seem very helpful or supportive. I hope I said the right things.
“I know it’s hard. It’s taken me ages to make changes that have lasted. I’ve had diabetes for six years, and I still have days where I don’t feel like I’ve got it right.”
All I really wanted to do was to give her a big hug and tell her everything was going to be okay.
Hopefully she sees in me that it will be.
Diabetes campaigns here in Australia never cease to disappoint me. They always tend to focus on the negatives, such as the complications and the hard hitting statistics which instil fear. Our campaigns lack positivity, and don’t do those of us living with the condition a lot of justice.
In my humble opinion, a campaign for Diabetes Week is simple. One where we encourage people living with the condition to share their stories in order to help raise awareness. Diabetes UK always seems to do this very well, with positive, empowering campaigns that actually engage and involve people with diabetes.
Before I start getting depressed about the awful complication-themed Australian diabetes week next month, I thought I’d add my two cents worth to Diabetes UK’s fantastic campaign for Diabetes Week, Setting the Record Straight. Here goes…
1) A diagnosis does not mean that you’ll develop complications. I heard a lot about complications in the Australian media during the first year or so after my diagnosis. I remember feeling horrified about that possibility, and even writing myself off because of my diabetes in conversations. It took me a long time to realise that this was in fact, not true.
I still remember a fantastic quote I found somewhere on the internet that went something like “you might feel like crap today, but complications can take years to develop.” It’s a great perspective and it always reminds me that it’s never too late.
2) Diabetes takes time to get right. A LOT of time. After I was first diagnosed, I remember talking to others in the context that I would eventually get it sorted. Once I had everything figured out, I wouldn’t need to test my BGLs so often and I wouldn’t be having so many hypos. Six years later, I’m still trying to get it right!
My diabetes educator reminded me recently that “even though we want to do as much as we can straight away, it takes time to get it right and you need to be patient.” Be kind to yourself.
3) You don’t have to turn your life upside down or give up everything! Magazines are full of ways to change your life and feel better overnight and blah blah blah. Doctors talk as though change can happen with a wave of the magic wand. It’s completely unrealistic. I’ve made a lot of small, gradual changes to my diet and my routine since I was diagnosed. But I haven’t compromised on the things I love. I don’t do dedicated exercise, because I don’t enjoy it. I still eat chocolate. I still drink lots of coffee. I don’t peel the skin off my takeaway chicken. I still enjoy myself at Christmas time.
A colleague recently told me that “it’s easier said than done.” While I do agree, I reminded her that it doesn’t mean that you have to be unhappy.
4) Finally, I’m loving the Faces of Diabetes campaign that’s going round on social media. Because there are actual human beings behind the condition, and it’s important to keep that in mind when advocating. You can get your picture here.
Happy Diabetes Week to those of you in the UK! You can find out more at diabetes.org.uk and by following #DiabetesWeek on social media.
On this day, exactly six Mother’s Days ago, I was making one hell of a racket in the kitchen. Mum walked into the kitchen in the early hours of the morning, to the sight of me making Orange Juice Granitas with the Snow Cone Machine. I had woken her up, and she was angry.
“The doctor told you to have hot drinks!” She yelled at me, referring to what we believed at the time to be a virus.
Little did I know that when I woke up in a few hours time, I would be taken to hospital. Little did I know that in a few short hours, I would be diagnosed with diabetes. A condition that would change my life forever, yet a condition that would shape the person I am today.
When I think about six years of life with diabetes today, it’s hard to believe that it’s only been six years. In some ways, it feels like it’s been a lot longer than that. I can hardly remember what life was like without the finger pricks, the insulin injections, the 2am alarms and the corrections today.
Yet every time I recall this series of events, it feels like it happened only yesterday.
Nothing else in my life has ever demanded more time and attention. Not a day goes by that I don’t worry about whether I am doing enough to stay on top of my long term health. Despite my family’s best efforts to praise me, and to tell me that I shouldn’t feel this way, diabetes always weighs on my conscience. Nothing else in my life has ever made me feel so guilty.
At the same time, I do feel proud of myself. Everything I have accomplished in the last six years sounds amazing, simply for the fact that I have done it with diabetes.
I’m grateful that I can still live a relatively normal life. I can’t recall anything that I haven’t been able to do because of diabetes. I’m so lucky to live in a country where I have access to everything I need to stay healthy.
Not a year has gone by that I have not been reminded of my diaversary on the 9th of May. But I have never really celebrated it. And after a year and a half in the diabetes community, I’ve been thinking long and hard about what I should do to mark this day.
While my diabetes might have overshadowed Mothers Day all those years ago, today I realise I have two good reasons to celebrate.
Happy Mothers Day to the Mother who continues to make sure that I eat and that I wear my Medic Alert bracelet (with little success).
And cheers to six years of life with diabetes. Toasted yesterday with Lasagne, Wine, Cheesecake, Chocolates, Coffee, and hopefully some Cannoli later this week.
I can’t wait to see what year seven will bring.
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.
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.
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.
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.
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.