Life, but not as you know it

• Focus 24/7
• Low GI
• Carb counting
• Health and fitness focus
• Long term benefit over short term pleasure
• Just do it!
• Believe in yourself

Sometimes I think I should become a personal trainer or life coach. But I am a mum to a child with type 1 diabetes and this is my daily mantra – both for myself and my family. We have all embraced a healthy lifestyle – which for the most part makes managing diabetes easier. But it isn't easy.

Freya is now 7 years old. She was diagnosed with type 1 diabetes nearly 7 years ago. Her pancreas stopped working properly and that was that. There was nothing we could do to change it and nothing we could have done to prevent it. Type 1 diabetes has no cure and is not preventable in anyway.

Each night for the past 7 years my husband, mother or I have tested Freya at around 11pm, 2am and again before 5am. We do this as for people with type 1 it is possible to have unexplained high (hyperglycemia) or very low blood glucose levels (hypoglycemia) overnight. The impact of long term high blood glucose levels can mean loss of limbs and all sorts of serious medical conditions (such as loss of sight, heart or kidney failure). The impact of low blood glucose levels is more immediate – in mild cases it makes you feel drowsy, confused and often very hungry. In severe cases it can cause unconsciousness, brain damage, heart failure or death – sometimes within a few hours.

So whilst some people have very few hypoglycemic (low) episodes at night, some people (and more often kids as they are growing rapidly) have them more often. The risks are real and something that adults with type 1 and parents, partners and carers of people with type 1 diabetes have to live with every day.

So, yes, I know, all of this sounds very dramatic. And it can be. Children and adults die from complications due to diabetes every week in Australia, but most live happy, healthy and fully functional lives.

What we would love though is a cure. We would also love a good night's sleep on a regular basis.

There is technology available that could help people with diabetes, though at great expense. The government is considering subsidising up to 4000 children under 18 in a pre-election promise which will hopefully be put through parliament in the coming months. Whilst this is a great start, there are currently over 120,000 people in Australia with type 1 – so that is a lot of people who are not going to be helped in any way.

That is also 120,000 people and their families who would dearly love a cure. Whose lives have been forever changed by a genetic fault – that still has scientists baffled as to its cause.

My daughter has had at least 5 injections of insulin a day; over the past 7 years that's over 12,000 injections. She has also tested her blood (via her finger tips) up to 10 times a day in the same period (over 25,000 finger pricks to draw blood). She is 7 and does this to stay alive. Sometimes she gets frustrated, but mostly just gets on with it.

My daughter is amazing and truly an inspiration for me. She is the reason that each year, for the past 6 years, that I have organised a fundraising or awareness raising event for diabetes. I want to find a cure. But if I cannot find a cure, I want Freya and all people with diabetes to live in a country where people don't judge them for having diabetes. Freya is smart, healthy, super fit and fun to be around. She can and will do whatever she wants in life.

Diabetes can be a life threatening and life shortening disease but if we all band together we can make a difference. Please donate if you can or simply share this to help raise awareness about diabetes.

I am organising the Sunshine Coast JDRF One Walk at Cotton Tree Park on the 28^th August 2016. Registration is from 8.30am and the walk starts at 9.30am (there are 2km and 5km options available – and well behaved dogs on leads are welcome). For more information click here

To donate to the One Walk click here

To donate to JDRF click here

To donate to Diabetes Queensland click here

I will be updating my blog more regularly so please follow by email or check out my instagram page (@invigor8) where I share new blogs and images.

“Mummy, please fix my pancreas”

For the first time today my little 3 year old begged me to remove her “diabetes”. She asked that her pancreas not be broken – over and over again.

In so many ways my daughter is so much older than her 3 years. We can have conversations about what it means to be high or low. She understands what her blood glucose levels should be and can read them on her monitor. She is starting to test herself and discuss the carbohydrate content of the foods she eats. We also discuss fats, sugar and protein. We talk about exercise and why it is important and also how it will impact her blood glucose levels. Before today my daughter had always soldered on. Very occasionally she would cry at a needle, but almost always she would take her 5 plus needles each day and 2 – 3 hourly blood tests in her stride.

She was a little high this afternoon and I was tired and in a cranky mood too – so maybe that instigated her self analysis. “Why do I have diabetes? Did you have diabetes when to were 3? Why do some people have type 2 diabetes? Why can they get better and I can’t?” She hit me with question after question. Most I couldn’t answer with anything better than, I just don’t know. When she asked me if one day her pancreas would get better it just broke my heart. In all honestly, I just don’t have enough faith in a cure. Not enough money is spent on type 1 diabetes. Not enough people understand what it means to have type 1 diabetes. Kids and adults with type 1 have an invisible disease to a large degree. Most of the time no-one knows they have type 1 diabetes.

I have shared with you a day in our lives before, my fears when my daughter is sleeping (that she won’t wake up), the constant monitoring of food, blood testing and needles and the common questions about why she has diabetes (“Did you feed her lots of lollies when she was a baby?” or my favourite “Don’t you wish you breast fed her?”). As time goes on I am getting better with the questions. At least people are interested enough to ask and this gives me a chance to explain type 1 to one more person – and maybe that one person will share with someone else.

If I believed in God I would pray for a cure, but all I can do is ask those who have a spare few dollars to donate to the JDRF (www.jdrf.org.au). If not today, next week, next month, next year or even 10 years from now. I would love for there to be a cure one day. In the meantime, small technological advances make life easier for those with type 1. And technology is something I do offer my daughter for hope – that and my 100% support. There are promising medical devices overseas that hopefully will reach Australia and be funded by our government.

We take it one day at a time – but today was a tough day emotionally for all of us.