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.

4 years with type 1 diabetes: Judgement Day

Judgement day

It has been 4 years today since my baby girls' was diagnosed with type 1 diabetes. I remember the day like it was yesterday. I remember the kindness of the staff at our local Hospital, I remember getting in and out of the ambulance as the bigger nearby hospital changed their minds about taking my daughter (for the best I know realise) and I will never forget the shock of not being able to travel with my baby to the closest major hospital in the ambulance – not knowing if she would make it. The ambulance staff were amazing and kept us as updated as they could and the Local Emergency team did everything they could to assist in a terrible and frightening situation.

Type 1 diabetes is a life sentence. For the patient and the family. It is also the start of a new life. One that involves a whole new language and a new level of politics.

My little girl is amazing. But I have also learned that so are many of my friends – new and old. So are my husband and my mum. Diabetes changes so much. Friends have learnt that I cannot be as reliable as I once was. My mum has become a life saver – giving me a much needed break as my husband works away, to help pay for the additional costs of managing type 1 diabetes that the government does not cover, and to give us a better life. I have made new friends through diabetes, who understand my life and my fears. But I have also found that my closest friends understand. They just do. I am really lucky to have them in my life.

I have also found that there is an unfortunate side to the support world. There are women who bitch, undermine and judge, often for their own gain. I probably should have expected it – but it really took me by surprise. Why would people do this? And how do they live with themselves? I have found that there are women who will actually go out of their way to bring you down and for this I am very sorry. For them mostly, as I believe that they must have very sad lives that they need to create pain for another.

Over the past four years I have learnt a love about myself. I have learnt what I really want to do. I have learnt how hard it is going to be to do it. I have worked at a fairly senior level in big pharma and for one of the biggest charities in Australia, but it will take more than knowledge to create the groundswell of change that is needed to create better lives for everyone with diabetes. Both type 1 and type 2. I have learnt that judging others does not help anyone and that only through assisting and creating change can we make a better life for everyone. One day I hope I will be a large part of that change. Until then, I will dabble at the edges, poking and prodding and trying to encourage people to understand each other.

My message for today… diabetes does not discriminate. For some types of diabetes diet and lifestyle may help – but it may not. You don’t know your future nor the future of your kids. Do not judge others and where you can, please lend a hand or an ear.

All Images: Copyright Invigor8 

There is no shame: know the symptoms

Tonight I am sitting at my computer waiting for news about the life of a little 7 year old Australian girl I have never met. This little girl was diagnosed yesterday with type 1 diabetes. What makes this story so heartbreaking is that she was not diagnosed until it was possibly too late. It appears that she visited her doctor four times over the past few weeks and her mother was told she had a virus and a UTI. All that needed to be done was for her GP to give her a blood glucose test. Whilst this is not a conclusive diagnosis, it would have shown her levels were high and she could have been treated before her blood essentially turned to acid and her body started to shut down. 

The diabetes community is always rocked when we hear stories like this. We now know what to look out for and know how easy the symptoms are to miss. We also know how little money is available to promote the symptoms of this chronic illness and how much confusion there is in the community between type 1 and type 2 diabetes.

Tonight I am asking you to please try and remember the symptoms of type 1 diabetes. Because of the common confusion between type 1 and type 2, I believe that parents may be loath to push with the doctor.  There is a degree of shame which is rained down on parents post diagnosis by those that do not understand that there is nothing – NOTHING that can be done to prevent the onset of type 1 diabetes. No diet, no exercise, no God (and certainly no herbs). Nothing will change the diagnosis.

Type 1 diabetes symptoms can include: extreme thirst;  constant hunger; sudden weight loss; frequent urination; blurred vision; nausea; vomiting; extreme tiredness; infections. If you think you or someone you know has these type 1 diabetes symptoms, call a doctor immediately, and drink fluids WITHOUT SUGAR to prevent dehydration and DO NOT be afraid to ask for a blood glucose test. It will only take a few seconds and could save a life.

I was very lucky with my daughter. She was diagnosed at 11 months of age. As she was still being breastfed and was so young, it took three emergency doctors to diagnose her, and while her life was in the balance for a few hours, she pulled through and is now a happy and healthy 3 (almost 4 as she will tell you) year old. With type 1 diabetes you never truly know the road ahead. Any night could be an all-nighter, with blood tests every hour. But at least you know. 

For more information about type 1 diabetes visit www.jdrf.org.au  or about type 1 and type 2 diabetes visit www.diabetesaustralia.com.au

 

For more information on our diagnosis click here or here.

I’ll take the small wins!

Parenthood really is like navigating a moving walkway, such as those they have in Hogwarts (yes, I am talking Harry Potter).

The challenges are there, whether you have a genius child or not. For me, it is balancing life with an amazing three year old daughter with type 1 diabetes and a lateral thinking, science based six year old son.

As most parents will tell you, my kids are fantastic! I love them to bits and could bore you to tears with daily clever/ special/ stupendous anecdotes. But some days your kids just amaze you. Today, as I was putting my three year old to bed, she decided to tell me about why she was so very lucky. Much luckier than her friends.

As I mentioned, my darling daughter (DD) has diabetes. She has had it since she was 11 months old and so does not remember life without it. Last week she met with our (likely) next local MP and when he asked what life was like with diabetes she said, “It is normal, just like you.” I was so pleased that she felt that way. On very, very rare occasions she feels sad about having diabetes (see Mummy, I don’t want to be broken, April 2012); however most the time she takes life in her stride.

           

So back to tonight – tonight she was a little low (which means her blood glucose levels are slightly lower than they need to be – very low and she can slip into unconsciousness, start to  lose brain function, and in some circumstances her organs start to shut down – but not when just a little low). I treat slight lows cautiously (as I don’t want her to become very high overnight – a high can feel like you have a horrible hangover, and in the long term can cause all sorts of damage to her organs). About 20 minutes later DD was still feeling low, so we tested her blood glucose again and she was even lower than before (still not dangerously low). So we discussed her food options: gummy bear (high GI) and 2 spoons of yoghurt (low GI) or ½ marshmallow and yoghurt.  Decision made (gummy bear – red), she sits there holding the lolly and delighting in how lucky she is to be able to eat such naughty food at bedtime.

Now the ‘healthy eating mummy’ in me thinks, “Hmm we need to have a conversation about this” and the ‘thank your lucky stars mummy’ thinks, “Wahoo, what an awesome outlook DD”.

For those friends with kids reading this, I apologize in advance as DD has planned all the friends she is going to tell about being able to have a red gummy bear before bedtime. She has also explained to me that they will understand, as she is special because she has diabetes. I love that she can be so positive about her disease. I love that she can turn back food because she knows it will make her high, but embraces the times she can enjoy sugar. I have no idea how long this will be the case, but I too will embrace her positivity.

My son wants to become a scientist and cure diabetes. But he also is independent and stubborn. My daughter is also stubborn (a good trait for a diabetic I believe), and has a love for life and people.  Since my daughters’ diagnosis I have learnt that in life we really cannot count on tomorrow being what we expect; only that today is what we make of it and we can try to influence positive changes.

Every day I try to be a positive influence for my kids. Sometimes I am cranky, but feed them a perfect diet for the day and ensure that they are on time for all activities (be it school, kindy, dance, rugby or swimming). Sometimes we are late but happy. At the end of the day we often chat about our day; what worked, what didn’t and what we will try and improve on. I have decided that it is best that my kids don’t think I am perfect. That they understand that it is ok to admit to making mistakes and that life is a constant learning experience.

But on any day, I most certainly will take the small wins. And tonight, DD’s pleasure over having a gummy bear at bedtime was a win!

What are your challenges? What do you discuss with your kids? Do you admit to mistakes?

“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.

What does it mean to live with type 1 diabetes?

November is Type 1 Diabetes Awareness month. If you have ever wanted to ask me a question about my cheeky monkey or her Diabetes now is your chance (well... really you can ask anytime...).

It isn't pink or sexy; it doesn't involve boobs, football players, or cute shirts (but we are always open for assistance for our cause).

It's about 2am blood tests, low blood sugars, high blood sugars, counting carbohydrates and giving 4 or 5 needles a day.

It is about the constant surprise of how resilient your daughter is. Of how her positive attitude makes her life seem normal and making her life as normal as possible makes everything you do okay.

There is always the fear of hypoglycaemia. And the need to plan every small activity due to the impacts on blood sugar control. But the rewards are worthwhile. In the short term they can be better moods and in the long term, a healthier life.

Our future will likely include our cheeky monkey learning to cope with not being invited to many sleepovers or play dates because other people may be scared of needles and 2 - 3 hourly blood tests. But that is okay, because we can have them at our home, and not everyone is afraid.

It's about carrying an enormous bag at all times - a complete chemist and food store in your handbag for all emergencies – fortunately big bags are in fashion now! It's about putting up with ignorant people who say things like "you're lucky its only diabetes", "don't you wish you had breastfed her as a baby" or “she isn’t fat?” But it is also remembering that you didn’t always know everything about diabetes, and frankly, wouldn’t that be wonderful to still be the case.

It’s about the heartbreak when your daughter was diagnosed. It’s about watching her sleep at night and hoping that she will wake in the morning. It’s about wishing it was you and not her.

It’s about waiting for a cure...

(Inspired by and partly adapted from Karina Caton and Emma Savage)