D-Blog Week – topic 4 – Fantasy Diabetes Device!

Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?

 

I have not thought about this before. I am not sure why.

Perhaps I have merrily gone about my 33 years of life with diabetes without wondering about devices, rather accepting what there is and getting on with using it. I know when I got type 1 and had to test my urine I felt like a leper. I know when the doctor said I now had to do blood glucose testing I rebelled, no I quite clearly stated, “I AM NOT DOING THAT”. But I did.

I know I was intrigued and quite pleased when moving from a needle which required attaching to the syringe, to an all in one syringe and finally, a pen for my injections. I know I have rejoiced each time blood glucose checking got easier, smaller, faster. And I know I worried, stressed and feared starting on a Insulin Pump but 11 years down the track would never go back. I also know that living life reliant on devices, on batteries and things that can break down or require refilling at the most inopportune moments is a life filled with stress.

But thinking about a fantasy device? I am not sure I have ever done that.

So for today’s topic, the first thing that came to mind was that I would like to say that my fantasy diabetes device would have to be quite simply a working pancreas. That is all. Is that too much to ask for? A pancreas that knows exactly when and how much insulin to release? A pancreas that does not involve wearing a device clipped to me 24/7 and cannula and line changes every 3 days? A pancreas that does not BEEP all the time, that does not require me to prick my fingers 15 – 20 times a day to tell it what to do, that does not require priming, that does not require me to take a 10 kilo handbag everywhere with spare pump supplies and needles “just in case” and that does not feel incredibly uncomfortable when I roll on it during the night?

Or how about a pancreas that does not get it wrong, that does not over or under shoot, that does not make me swing from trembling sweaty low, to desert mouthed, foggy brained high.

In short a pancreas that WORKS.

This is not a whinge. I live a full, happy and fruitful life despite diabetes and I am mostly positive. I am certainly very grateful for all the new developments in technology that enable me to live this life.

But a working pancreas – now that would be something to see in my lifetime. 

And at the moment – that would also be a fantasy.

Cure or remedy?

The following may offend some people. But I am going to say it anyway, because it is what I think and believe and hopefully may help some people to feel better, more peaceful and accepting of their lives with diabetes.

When I was diagnosed in 1979 we were told there would be a cure for diabetes for sure within the next 20 years.

Well 1999 came and went, without the said cure…..and so did 2000 and 2001, 2002, 2003, 2004……..and here I sit in 2012 with no cure for diabetes. However there have been amazing advances in our understanding of diabetes in all its forms and in options for management.

When I got diabetes I had to inject pork insulin, which was not brilliant and ruined my legs with lumps and bumps; and do urine testing. Blood glucose monitors followed close behind but they were massive and took ages, with many steps involved to get them to work. Here we sit today with monitors that can connect to your iphone and take 5 seconds to give a result and I use a brilliant little Insulin Pump named “Pumpy”.

In 2001 I started working in diabetes. I was excited, amazed, shocked and overwhelmed when attending my very first diabetes conference, at all of the pharmaceutical companies involved in diabetes and at all the money poured into research. I am now an old hand, having attended dozens of conferences both in Australia and Overseas. I am now chuffed to say I am asked to be a speaker at these conferences and am working on research myself.

The research I am involved in however is a little different. I chose to dedicate myself to making life for people living with diabetes a little easier, a little more peaceful, a little less overwhelming. I chose to find ways that people can live WITH diabetes and still do what they want to in life.

I get why people, in particular parents of kids with type 1 diabetes, talk about the “fight against diabetes”, the “battle” they and their kids go through each and every day, like a knight going in to battle a dragon. I live with this myself and as a Mum of  three boys have imagined millions of times how I would cope if one of them were to be diagnosed with diabetes – which is of course on the cards given their slightly increased genetic risks.

What worries me is when I see people just talking about life with diabetes as a “fight”. A “battle” we are in, with “winners” and “losers”. And when the total focus is on finding a cure, rather than on learning to live with and maybe even embrace, diabetes, how does this make a person feel?  If a child for example believes there will be a cure and then life will be brilliant, do they get a chance to see life can be brilliant right now? And what happens to their emotions when this cure does not happen in 5, or 10, or 20 years time? How do they deal with that?

To me, living life like a battle is no way to live. It speaks about not being able to accept diabetes, not being able to make it a comfy part of life. But to face up to it like an enemy to be taken down. In reality those of us living with diabetes have to do exactly that – live with it.

The thing is, I don’t think we are close to a cure for diabetes. And “diabetes” is such a broad word for so many complex conditions. If we are talking about a “cure” for type 2 diabetes for example, some people would say there is a cure – lose weight, move more and presto – cured. I know this not to be true. You can not be cured from type 2 diabetes. You can however prevent it happening in some cases, slow it down in some cases and yes, even get it so well controlled with healthy lifestyle changes that your blood glucose goes back to non diabetic range and you no longer need medications and insulin – but don’t trick yourself, it is not a cure in the true sense of the word.

In terms of type 1 diabetes – we are way off. We have all sorts of theories and ideas and some make great sense. One of the biggest barriers is the autoimmune element – if we cure someone, how do we then switch of the autoimmunity response?

Billions of dollars are invested in diabetes research and pharmaceuticals. Can you imagine how many people would be out of a job if they did find a cure? The mind boggles.

Call me cynical, but I for one would rather focus on the new and emerging technologies to manage diabetes, so that I can have the best possible quality of life with diabetes. I would rather focus on communicating and connecting with people who live with this tricky condition so that we can share the load. I would rather be a person living with diabetes than a person “fighting” diabetes. I am not calling for research to stop or trying to put down the very real feelings people have about being in a battle. I have many days where I feel confused, frustrated, burnt out, worn down, sad and scared due to my diabetes. It does not mean I don’t wish there was a cure. It does not mean I am happy I have diabetes. It does not mean I don’t have  bad days, weeks or months. Of course I support all of the researchers working hard to find this elusive cure. Of course I feel deeply for the families out there dealing with diabetes every minute of every day – that is why I do what I do. I am also very grateful for all the work done by the Pharmaceutical industry to bring us better products, tools and platforms to manage our diabetes.

But you know what? It also means I for one am not entering in to a “fight” or “battle” with my diabetes. I am trying to make it my friend, not my enemy. I am trying to just live with it and understand this is part of who I am.