The "What If's"

I sit and ponder today as to what will be next? I have recently had a progression from my MS which has seen the sensation on the left hand side of my body now being effected. I can still do everything but what I think has effected me more now than ever is what happens if it does worsen again.

I have just returned from a theme park holiday with my family where we walked our feet off going from one end of the parks to the other and I caught myself looking at the screen for the new dinosaur roller coaster in Osaka Universal studios, it just so happened I was riding this alone in the single rider line so the thoughts were all my own with nothing to distract me. I remember the screen saying all the precautions about the people who they advise should not ride and all of a sudden I thought to my self one day that could be me. Maybe the central nervous system will continue to get attacked to the point of adverse immovability or even disability. My thoughts then grow to taking into account the "what if's" in life.

What if

• The above does happen? How do I put that on my family?
• What happens if I loose sight of management of my T1D and complications follow?
• What if through either MS or T1D I am not able to support my family?
• What if my daughter doesn't want to manage her T1D through out her teenage years and beyond?

This is only but a few but on the secondary side

• What if non of these ever happens?

I am very much a believer in living in reality and trying to make sure I don't live in a fairy tale world where nothing will ever happen. It can be a dangerous place to live sometimes as it takes living on a see-saw and trying to balance out constantly. There are bad days and there are good days but I think everyone can say that. What I think works best is to have what is possible in the back of your mind so that you can gradually accept what may be while you focus on what you are able to do and achieve.

If you do the opposite and focus on what may happen and have your current capability then the mental side of any chronic disease will play a big part of life.

Acceptance is key and even after 26 years I think there are days where you revert back to not accepting what you have but I suppose those days are less than the days that you accept and move forward and appreciate the strength that we have by having these diseases and living each and every day as best as we can.

My letter to the people who make the decisions for our country and citizens....

To the politicians who have the very difficult job of trying to make sure everyone in the country is happy,

I live in a minority and unfortunately being heard is like being an ant and trying to have a human stop stepping on them by yelling stop. That being said I think now is the time that we need to be heard and we need the ears of our government leaders so that life and the healthcare response can be made even better for others that become a minority by becoming a Type 1 Diabetic.

I have lived for 26 years with this disease and to tell you the truth even though the instance of diabetics as a whole has increased the instance of T1D's has only increased marginally compared to the Type 2 population however the burden of cost and access to the technology that will not only be able to make our lives easier but will also put less pressure on the public health system as it is shown that people that get to be able to use the latest technology have lower rates of diabetic complications which will put them into our hospital system.

I read online through social media about the people across the world who have multiple visits to the emergency department every month and I wonder if there was greater access to what they need would they be able to reduce that dramatically and live much better lives. I see that on average it will cost up to $6,500 per admission to hospital also. So in all if you were to stop at least 2 visits to the hospital per year, the cost of the technology would be accounted for.

In 26 years I have never been admitted into hospital for diabetic reasons. I put this down do making sure I sacrifice to ensure I have access to what I need. This means that my family and I do with out, it means that some weeks the budget is very tight, it means that I have to say no to my family when I should be able to say yes. It adds stress and pressure on top of the pressures of daily life which we all know are growing exponentially.

As a type 1 diabetic I know my daughter and I can manage our disease with a needle and syringe but you can also mange getting around using a horse and cart in a day where we can move a lot faster and with greater efficiency using a car, bus and motorbike. Why is is OK that the government sees it as ok to subsidize the syringes however not look into the technology that would really make a difference.

The technology I refer to is the insulin pump and continuous glucose monitoring system that allows for greater control and accuracy and in fact greater peace of mind. I say this as living with this disease does not only effect the individual with it but the whole family. It has people stay awake day and night not knowing what the next challenge is going to be, worrying if during the night when everyone is in slumber will the body choose to drastically drop the blood sugar which will cause the loved one to die. It seems drastic to say but this is reality. It wasn't that long ago that Type 1 Diabetes was a death sentence and in fact it is only in 2 generations that we are seeing longer life expectancy. When I was diagnosed I was told that it would decrease life expectancy but 10 to 15 years, Now when my daughter was diagnosed some 24 years later it is said that with good control and management it shouldn't shorten life span. I don't know about you but I want my little baby to be healthy and happy to well into being an old lady and even further.

We ask governments to take the initiative to not just look at what will make do but what will make lives of people living with chronic diseases better both now and well into the future. There may only be 125,000 people living with T1D in the community of Australia but to each T1D person there is a whole army of people behind them wanting to make sure they have access to what they need to make there lives easier in the battle against T1D.

Please consider as sometimes it is the minority's that genuinely require the attention to ensure we make our country a leader.

Why wouldn't you?

It is amazing to live in a day and age where medical advancements are coming quicker than ever. Technology as a whole is making it exciting to be alive.

• I grew up seeing the introduction of the VCR to DVD and now to online streaming.
• We have gone from having a fixed land line phone which you had to stand at the wall to talk to someone to now having your phone in your pocket any time of the day anywhere in the world.
• Computers have been introduced into homes and now your phone has more capability than computers that came out just 10 years ago.
• The internet has changed the world as we know it. Information is now at our fingertips and you don't even need to leave your home to do your weekly shopping.
• The world is becoming globalized.

This is only a brief touch on the amazing advancements in general life. What really amazes me is that we accept and adapt to these changes. We are connected to a device nearly 24x7, whether that is a laptop on your desk which then transfers to your phone when your out. We expect everything to happen now if not yesterday and the children of today want it even faster. 

With all this said when we are talking about medical benefits why are we even considering not moving to the most advanced technology we have at our fingertips for T1D management. We hear how the majority of people with T1D still giving manual multiple daily injections and testing manually through out the day and possibly never knowing about the peaks and troughs that can happen day and night.

Something that is even scaring me further is the lack of adoption from the medical fraternity. Even though it is slowly getting better I believe that a large reason why T1D's are not moving to the latest technology is the fear from GP's and Endocrinologists not to recommend making the move. This could be the fact that learning something new will add workload to their busy schedule or it could be that they think it is just to difficult to help manage their patient now that they would have more control and responsibility of their diabetes.

No matter what it is I ask you "Why wouldn't you?" Rather than "Why would I?"

Moving from multiple daily injections to the insulin pump, which is now Medtronic 640g with continual glucose monitoring is the smartest move I have ever made for both myself and my 5 year old daughter.

We are at the eve of going on a large overseas holiday and instead of stressing about how we are going to cope with our diabetes while away all we are stressing about is making sure my wife doesn't pack too much. 

Our A1c results have never been better and to tell you the truth in the last 17 months that we have been on the new pump we have not had any dangerous Hypo's at all. We have effectively eliminated them from our lives which is amazing.

People worry about having something connected to them but I also put it to each and everyone of you with T1D - "Do you have a SMART phone / mobile phone?" If you do then I would also say that that it is probably on or close to you through out the day and the amount of people who have to look at their social media first thing and last thing in the day is probably more time than I look and manage my pump on a daily basis. 

I suppose what I am saying is that we need to put our health first and we are in a day and age where technology is making a difference each and every day. Old methods work but that would like going to an old wired telephone that is attached to the wall in your home and expecting that to be enough for all of your communication in this day and age.

Why wouldn't you?