Shut UP!

I am not a tightrope artist, yet I walk a tightrope every day. I am no juggler, yet I can juggle a million things all at the same time.  I get dizzy easily and can not tolerate spinning around without feeling sick, yet I ride a roller coaster often. I am not a doctor, yet I can treat my ailments all by myself. Mathematician I am definitely not, yet I complete complex formulas multiple times a day. I am a very open and sharing person, yet I keep many things to myself that nobody else would understand. I am a person living with type 1 diabetes.

It may seem to people who don’t live with diabetes one of two things.

One, that it is an easy and simple thing to live with. “A bit of sugar”. A “just eat healthy, exercise and take your insulin and she’ll be right” kind of thing. A thing that once the initial diagnosis has passed and everyone else has got back on with their own lives, free from thinking about every morsel of food you put in your mouth, free from watching countdowns on beeping machines dozens of times a day to see if you can eat, exercise, sleep, breathe….that it is no longer an issue.

To the person living with it, it does not really ease into the background. Sure, it gets easier. Sure you learn a lot, about your body, your diabetes and yourself. You can get on with life and live a good life, a happy life, an adventurous life, an enviable kind of life. But, it is not simple. It is not easy. And it most certainly is not in the background. Getting on with life does not mean getting away from diabetes. It simply means you have worked out how to have a life that can have diabetes in it.

Or, two, it may seem that all the person with diabetes THINKS about, is diabetes. All they TALK about is diabetes. They are ALWAYS posting things on facebook and Twitter about DIABETES. Social Media has created a DOC (or diabetes online community for those not in the know) which connects people with diabetes across the world. People who don’t have diabetes may think “for god’s sake, is there nothing else in your LIFE?”. They may be turned off by the status updates asking friends and family to donate to one of the many diabetes charities (my own included). May feel horrified by the posts about children or young people who have died from their diabetes…..or may feel angry and say “serves you right” to the overweight person with type 2 diabetes as they “caused it themselves”…. ignorance gone mad.

Sadly there is a division between type 1 and type 2 diabetics on this front also, with misinformed type 1’ers blaming people with type 2 for causing all of our problems, for making the world think all diabetes is caused by eating to much sugar and that as a person with type 1 diabetes we did not cause our diabetes, we are somehow better and more deserving. This saddens me more than anything. Having worked in diabetes for over a decade I now understand the complexities behind why people get diabetes – all types – and the complexities behind overweight and obesity (which by the way is not always a cause of type 2 diabetes, it is just one risk factor).

And I can tell you now it is NEVER anybody’s fault they get diabetes. And there should be no blame.

Sometimes I do feel like people around me don’t have any real idea about what my life is like with diabetes. Sometimes I do feel like all I see, hear, talk and think about is diabetes. It is my life, my work and my passion. I did not ask to get this disease. I do not have to like it. But I can sure as hell harness it to become something that matters in my life and do something that matters because of it.

And if you don’t like hearing about it, log off.

 

 

Is waiting what life is all about?

Waiting.  I sometimes feel like I spend my whole life waiting. Waiting to grow up, to get my license, to leave school, leave home, leave town. Waiting to get out of bad relationships and in the the “right one”. Waiting to get married, to get pregnant, waiting for babies to be born. Waiting for kids to get up, get dressed, eat, brush their teeth, go to bed. Waiting in lines, on phones, at check outs, in car parks…. waiting for the weekend (so I can spend time with the kids), waiting for the weekdays ( so I can get rid of the kids and focus on work – what is that about?). Waiting for people on the phone, for the right help, for someone to help me. Waiting for browsers to refresh, for applications to work on my computer (or not), for the latest software, latest phone, latest social media app. Waiting  to hear about whether our charity won a grant or not, if sponsors are back on board, or not, will we survive? Waiting for my kids to be toilet trained, sleep in their own beds, start school, finish school, get home safe. Waiting to go on holidays, waiting to get home again. Waiting for my blood glucose to go up, to go down, to settle down, waiting for a cure…….endless waiting.

People have said I am “impatient”. So what does that mean? That I am not good at waiting? Given the amount of waiting I do, I beg to differ.

While waiting for an application I was trying to edit my Facebook pages with to work today, over and over again, with multiple browsers open on multiple tasks all at once, it got me to thinking about waiting.

Is waiting just the fill in time between what we DO in life? Between where we are and where we want to be or go? Or is waiting the point of it all? Given the amount of waiting I do, should I be seeing the “waiting” as my life? Or perhaps this is my calling? Maybe I was BORN to wait? Given I was a waitress as a teenager and young adult and in fact quite enjoyed waiting on people, maybe this is the case.

Given I live with type 1 diabetes and spend hours and hours of my life waiting for results on blood glucose machines, waiting for my blood glucose to go up when low, go down when high, for my insulin pump to need changing, for doctor’s appointments, in doctor’s rooms, for the complications to set in, to get worse, for my diabetes to be quiet and GIVE ME A BREAK….I am thinking that perhaps, yes, waiting is what life is all about.

So here is my challenge. I am going to see waiting as an opportunity, not a pain in the arse. Instead of feeling rushed, stressed, impatient – each time I have to wait, for whatever it is – I am going to say “Waiting is my life. This is what it is all about. This is not the in between stuff, this is it” and I am going to damn well like it.

Oh, except the waiting for a cure bit – that bit I think I am a little bit over. 33 years is a very long time to wait and I am not sure anyone would stay in line for that long.

Happy waiting.

Finding a voice – diabetes voices unite

When I started www.diabetescounselling.com.au all those years ago in 2001, there were not many voices in the online space for people living with diabetes. The Internet was still new and in Australia, the wonderful Type 1 Diabetes Network http://www.d1.org.au (then just Reality Check) was the loudest voice I could find and a fine one at that. But at this time in their history, their voice was very specifically for people with type 1 diabetes who were 16 – 40.

Online counselling was not heard of in Australia and the idea of people with diabetes needing support and counselling (other than learning how to prick their finger and use insulin) was rare. So our adventure into the online space offering free counselling and support to people with diabetes was interesting, scary and somewhat mad!

Yet here we are in our 10th year. As we have evolved over the past decade down here in Australia, the DOC (or diabetes online community for those  not in the know) has grown at a very fast rate – almost as fast as the Internet itself.

What I have noticed is that in places like America in particular, there have been many champions who have lead with their voices, their heads and their hearts, such as TuDiabetes http://www.tudiabetes.org  Six Until Me  http://sixuntilme.com/ Diabetes Mine http://www.diabetesmine.com/ and many more. As a result there are a multitude of amazing peer support sites, bloggers and the like in the US and a strong voice across social media in particular.

In Australia, the growth of the voice of people with diabetes in the online space has been somewhat slower, despite the growing recognition of the importance of peer support, a shared voice and mental health support.

What you tend to hear down here in “Oz” is the voice of diabetes health care professionals, pharmaceutical and diabetes device companies, research groups and major “consumer advocacy” organisations. What you hear less is the actual voice of the people who live with and are affected by diabetes each and every day.

Groups have sprung up on places like facebook and more voices are being heard, yet it is not enough.

So our challenge is to get as many Australian voices of people living with or affected by diabetes heard as possible. This challenge starts now and begins with this blog and other forums and chat rooms at Diabetes Counselling Online, facebook, YouTube and as many places as we can place ourselves – most importantly we want people with diabetes and their loved ones to add their voices to the conversations in word, video and pictures.

So many people feel alone with their diabetes. Isolated. Guilty. Scared. When you hear someone elses voice and what they are saying makes sense you feel better. And you feel better knowing that someone else feels better because of what you shared.

Sharing our voices helps.

Take the challenge and let’s hear your voice!