Blue Light Discos and Chocolate Bars

aspen_bluelightdiscoMy daughter, Aspen went to her first Blue Light Disco this week!  The model has changed significantly compared to in my day but the objective remains the same.  After getting herself all dolled up she went off to school with her heart full of expectations.

New friends.  Music.  Dancing.

 

It got me thinking back to when I was that age.  I had been living with type 1 diabetes for about three years.  A friend through diabetes camps lived in country Victoria and a few times a year we’d visit each other.  I recall going to a Blue Light Disco with her and how our preparations were similar to Aspens, tinted with type 1 diabetes.

Snacks.  Night time long acting insulin.  Checking BG levels.

Having my friend with me made all the difference.  Finding a private place (which wasn’t the bathroom) to inject; we did that together.  Watching the clock for supper time; we did that together too.  Things got interesting when my friend pulled out a chocolate bar after supper and a night time injection.  My first thought was, “You must be low, lets sit down”.  But no, this was what her doctor had advised her to do; eat a small chocolate bar for every hour after she was awake after administering her long acting insulin.

That. Blew. My. Mind.

Chocolate… After dinner… Chocolate…

It was in an effort to prevent hypoglycemia.  The theory made sense based on the types of insulin we were using to manage our type 1 diabetes at the time.  What made it interesting was that my parents and I had never been told to do that.  We were of similar age, height, weight and fitness, we attended the same outpatients clinic and our parents took a similar approach to raising us with type 1 diabetes.

After that night my parents and I experimented with that method also.  We talked it through with my doctor and hatched a plan.  As with most things about managing type 1 diabetes, sometimes it worked and other times it didn’t.

Nevertheless, my point here is…

Peer-to-peer learning is an important part of life with type 1 diabetes.

Social media just makes it easier to find your tribe.

I can see clearly now…

A couple of weeks ago I made references to a friend’s blog, Alecia at Surface Fine.  To refresh your memories, the quote went something like this,

“Peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart.”  Author unknown

It resonated with me because only a few days before that I worked on a Diabetes Camps Victoria  (DCV) day activity for children living with type 1 diabetes.  We went to Bounce and it was nuts!  Absolutely nuts and completely brilliant!  I had a paradigm shift during the check-in process for the forty-strong crowd of children arriving.  Pumps were being disconnected left, right and centre.  Blood glucose levels were being shouted out across the tables.  Diabetes Nurse Educators were reassuring the parents and guardians that we all knew what we were doing and that their children were in good hands.  And all of this was being staged in a very small space.

Amidst all of this chaos my mind, body and soul went quiet.  Oh so very quiet.  And for a short moment I could hear myself breathing.  I could hear my heart beating steady and strong.  I felt in-balance, alive and satisfied.

Church sign

I realised that this is the stuff that has helped me get to where I am today.  The children in the room were a concentrated petri dish of diabetes peer support.  They had no idea they were offering it.  They had no idea they were receiving it.  But it was happening and it was beautiful.

One of the best thing my parents did just a year after I was diagnosed with type 1 diabetes was send me to the Royal Childrens’ Hospital (RCH) Camp for Children with Diabetes.  This was what was offered to patients of the RCH long before DCV ever existed.  Nobody was paid to run it.  A pediatric endocrinologist visited for half a day wearing board shorts to check our records books while we were down at Anglesea Surf Beach .  One Diabetes Nurse Educator stayed with us on site and was in charge of all things medical; from band-aid distribution to hypo management and insulin administration.  But one thing was unequivocally the same as it is today; the peer support was the stuff that really mattered.

That is why I have continued to be involved in that sort of stuff ever since.  I was fortunate enough to attend many camps as a child and teenager.  As an adult I moved on to become a volunteer recreation leader, camp coordinator and member of the management committee. I made a few risky career choices to work for a diabetes organisation.  And since having my children I have co-founded the Oz Diabetes Online Community so I can continue to get my fix of the important stuff.

Because that is the stuff that is important to me… and to so many others.

We stick together like… insulin receptors and cells?!

Insulin Interactions... and science stuff!Australian scientists recently made groundbreaking discoveries about the way insulin binds with proteins.  If you need to play catch up, here is the media release from The Walter and Eliza Hall Institute.

I am no boffin.  I understand what I understand to assist me with my diabetes management.  According to scientists, these discoveries will lead to developing improved types of insulin, including the possibility of oral administration.  What has been discovered is the way in which insulin uses the insulin receptor to bind to cells.  We have always known that his happens.  This is why insulin is administered to those who are deficient; because we know that it is required to transport glucose from the blood stream into cells for energy.  The how is what has been articulated; and this is very exciting stuff.

It also got me thinking of similar scenarios as I navigate my way through life with diabetes.  I know for a fact that peer support has been an essential part of my diabetes management.  Fortunately my parents recognised the importance of this and let me attend Children’s Diabetes Camps.  This is the current model, which differs quite a bit from what I experienced, but you get the idea.  It was here that I met some of my most beloved friends.  I am still very close with four of them who I met as an adolescent.  We all have type 1 diabetes.  And that is probably the only thing we genuinely have in common.  For example, one of these friends has become a professional triathlete.  Now, I love to swim endless laps until my little legs cramp up underneath me.  But to run or bike any great distance? Nuh uh!

The amazing thing is that we have supported each other through so many of life’s hurdles.  The teen years, career aspirations, travel, relationships, wedding days, pregnancy, childbirth, parenthood… and the list goes on.  My point is that from the very first diabetes camp, I realised that I simply had to be surrounded by other people living with type 1 diabetes.  Facing up to the same battles each day… each hour… and some days, each minute.

I continued attending Camps as a child, then volunteering as an adult, as well as participating in face to face support groups.  I have had the opportunity to work in the field of diabetes, and more recently I discovered the Diabetes Online Community, (DOC).  Thanks to the brilliant work of Cherise Shockley and the Diabetes Social Media Advocates , (DSMA,) there is a place online via Twitter where people living with diabetes gather and chat once a week.  There are many more initiatives to get involved in, but the online chat is where I started, and get the most out of.  This means that absolutely anyone can access peer support while living with diabetes.  The DOC, in my humble opinion, is a space in which each person who is diagnosed with diabetes should step into and try on.  You know… just to see if it helps at all.

My question is this.  What is the “thing” that binds us all together?  I know I take it for granted.  The connection that is felt as soon as I learn someone is affected by diabetes.  Even the parent of a child with diabetes.  There is some sort of metaphysical bond that forms.  Often not requiring any words to express understanding.  It could be a hand to the heart and an acknowledging smile.  Or a tweet consisting of nothing more than, “I hear you, my friend”.

So we know it is there.  I wonder if there will ever be a day where I will read a media release with the title, “The scientific benefits of participating in diabetes peer support proven”.

I might give it a bash.  I might try to define that very thing that we call peer support that can get me through the most challenging “diabetes moments” of all.

Like I said.  I’m no boffin, but I sure know about the value of peer support.  I know I wouldn’t be where I am today without it.

Absolutely no doubt in my mind.