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.

Monday Message

And Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

 

 

Insert apology here… I know I’m a few days late but I am super keen to be part of DBlog week again 🙂

This morning I received a notification that I started my blog, 1 Type 1 exactly four years ago today.  My reasons for blogging were very different back then, (and I may have still giggled when I heard people say, “blogging” because it just sounded so weird!)  In these four years my experience with and perspective of the diabetes online community, (DOC) has evolved.

In recent times the Oz Diabetes Online Community  , (OzDOC) has reminded of the value of learning from others. Even as I typed that last sentence I acknowledge how ridiculously rudimentary it sounds.  However, it was only after I was able to participate in chats again that this became apparent.  For over a year I was operating OzDOC by myself.  This meant that I planned the topics, engineered the questions and moderated the chat every week, (and took care of a whole lot of other bizzo in between).  I got so used to sitting in the drivers seat that I forgot why you boarded the tour bus as a passenger.  I was absolutely committed to providing the forum for the OzDOC community to be a hub of diabetes peer support but I forgot that I needed and wanted to be part of that interaction too.  I wanted to share my story and have positive impact on the lives of others with diabetes.

Thankfully there are eight people who are willing and able to help run our weekly chats now.  They are Andy , Ashley , Bruno  , Frank , Glen ,  Jenna , Sophie and Tony .  I owe them a lot.  Their dedication to our community means that we all get to participate; to give and receive diabetes peer support.  This happens in many forms but the one that is most important to me is the sharing of experiences to enhance knowledge, understanding and empathy of life with diabetes.

So I’m here to continue to share my story thought blogging again.  (Insert childish giggle here!)

My thoughts.  My views.  My experiences.  My feelings.

The ABC’s of diabetes & OzDOC

OzDOC LogoLast week I moderated the Oz Diabetes Online Twitter chat, more commonly referred to as the #OzDOC Hour of Power!  (A Twitter chat affords Twitter users the opportunity to engage in conversation with each other and usually emerges from a new community that gathers around a particular subject.  For us it simply is diabetes.)  When it is my turn to moderate I like to have a bit of fun every now and again.  I’ve been known to mimic popular game show hosts and keep it entertaining while providing an opportunity for people affected by diabetes to connect online.  So this time around we played the ‘ABC’s of Diabetes’.  From the OzDOC handle, I tweeted the letters of the alphabet and participants were asked to respond with the first diabetes-related word that came to mind.  You can access the full transcript of this chat here.  So here is the first response to each letter…

A = Alcohol – keep in mind I am a mother to a T1 teen

B = Basal and bolus (I awarded bonus points  for that one!)

c = D-camps (The tweeter was referring to the Diabetes Camps a lot of us are involved in)

D = Drudgery

E = Empathy

F = Friendship

G = Guidance

H = Hope

I = Insidious

J = Journey

K = Ketone

L = Love as in DLove (which I often hash tag as #dlove)

M = Mother

N = Never-ending

O = Ownership

P = Persistence

Q = Questions

R = Reality

S = Support

Insert bonus tweet here from someone who combined the letters S and T to come up with “Type shaming”.

T = Tests, endless tests

U = Understanding

V = Victory

W = Wisdom

X = X Factor – you’ve all got it

Y = YOU – all of you

Z = Zzzzzzz, there’s never enough of them with D

What I found most comforting was that there was very little ‘medical chat’; most of the words focused on or represented the people, the connections, the feelings… what matter most to those of us that live with diabetes every day.  That is why I am active on social media.  Not for medical advice, but for diabetes peer support.  A giggle here, a virtual hug there… it’s what gets me through battles with the ‘diabetes beast’.  Check this website out for an example of how our chat could have gone… but didn’t!

Here are a few other personal highlights from this particular chat;

– One of our participants, @TetheredExpat was tweeting from the back of a taxi in Guangzhou, China.  Apparently using 3G and VPN can break through any fire wall!

– Cupcakes and coffee were mentioned; the universal Diabetes Online Community foods.  Please don’t ask why because I have know idea!

– @RenzaS and @Sophie_Maxwell felt the need to use the fbomb when we got to the letter F.  The beautiful thing was that no one corrected them or told them off.  I imagine that was because we were all thinking the same thing.  However, as the moderator I did have to put them in the naughty corner for a little bit!

– @shootinstarslou freaks herself out with Dr Google!  I labelled that the tweet of the night by far.

– There were several tweets dedicated to regular participants who weren’t there on the night, including #dwingman @ashiekitty and #80smusictragic @STroyCrow

– @CoastCath outdid herself with the speed, wit and tenacity at which she tweeted her responses… some may say that she rehearsed it!

All in all it was a great chat and I strongly encourage anyone connected with diabetes to #lurk or #spy just once.  Our Twitter chat happens every Tuesday night at 8:30pm AEDT for one hour.  All you need is a Twitter account; you don’t have to be an active user.  Who knows what might happen.  You might just find yourself some #dlove.

keep-calm-and-join-ozdoc

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.

Diabetes, and strategy, and politics… oh my!

Australia cup cakes

Yesterday International Diabetes Federation President, Sir Michael Hirst and Diabetes Australia CEO, Professor Greg Johnson addressed The National Press Club. A lot of statistics, (present and projected) were thrown around to help illustrate what a problem diabetes is for Australia.  A new document was launched, “A National Diabetes Strategy and Action Plan“.

“The purpose of this document is to provide the incoming Australian government, after the 2013 federal election, with a clear framework for a new national strategy for diabetes and a five year action plan.”

Four goals were outlined in detail:

“1. Prevent complications – optimal management and earlier diagnosis

2. Prevent more people from developing type 2 diabetes

3. Reduce the impact of diabetes in pregnancy for mothers and children

4. Reduce the impact of diabetes in Aboriginal and Torres Strait Islander (ATSI) Australians

5. Strengthen prevention, care and cure through knowledge and evidence”

For me these sorts of documents are much like the elusive cure for type 1 diabetes being five years away.  I first heard that at the time of my diagnosis over 25 years ago.  I’d love to get excited about all the changes they may bring to my life, but I’m jaded and I don’t hold out hope.  Don’t get me wrong; I remain positive and grateful.  I just don’t choose to sit around, twiddling my thumbs waiting for my “diabetes life” to get easier.  I would be relying on people who are far removed from me.  In this instance it would be federal politicians.  And that’s just not how I roll; I take care of myself.  I am my own responsibility.

Enough said.

However, I like that the notions of  care and support are increasingly finding their way into these documents.  The effects that living with diabetes has on one’s mental health is being recognised as an important issue that must be addressed.  For example, Action 6 of Goal 1 states, “Stop discrimination against people with diabetes and put an end to the social stigma surrounding diabetes”.  Music to my ears!

An issue close to my heart was also addressed in Action 2 of Goal 3, “Ensure optimal management (pre-conception to post-pregnancy) of pre-existing diabetes in pregnancy…”.  I know how fortunate I was to be able to access the care required to produce two amazing children.  I know others are not as fortunate as me.  This definitely needs to change.

Action 2 of Goal 5 touched on the need for a world-leading and comprehensive national research agenda inclusive of the behavioural aspects to living with diabetes.  It may be a small blip on the screen at this point in time, but it’s a blip all the same.

If you haven’t been able to glean my main point out of my ramblings, it is this…

DIABETES PEER SUPPORT MATTERS.

DIABETES PEER SUPPORT MAKES A DIFFERENCE.

DIABETES PEER SUPPORT SHOULD BE ON THE AGENDA.

Get it?  Got it?  Good!

PS. I learnt a new word whilst reading this document; epigenetic.  Sounds really good when you say it out loud too!