Last Night I Fell Apart

Points were being scored all day.

I have an imaginary scale in my head when it comes to my children’s health.  Anything that closely resembles a symptom of type 1 diabetes gets a point.  Unfortunately several symptoms of type 1 diabetes are also symptoms of other ailments.  The way I moderate this is if the point score stays under four or five across a day or so, I can control my anxiousness and resist the urge to pounce on my children with a blood glucose meter.  Anything above this and I start to feel an impending sense of doom; my own private hell which I have never been able to articulate with words.

Yesterday I had a ‘seven’ with my son, Jarrah.  The final point was scored in the early hours of this morning and I fell apart.  In an instant we went from a quietly slumbering household to lights, noise & panic.  (Even BobCat didn’t cope well with the unusual level of activity.)  My husband & I grimaced through doing a blood glucose check on Jarrah.  Unfortunately he thinks that finger pricks cause pain that never, ever goes away.  On some level I agree with him; I am still in pain after all these years.

The screams of terror that filled the room as I pricked his little thumb opened a vault of emotions I keep buried deep: so very deep.  Ordinarily it stays sealed because I know there is nothing I can do about either of my children getting diagnosed with type 1 diabetes.  I have acknowledged my fears and worries about this possibly happening and that is all I expect myself to do.

The vault was opened last night and I fell apart.

It wasn’t dramatic.  I had a short, intense cry after everyone was tucked up in bed again and then I went numb.

My life with diabetes isn’t that hard.  I have everything I need to stay alive.  My quality of life doesn’t rely on much that is out of my control.  I don’t really care whether people use the right language around me, or whether a public awareness campaign is done well.  The world is full of glitches and quibbles and I decided long ago to walk my own path to happiness and this includes my approach to living with type 1 diabetes.  Despite living a life free of religious allegiance, I often think of the first verse of The Serenity Prayer my Mum cross stitched and hung in our family home when I was young.

So one would think that if one of my children got diagnosed with type 1 diabetes I could easily apply the same logic.  Lead by example.  Show them how to take responsibility for their own health.  Teach them about the right time to advocate for their rights, and those of others.  Help to minimise the impact type 1 diabetes may have on their lives.  Allow them to enjoy their childhood.

Practically I can handle that…

But what stirs me, makes my heart ache and renders me unable to express myself is that there is no one else to blame but me.  It is my fault; their risk of being diagnosed with type 1 diabetes is greater because I have it.  Albeit a small percent, it is still there & it is more than other children they are surrounded by.  I’m really not sure whether my feelings differ from those of my Mum; I’ll never be able to have that conversation with her.  All I know is that there was no diabetes in my family before I was diagnosed and that’s a responsibility I simply cannot assign to anyone else.

I take on blame, feel guilt and go numb in insurmountable and unsolvable amounts.

I have not granted myself the serenity to accept this thing that I cannot change.

So for now, that’s why I want to be the 1 type 1.

jarrahcarbg

 

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.

My 30 Year Diabetes Anniversary; Who Owns My Diabetes?

After living with type 1 diabetes for thirty years, one would think ownership is not the issue that stops one in their tracks.  But it has for me today on my 30th Diaversary.

When I was diagnosed it was assumed to be my parent’s responsibility.  The paediatricians, diabetes educators, dieticians and school staff only spoke to my parents.  The pathology results were communicated to my parents, even though the blood was drawn from my arm and I knew why.  My parents were asked for my log books or food diaries, even though I was the one who painstakingly recorded what I ate and ruled the lines between the dots on the blood glucose level graphs.  My parents were asked how I was, even though I was the one feeling the emotions and living the experiences.  The teachers at school would ring my Mum if there was a birthday to celebrate, even though I knew how to substitute an exchange in my lunch box for a slice of cake.

I am employed by a diabetes organisation, I voluntarily run an online community for people living with diabetes and I live with type 1 diabetes.  There are very few places in my life where diabetes doesn’t present itself, whether I want it to or not.  This gets confusing and exhausting and I am constantly questioning my value.  I have had trouble ascertaining whether I am good at my job and my volunteer work because I have type 1 diabetes, or because I have studied in the appropriate areas and have a good set of skills and abilities well suited to these roles.  I am not sure whether people want to befriend me because they assume, “I get life with diabetes” and that feels safe for them, or because they are attracted to me as a person and want to get to know me.

I have ended up feeling used for the chronic condition I live with every day.  What has been viewed by others as an asset is the very thing that has the power to make me crumble at the knees out of defeat and isolation.  Type 1 diabetes steals time from my life by crippling me with episodes of hypoglycaemia and hyperglycaemia.  It depresses me with thoughts of my long term health prospect.  I feel paralysed and unable to express myself or share my experiences due to the fear of being judged or offending others.

I have unknowingly been giving my power away.

At times I have fantasised about running a pilot version of my life during which I was never diagnosed with diabetes just to see what might be different.  How life would feel: living free of diabetes.  My profession, my friendships and my hobbies: what would they be without the influence of diabetes?  Then I come back down to earth and realise that I actually can, (to a certain degree) live this way with the power of reframing my perspective.

I am going to claim back my diabetes.

Health professionals have influence over what management regimen I use.  The federal government, the Therapeutic Goods Administration and pharmaceutical companies have dictated which drugs and equipment I have access to and how I can use them.  For a long time I have accepted this and acted accordingly.  I will always have respect for their expertise and the processes they administer, whether they act on my behalf or not.  But they don’t own my diabetes or my health.  I do.

With the guidance and support from my tribe, my endocrinologist, and my manager at work, I have made some monumental changes to the way I manage my type 1 diabetes emotionally, clinically and professionally.  For the first time in my life I am not white-knuckling it through with blind hope that the results from the latest change will stick and I can eventually relax.  I am relaxed and I finally feel like what I am doing, and more importantly how I am doing it, is permanent.  I feel a sense of pride when I reflect on how I have made changes that are yielding results I have only ever dreamed of achieving in the past.  I am achieving health goals, accessing technology, managing the conflict of interest a person living with diabetes encounters when they work and volunteer in diabetes, and most of all the stress is slowly but surely evaporating.

I own my diabetes.  I may run out of breath every now and again for the effort it takes, but I have stamina and I plan to be doing all of this well, and for a very long time.

https://www.youtube.com/watch?v=GKSRyLdjsPA

My Abbott FreeStyle Libre Experience!

This is not new news!  Abbott’s flash glucose monitoring system, FreeStyle Libre was released to the Australian public last week.  You can find out further details and order your very own right here   if you haven’t already!  If you dig a little bit deeper online you will find blogs reviewing the product from across the globe.  It is a new technology for Australians but people in the UK and Europe have had access for quite some time now and there is a lot of consumer experience to learn from.

I was part of a pre-launch event and trial sponsored by Abbott Diabetes Care and managed by Weber Shandwick.  I was given the product two weeks prior to the official market launch to assist with the associated media activity.  My experience was used in radio and print media to help people better understand what the real life application of the product is.  (Please note I wasn’t paid for my comment, nor was I obligated to report about the product.  Participating in the radio interview, the newspaper article and writing this blog was entirely my decision.  I am expressing personal views and not those of Abbott Diabetes Care.)

Here is the article that appeared in the Geelong Advertiser on Saturday 4 June, 2016.

20160604_GeelongAdvertiser_SwipeBeatsPainfulTest

 

The advantages for me were the incredibly easy insertion and start up procedure, and the discretion.  Scanning my arm with a smart-phone like device is so much easier to get away with in public than performing a finger prick to check my glucose levels!  In the absence of any other monitoring tools, using the FreeStyle Libre meant that I didn’t have to perform between 10 and 12 blood glucose checks per day to achieve the diabetes management goals I had set for myself.  The system was accurate after the first 24 hours post-insertion and I grew to rely on the readings in the same way I previously relied on blood glucose results.  I have very few glycemic excursions in my average day and I believe this helps to achieve such great accuracy.  The added benefit was the graph on the screen depicting what was happening between scans.  Having the graphs and trend arrows helped me to make better diabetes management decisions.  The sensor that was inserted in the underside of my arm was very comfortable to wear, and in fact I was unaware of it most of the time.

I have decided not to continue using the FreeStyle Libre system because of my individual needs.

I have impaired hypo awareness; almost 100% of the time overnight and between 75% and 80% of the time during the day.  I am not afraid I am going to die of hypoglycemia.  What I am afraid of is endangering myself and others when I may not be aware of how incoherent and unable to function I am due to low blood glucose levels.  Driving is one example.  Looking after my children is another.  I shudder to think about it too much.  So I need a system that will help me to identify the times when I need to prevent or treat hypoglycemia.  Using Continuous Glucose Monitoring System, (CGMS) does this and I have come to rely on it.  Having that data and alerts with me all the time, (integrated with the insulin pump) eases my worry in ways I struggle to put words to.

I also find that using an insulin pump requires a little bit of help to manage at times.  During the media launch week I had an infusion site occlusion overnight.  Instead of being alerted by alarms indicating a rapidly rising glucose level, I woke up hours later with a high blood glucose level, mild ketones and nausea.  It took me nearly six hours to get my glucose level back on track and feel better.  Again, it simply illustrated to me that the FreeStyle Libre doesn’t quite meet my needs.

This is a great tool for people who are looking for an alternative to blood glucose monitoring.  It is important to understand what your personal needs are and what the product offers.  I can’t emphasize that enough; this experience has crystallized that for me even after living with type 1 diabetes for nearly 30 years.

And the say you can’t teach an old dog new tricks; well I beg to differ!

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.

My Kids Love Mornings Like This

As a family we have a certain way of navigating through each day of the week.  Obviously there are marked differences between what we refer to as “school days” (meaning an impressive coordination of school, kinder, day care and work), and weekends or holidays.

Both kids came into the bedroom this morning to find me still in bed between 6:30am and 7am.  So they jumped in for cuddles and we had a chat about what was on the cards for the rest of the day.  I handed them the iPad and told them to relax while I have a shower and get ready for work.  We hit the kitchen for breakfast around 8am and on the way there I told them today was going to be lovely so find something fun and summery to wear.  They both emerged from their bedrooms in attire that would get them through the day and meandered their way through breakfast while I brewed a pot of coffee.  Much to their delight, lunch boxes were simplified and canteen orders were written.  It was one of the menu days they love but don’t usually get to have because I prefer to prepare their food.  One of them looked at the clock and realised it was almost time to leave the house so they both quickened their pace, finished getting themselves ready and their bags packed.  Somewhere in between that moment and arriving at work the necessary tasks were completed. I managed to find a pair of sneakers that had been missing since last night.  The cat was set up with food and water for a warm day outside.  I packed a bag so I could go straight to a boxing class from work.  The day care drop off was seamless albeit late and I arrived at work in good time.

Normally I would have gotten myself ready for work, made breakfasts and lunches, and packed bags before the kids rolled out of their delightful slumbers.  There are things I like to get done in the morning so when we get home at the end of the day the ‘dinner – bath – homework – bed’ routine runs smoothly for the kids.  There is often a bit of chasing, random hugs, chaos, last minute requests, giggles, reminding, reminding, reminding… and all executed at an effective pace.

But not today.  And here’s why.

I found myself in my pyjamas at the kitchen table with the curtains closed, a light on and silence all around me.  There was a mug, a bottle of milk, a box of dried biscuits, a tub of butter, an empty zip lock sandwich bag and me.  I started making assumptions about how I got there.  Notions of sleep walking came and went but didn’t stick.  I had disjointed recollections of being pinned to the deck of an old wooden pirate ship and being drenched by waves rolling over me in a torrential storm.  I even toyed with the idea that I might be the butt of someone’s joke and I would find myself on YouTube!  But there was a distinct taste in my mouth that raised red flag number one.  I lent back in the chair and felt the back of my shirt was wet which raised red flag number two.  Red flag number three flew up when I looked over to the display on the microwave and it read 1:56am.

Suddenly I felt it was too much to process.  I quickly packed up the mess on the kitchen table, checked on the kids, switched the light off and headed for the bedroom.  I sat on the edge of the bed and scrolled through the history on my blood glucose metre to find this…

BGMeter14Oct15The screen illuminated the bed which appeared to be drenched in sweat.

I put the meter away and lied down; cold skin and a fuzzy head.

Overwhelming thoughts and feelings washed over me.  It was amazing that sometimes I have an autopilot mechanism which activates to treat a hypo in the middle of the night.

Next thing I knew the kids jumped on me for a cuddle and we started our day.

But simple, no frills and in survival mode.

And nothing that couldn’t be helped along by a hot shower, two codeine, a strong coffee and skipping breakfast.

My kids love mornings like this; out of routine, a bit special and relaxed.

And I have decided to keep it that way.