it’s been a while

It’s been a while since i’ve found myself wanting to write something on this blog but today as it I drove home in the rain, listening to Bruce Springsteen I remembered the joys I have sharing my stories with the world.

It’s been a while since i’ve felt the need to write something here – ships have sailed and storms have hit and I’ve spent my time stitching that safety net that started this whole journey for me.

It’s been a while since I came back from my time in Japan and parts of me long for the ease of the shoebox room I lived in for six months. The opportunities that shoebox room gave me is something that at the time I did not realise was happening but now I am forever grateful for. I proved to myself that I can be independent, I can take risks and I can be who I was before I tried to be someone else.

To be honest,

It’s been a while since I’ve been me. I had forgotten who ‘me’ is. Me, myself, I someone/something had been caged by someone who took me for granted and the greatest gift they ever gave me was the opportunity to be ‘me’.

It’s been a while since I’ve taken a step back and looked at myself as an adult. 93 years ago, prior to the invention of synthetic insulin I wouldn’t be here. To look at myself experiencing things that parents lying next to their comatose children 93 years ago could only dream of is a nothing short of a miracle. I owe my life to modern medicine, I rely on it every single day and to spend my days not being me…well that’s a waste of the hours strangers have put into improving my quality of life.

It’s been a while since I’ve said what I think. I am proud of myself as a person, I am proud of myself as a sister, I am proud of myself as a daughter, I am proud of myself as a friend and I am proud of myself as a stranger. I am proud to hold my head up when the world is crumbling around me because I am not wasting this life people spent hours making sure I had.

It’s been a while since I’ve said this but I am grateful I am who I am and I am grateful that ‘me’ is free.

Start living 🙂

Happy Pumping xx

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The curse of the ‘Yakkan Shoumei’ (薬監証明)

I am not going to apologise for not writing recently because to be honest I have been so run down and busy to even think about writing.However, like most university students, when the opportunity to procrastinate is placed in my lap, I snatch it up as if it were the golden snitch. So here I am, procrasti-writing something that I have procrastinated for far to long.

Anyway, towards the end of last year I learnt a very good lesson. The fear which boils inside the bodies of all pump users, erupted all over me. Yes, you may have guessed it my insulin pump died. Little did I know, a small crack had formed in the battery ‘spot’ and had in turn, caused my battery to no longer have the ability to run my little external life. The feeling of fear left me as fast as it came over me although then returned when I remembered I was living in Japan where the T1D prevalence is one of the lowest in the world.  Like all good pump users, the words of my diabetes educator replayed in my mind. “call the number on the back of your pump if anything happens” – so thats what I did.

However, the next mountain to climb was overcoming the issues of my pump maker not shipping a replacement pump to Japan or out of Australia at all. You would think a company that makes essential life devices would ship a new pump to you where ever you were in the world, but no, why would you do that. And yes this was the same company I contacted prior to my departure to ask if I could have a spare pump to take with me to Japan in case this exact situation happen and they rejected my request.

So there I was, alone in my tiny dormitory looking my insulin pens up and down and mentally screaming “FUCK YOU” to everything diabetes related.

However from every negative a positive is born and my lack of pump allowed many positive things to occur.

Number 1: I relearnt how to count my carbs and re memorised my I:C ratios again which was something that I really should have done a while ago but I procrastinated that too.

Number 2: I learnt that the world (especially the T1D community) needs to be aware of the complications faced getting an insulin pump (or any medical device/prescription medicine  into Japan).

To get medical items (more than a months supply) into Japan one must submit a ‘Yakkan Shoumei’ to the Japanese government prior to your (or the devices arrival). 

The link to this form is: http://www.mhlw.go.jp/english/policy/health-medical/pharmaceuticals/dl/qa1.pdf

I had previously spent four hours filling out this form with my mum prior to me leaving Australia. 

Number 3: I learnt the importance and love I have for my tiger print insulin pen that I once hated.

With the help of my lovely mum, I was able to finally get my new pump mailed to in time to eat bulk christmas foods (pancakes and udon because Japan doesn’t really do Christmas).

Anyway, another mountain climbed, another lesson learnt. Thats what life is all about isn’t it?

I hope people wanting to travel to Japan find this information helpful (seriously read that form).

Happy Pumping! (so happy to be back with my pump)

xxxx

Enjoy this photo illustrating my fear of using my pens again!

First long acting injection in 2 years              New pump finally arrived!

July 2000

 

 

I am not a parent but I have a an unconditional love for my very loving family, two little dogs and one extremely tolerant and supportive boy. I know that you shouldn’t compare the love you share for your dogs to the love parents feel for children but I feel as if its a taste of the unconditional love I hear so much about. Like all love, the thought of anything happening to those who fall in that category is terrifying. In saying this so many of us deal with these nightmares in our lives and we are often still standing after the wave has broken.

Analogies such as these have made me interested in waves of life that my family and I have faced. This November is the first time my parents have been alone in their house since my older sister was born 24 years ago. For my parents this is one of the biggest changes they have faced since I was diagnosed with T1D 15 years ago. As you may have noticed I have had a lot of time to think recently. Living in a room the size of the average Australian jail cell has given me inspiration to ask questions.

So today I share with you the answer to one of my questions thought up as I sat against the walls of my jail cell sized Japanese dormitory.  Today I share with you something I find really hard to hear face-to-face. When I talk with my parents about my diagnosis story I find it extremely difficult to battle the guilt that I personally carry with this story. Like every child who has put their parents through some sort of stress in their lives guilt is a common emotion. However my lovely mum agreed to tell her and my dads story about how they coped with this huge life change via every young persons greatest confrontation tool, the internet.

So here it is: my parents story on how they learnt to keep their heads above the waves that broke so heavily on their pristine shore one winter morning in 2000.

 

Never underestimate the power of Denial 

 Finally we had an answer – there was a reason why our six year old daughter had started to display all sorts of challenging behaviours. 

My husband and I (both health professionals) were scratching our heads trying to work out what was happening. Were there problems at school? Was she finding school work too hard? Was she just being naughty? 

 The marked weight loss and extreme lethargy should have been indicators yet we were still blissfully unaware. 

 It was the seemingly unquenchable thirst that made us sit up and take notice. I cant remember if I consulted Dr Google or Harrison’s text book of Medicine but all the signs seemed to be pointing towards Diabetes. I needed to rule it out so found some old Glucostix (expired of course) but worth a try.  +++++ for Glucose in the urine. My immediate thought was that the sticks were in some way faulty because of their advanced age. 

 In an effort to further discount Diabetes my husband suggested that perhaps I might buy a new box. Well it was worth a try. Again I sneakily tested the urine. There was no denying it this time. The test strip rapidly changed colour. 

 After a very sleepless night my husband rang a contact at the Children’s hospital.  

We were still trying to rule out any other condition which may present with glycosuria but of course it was T1D or Juvenile Diabetes as it was called then. 

Our sweet, beautiful, quirky, blond haired, blue eyed girl had developed Diabetes and her life as she knew it would never be the same. 

 She was admitted to hospital early on Saturday July 8th 2000 weighing 17 kgs and having a BGL of 28. As she lay in the Emergency room having all sorts of needles stuck into her she looked up at me and said, “I told you I didn’t want to come. I told you they would hurt me”. 

 What can a parent do but offer all the love and support that can be mustered despite feeling totally numb inside. I can still picture that tiny little girl with her blonde straw like (malnourished) hair in a bright yellow track suit being a very brave six year old. 

 She stayed in hospital for 2 days and was then able to attend as an outpatient for a few more.  Then we were on our own. Being a nurse the care of the child with diabetes wasn’t difficult but being the parent of a child with diabetes was. There were ups and downs but to Miranda’s credit she made sure that she didn’t miss out on anything and we were right behind her. 

 She was injecting her own Insulin and testing her own BGL within months of diagnosis. With the help of some very supportive parents she attended sleepovers  and went on her first school camp in Year 3 aged 8. There was no way in the world that she was going to let me come!!! 

 We have come a long way since that cold mid winter day in 2000. For many years I would wake up in the middle of the night and not be able to go back to sleep until I had checked on Miranda and checked her BGL by torchlight. Even now I sometimes wake up with a start. The only problem is that she is in Japan now . 

Miranda does like to remind me that in the confined space of a Japanese dorm room she now sleeps in her kitchen and the fridge is only an arms length away 

That’s supposed to make me feel better! 

 Despite spending what seems like forever attempting to control my children’s social media time I am now constantly reassured by their constant use of it. A quick glance at Facebook messenger shows me that she is online and “active”. It really is like being there and certainly beats getting out of bed with the torch in the middle of the night.  

Words by Mary Hewett

xxx M

Stitching a new safety net

Waking up in your own room and in your own bed is something I really took for granted. Since moving to Japan I have been living in my tiny little bedroom surrounded by mountains of my belongings but as of today I have officially unpacked. Never has this foreign place I threw myself into nearly a month ago felt like home until I finally unpacked all my pump supplies. Yes unpacking my pump supplies and lining them up neatly in their lines made me transition from being away from home to being at home. Unfortunately a comfort of home for me is a fresh batch of well organised pump supplies.

Like most people moving to a completely different lifestyle I have had to start to learn a new language, learn how to adapt to people and customs associated with Japan and learn how to adapt to living alone for the first time but unlike anyone else living in my corridor I have had to adapt and teach my body my new pump basal rates. Whilst I’m sure everyone else is sitting in their room thinking about what classes to take or whatever, I sit in my room and calculate precise basal rates which will match my new daily activities (riding my bike, walking more) and my new diet (a lack of carbs compared to Australia). I am in turn sitting in my room stitching my new safety net. The moment I stepped onto that plane I pierced a big hole in my previous one that has caught me so many times. Leaving the people who know how to inject my glucagon, drop me in a spare pump supply if I forget it and know exactly what I need when my blood sugar is low is something I really took for granted. Just like every good superhero a T1D needs a sidekick to catch them when they fall. Here there is none of that. I think that is why I sat in my tiny Okayama Hotel room with my box of pump supplies and cooler bag of insulin and cried. This change that I was so ready for had shocked me, I was alone with a big hole in my safety net and that frightened me.

Now four weeks on I could not be happier that I made this choice. Since I was a teenager I have always been very open about my T1D, unclipping my insulin pump from my bra in the middle of dinner on my first night in Okayama got the attention of everyone, thus allowing me to introduce my T1D to my fellow students.

I had a medical check (like all new students had too) and the lovely doctor asked me about my T1D. I explained to her I have had it for 15 years and she and her fellow medical staff bowed and clapped for me to acknowledge and congratulate me on my life with T1D. I am extremely proud of what I have done with my life. Taking this huge step to move to Japan for my studies has made me realise that whatever you do, taking big leaps as a T1D is easy as long as you bring along the extra thread to stitch a new safety net. Everything will be ok and you too will be show the world how impressive your life is living as a T1D.

Happy Pumping,

xxx

P.S. A bit of T1D inspo for you all

Krystal Boyea – I chose to live

Organisation = Stress

Never thought I would write that phrase but yes I am finding my attempts to organise my life/travel plans are causing me a lot of stress.

In my opinion one of the best things to do as a type one diabetic is to identify the outside factors that may be causing your blood sugar to rise. For me this factor is stress. May it be the nerves I feel when I am heading into the endocrinologists office, the stress of exams and assignments or even emotional or psychical stress EVERY stressful event sends my blood sugar flying. So what can I do to fix this..? Exactly eliminate stressors in my life. Ive found that it is easier said than done.

As I am planning my future oversea endeavours I have come to a bit of a brick wall. My organisational attempts are causing me to stress the **** out.  One of the reason for this is that being a T1D you are encouraged to be extremely independent which is great…until you have to organise and complete forms regarding your health, your condition, your medical history and even count the exact amount of insulin you will need for five months whilst overseas. This is when a type one diabetic needs some help. Having someone who knows about your current condition is really important even if all they know is the basal rates of your insulin pump from the piece of paper you gave them to look after, at least they know and can attempt to help.

I started this process very much so alone. I have always been very independent handling my injections all by myself from age 7 but it wasn’t until now I realised how important it is to let other people into your type one diabetic bubble. May it be your parents/boyfriend/girlfriend/sibling/friend really anyone because T1D is like running in a relay – you need a team to carry you through to get the gold.

Happy Pumping

xxxxx M

what is this/who am I?

So…I guess you could call me a blogger now.

I also guess i’d better introduce myself. My name is Miranda and I am a type one diabetic of 15 years currently using the Animas Vibe Pump (thus why I have named the blog 200 units).

My Animas Pump

I am wanting to share with people my experiences of travelling/living all around the world with type one diabetes. Hopefully I help other type one diabetics break out of their comfort zone and realise that type one diabetes can not hold you back from doing what you want!

In the coming months I am going to be travelling to the UK for the month to see some family and travel with a friend and then in October I am going to live in Japan for six months to study at Okayama University as a part of my tourism and event management degree.

Anyway, I am only new at this so sorry if this is a really boring start!

Looking forward to sharing my stories with you all!

Happy pumping,

From Miranda