Why some people don’t want your mental or physical health to get better..

When I was at the World Diabetes Congress in Melbourne last year, I was overwhelmed by the many different agendas being presented by the hundreds of groups represented at the conference. As a representative of Diabetes Australia, I had no agenda except to learn and offer up my own experience to all these ‘experts’. We were told that there was a unified agenda- to get proper treatment to all who need it, and to ultimately cure diabetes. But it was clear that the scary people in white coats showing me the newest medication that I ‘needed’, would be very upset if such a cure was discovered. Billions of dollars were being made by these pharmaceuticals and it was an odd experience- being a young type 1 diabetic and realising that a lot of people benefit financially from my broken pancreas.

One guy, Charles Mattocks, a celebrity chef in the US, came with a different agenda. He gave a seminar on the power of organic food, and it didn’t go unmentioned that he was given one of the smallest rooms to speak in, though people were spilling out and filling up overflow. He said himself that he wasn’t very popular at this conference, and that his ideas were scoffed at. But I was inspired by him and the people that got up and gave testimonies of the power of organic eating in improving both type 1 and type 2 diabetes. (I was also completely star struck when I took a photo with him and he asked me to go for a drink that evening…).

As a type 1 diabetic, and as someone who has suffered mental illness, I know better than anyone the importance of medication. Indeed there is no substitute for the artificial insulin I rely on minute by minute to stay alive.
But is there something I can do to improve my bodies response to that insulin? To avoid nauesating drugs that I’ve been prescribed liked diabex? I have found much more healing in taking apple cider vinegar, cinnamon, fish oil etc, than I ever did in diabex. Likewise, going off dairy products gave me more benefits than I predicted – better response to insulin and thus lower sugar levels, more energy, clearer skin, weight loss, improved mental health. There is so much healing to be found in food.

Mental health is a hot topic, and a buzz word popping up all over blogs , the news, and conversations. It’s a word our parents didn’t grow up using.  It’s health of the MIND. Everyone has mental health and everyone needs to look after it. In the same way everyone has a degree of physical health to look after, improve and protect. Staying mentally healthy should be on the radar as much as staying physically healthy… for most people, both types of health need more attention.

But, lets not also forget that the mind is part of the body. It’s an organ, and the most complicated and important of them all. When the brain is suffering, the entire body suffers. Likewise when the body suffers, the brain can also suffer.

The interconnectedness is so important to understand. Staying mentally healthy can improve your quality and duration of life.
People with mental illness on average, die 25 years younger than people without mental illness, because of physical health problems. For example, someone with schitzophrenia is 4 times more likely to have diabetes , 5-7 times more likely to have colonary problems.. and vice versa, a person with type 1 diabetes, is 2 or even 3 times (according to some studies) more likely to development depression.  So we can’t treat mental health separate to physical health. They are inherently linked.

To look after your mental health takes work. I often look back on my own mental health journey, and think of the pills I have been prescribed and the professional help I have received, and realise the lack of preventative measures that I had in my life to avoid the ‘episodes’ that I have suffered. While I see the value in medication for many people that I know, I am also wary of the over-prescribing of these meds as a first response rather than a last resort..(did you know that some dogs and cats are now on anti-depressants???).

Bottom line – like most bad things in the world, someone is making a shit load of money out of our unhappiness. Pharmaceuticals are dependant on you being anxious and unhappy, so don’t look to them for advice. This is also true of physical health.. there is so much healing to be found in food, exercise and habits, and yet, people pop pill after pill with side effect after side effect in pursuit of health.

As mental health problems are on the rise, we must see the link between the increase of depression and anxiety, and the lifestyle promoted by modern society.

A sustainable approach to physical and mental health must include all the goodness of veggies, fruit and organic foods that don’t pollute your body and mind with preservatives, additives, pesticides and all sorts of shit.

Be creative and be mindful of your health!

100 days of being a travelling diabetic

I’ve been debating with myself whether I should write this piece or not… I don’t want my travelling experience to be defined or remembered by my diabetes… but I can’t ignore the huge portion of my brain that is consumed by questions of insulin,  sugar levels and calculations between the two while I’m on the move.

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Travelling has been inspiring, challenging, exciting, scarey, amazing,  exhausting…and completely worth all the extra effort it takes for a diabetic to live the spontaneous and unpredictable life of a traveller. Be

fore I set off on my travels, I had a little look for articles or blog posts from fellow type 1s who have backpacked, and didn’t find much. My diabetes has been extremely difficult to control and my hba1c very high since I diagnosed over 14 years ago. So, as someone whose diabetes has played a huge part of my life, I’m going to share some of my travelling experience.

It’s been 100 days since I left home, the last 79 of which I have been backpacking my way around Europe… with a few more to go. We didn’t do the whole book in advance kind of trip.. we are going one day at a time, seizing opportunities, risking homelessness, and embracing the unknown… It’s the best and the scariest way to travel. 100 days is a lo

ng time to be away from my pharmacy, among other things. Which brings me to the first pressing question of a travelling diabetic..

How do I do the whole insulin thing? Pump vs pens

I was on the insulin pump back in Sydney, and liked being on it (as much as you can like being attached to a machine 24/7). But I looked at the consumables (sets and lines) that I’d have to carry for the 3 to 4 months I planned to backpack, as well as the insulin, and realised it wouldn’t physically be possible without bringing along a suitcase in addition to my pack.. which kinda ruins the whole backpacking thing. So I switched back to pens and stocked up on 6 months worth.

The best thing, I was told,  for travelling with insulin is Frio Bags.. little insulating bags that are activated by water and supposed to keep insulin cooled for 48 hrs… I haven’t found them to be that effective.  They are heavy in my pack, and the insulin always comes out a bit warm.. but they’ve been better than nothing. So on planes,  trains, cars, buses.. the insulin is in these packs. As soon as I get somewhere I find a fridge and put it in. It’s been a bit stressful at times because if my insulin isn’t cool it stops working properly… and if it’s damaged, stolen from a hostel fridge, or lost that’s my life line gone. We have been mostly couchsurfing and staying with friends, so that’s been easy, and every hostel has had a fridge and I’ve never had any stolen.

So storing and transporting insulin has been annoying but ok. A few weeks ago I had a very bad patch of high sugars and suspected my insulin was damaged.. it is possible to buy insulin over the counter in most countires in Europe. Novo rapid for example was about €55 in italy, €45 in france and CHF 75 in switzerland. Levimir is more expensive by about €20 per box.. but when it comes to living or dying, that’s not a lot of money to pay. In every country that iI’ve asked, you can walk into a pharmacy and show your current insulin, and they’ll give you new insulin without a script.

The second question of a travelling diabetic…

What to do for hypo food?

I dont hypo very much,  but I usually have fruit or some kind of snack on me, and for the immediate emergency,  I carry little cafe sachets of sugar in my diabetes kit.. I take them from cafes when i get a coffee and keep a supply on me at all times! When visiting museums and galleries, you’re often not allowed a big bag, so my small diabetes purse with sachets is fine.. I add them to water or just have them straight in an emergency. Explaining to security during a hypo why you’re breaking the no eating policy can be very stressful.

Carb counting

Counting carbs on wine tours, pub crawls, pizza and gelato eating frenzies in Italy and other crazy food indulges you don’t want to miss out on while travelling, is nearly impossible.  I have all but given up. I found upping my background insulin,  especially on days when I’m stuck on a bus or train for most of it, is helpful.  Some days I will do a lot of walking, swimming and bike riding, which usually means it will be a better sugar day. But I have been very high for a lot of my trip.. bringing me to…

Diabetic exhaustion

This has by far been the toughest thing. Running on high sugars for days at a time, while trying to make the most of my short time in a new city is very challenging.  I don’t want to miss out, but I also have to look after myself and listen to my  body. Sometimes it means an early night. Sometimes it means a day of reading in a park. For travelling diabetics, sleepness nights of high sugars, plus the overwhelming high induced exhaustion only diabetics can relate to, lack of routine,  new foods, more alcohol than usual ,injecting up to 9 times a day, and the endless drone of checking sugars levels 10+ times a day and getting frustrated at the wild numbers, only intensifies the travelling experience of being generally rundown. Getting reading after reading in the 20s, only to plummet overnight and scramble around in the dark for food, gets old very quickly. I’m going to be honest and say.. I’ve struggled,  emotionally and physically.  There’s no point saying “You can do whatever you put your mind to!”, when your body can’t keep up- know your limits.

Being down about my diabeties is the loneliest and lowest experience, especialy when I’m away from my family and support network. I’ve had less down days than I thought I would, but I think its important for me to have them.  Some days I need to cry and be angry at my body, so that the next day I can get up and refuse to let it stop me from having the life I want.

On my down days, I worry about being a burden on those around me, and I feel totally misunderstood when my high sugars wreak havoc with my mood and energy.  But I keep thinking of all the things I want to do with my life and each of them is a reason to not let diabetes win.

Being a diabetic traveller means you have to do a bit more prep and planning,  expect that some days will be horrible,  and that sometimes you will have to take things as they come and not do absolutely everything. Being flexible and gentle with yourself is the best advice I could have recieved. Learning your own body and its needs is imporant for all travellers. As a diabetic you can definitely travel and do it for as long and as far as you can get insulin for! Fear is the biggest enemy.

An ugly word and its poem

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So apparently, according to the posts of all my diabetes groups and facebook friends who have diabetes, it’s Diabetes Blog Week.

I’ve been meaning to post another entry here for a while now, and this seems like the appropriate time to do so! One of the suggested topics on which to write (for Tuesday… but I can’t stick to deadlines) is….poetry. People are encouraged to “write a poem, rhyme, ballad, haiku or any other form of poetry about diabetes”. Seems to me a paradox… diabetes and my love of poetry, can intersect?  But below is my first attempt at a poem about Diabetes.  I’ve recorded it, and put the words, because this one needs to be read in the way I want it to be read. (ha) So please click below to hear it 🙂 

http://vocaroo.com/i/s1eVsIaYAXUi

Diabetes – so medical, so ugly and mechanic is this word
It doesn’t inspire in me poetry, and that it could seems absurd
l mean… what would rhyme with Diabetes?
I could talk about unrelated treaties,
or make a vague reference to John Cassavetes…
was I diagnosed in Tahiti? Or perhaps make a plea for a pizza from Criniti’s.
Diabetes.

No, it seems uninterested, this word, in making itself pretty,
In dressing up in nice sentences and disguising as witty
It always feels so harsh as it sits on my tongue,
And almost like poison as from my lips it is flung,
So awkward does it fall, like a brick in conversations,
I fumble to excuse it and explain it’s connotations.
Diabetes.

But it is not just a word, not just four syllables mispronounced by some,
No, it takes up far more space,  pretends to be the thing I have become.
It is written on the extensions of my essays and RSVPs to events I’m not up to attend,
It’s my late note to work and my apology to a hurt or forgotten friend.
It compounds any stress with its constant need for attention,
It will stomp its feet if, in a day, it doesn’t get a mention.
Diabetes.

It entered my vocabulary when I was eight years old,
“Your pancreas doesn’t work. You have diabetes” I was told.
It meant nothing to me, this foreign sound, this doctors spiel,
It had something to do with blood and syringes at every meal.
It had something to with sugar and not eating it.. except when I should..?
There were lots of rules, of things I couldn’t do.. but would.
It means something different every year, always changing, rearranging
its priority and impact, getting bigger and then again smaller, exchanging
my nights out for days in bed, my excitement for the future for dread.

Diabetes.
But, and I must be reminded, it is only part of my life, and not the whole.
As it rests, always, on my mind that it all but controls
in a game of numbers, always striving, always counting,
a constant voice, whispering then shouting,
It will never be pretty or witty, or make a rhyme that isn’t shitty 
But it is written again and again, and it will repeat, 
This word so frequent in my story- with it all other words compete
But there are so many words that should be LOUDER in my story,
There are so many characters and motifs that deserve more glory.
Diabetes

It is pronounced in various ways, often as sickness or destruction,
As an awkward part of my life that requires too much instruction
But what if I said it differently, as it rears its ugly head,
what if it was something that gave me dignity when it was said…
Not excusing or minimising, or pretending it can be understood
but saying yes I have this word in my life, but in its bad maybe it can show something good?
If I spoke it as evidence of endurance, of health and of life?
And not just as a definition for my pancreas on strike.
Diabetes.

Meet the meat issues

Starting today is National Meat Free Week!

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I challenge you (well the campaign does, but I like challening people) to go a week without meat, from today for 7 days.

The campaign exists to get people thinking and talking about meat, its consumption, and its production.

About 2 years ago, I would have put my hands up in surrender and said, “I could NEVER be vegetarian. I love meat. I love burgers. I love kebabs. Animals were made to be eaten.” But then the question dawned on me… what exactly am I eating? Where does it come from? Why am I so disconnected from the things I eat, the very things that sustain my life? So I got learning.

What I learnt prompted me to respond and now I’m a vegetarian who mostly stays away from milk, cheese and eggs. Everyone responds to the things they learn in different degrees, and learning about the meat industry won’t necessarily prompt you to go vego, nor is doing so the only ethical response. But if nothing else, it’s good to be connected to and understand better, the things we put in our body .

The point of cutting out meat for a week is to show you how much meat you eat. You might not notice the change. But, if you’re an average Australian meat consumer, you will be eating very differently this week. Australians consume, on average, 123.8kg of meat a year, the third biggest consumer of meat in the world. That’s about 2.4kg a week, about 4 times the recommended amount. In 50 years meat consumption has gone up exponentially worldwide… The meat industry has changed. A lot. And for the worse.

So the extreme increase in the consumption of meat is a problem for a few reasons: (the below facts are just snippets of the issue, be sure to do your own research)

1. The impact on your health

NEW Health with Footnotes - March 2014_1

+ High consumption of red and processed meat (like bacon, ham, sausages, salami and other packaged meat such as pastrami) is associated with colon cancer3and increases the risk of type 2 diabetes.

2. The impact on the environment

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+ 90 per cent of the world’s soya and over 30 per cent of the world’s grains (including wheat and corn) are used to feed farm animals. The majority of which are intensively “factory” farmed.

+ At a time when some 800 million people suffer from malnutrition, one third of the world’s cereal harvest is fed to farm animals – enough to feed almost three billion people.

3. The impact on animals

MFW Factory Farming March 2014 with footnotes

Being meat free doesn’t just mean red meat.. it means ALL meat – including chicken, ham, fish (yes even tuna) and all sea food.

Scientists and environmentalists agree that reducing meat consumption will take pressure off the planet’s resources. Animal welfare groups globally have called for an end to intensive “factory” farming practices used to meet our consumption demands.

Going without meat for one week might get you to think about how you consume meat for all the other weeks in your year.  By just eating less meat, or having a few meat-free days a week, you can make a big difference to your health as well as help to lessen the damage on the environment. Alternatively you might decide to consider opting for meat and fish that is ethically and sustainably produced. Or you might want to go all out vego.

Skip meat for week, do some research and I’d love to hear what you decide to do! 🙂

 Images and stats taken from
https://meatfreeweek.org/  check it out for more info.

A GREAT book to read on the whole food issue, beautifully written and researched, is Eating Animals  by Jonathan Safron Foer – a great philosopher of our time!

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A good film regarding the health impact of animal food products is the doco Forks over Knives (wacth in full below):

http://www.alluc.to/documentaries/watch-forks-over-knives-2011-online/329436.html

Hijack of the day

It has come to my attention that today, and yesterday, and tomorrow, and every single day, have been been hijacked; taken over and marked with flags of ownership… though mostly for a good cause. I’m talking about all the National and International days proclaimed by organisations as Their Day.

The last year or so I have noticed it a lot more. Perhaps this is just because I am more in tune with the charity and cause frequency than I was before, or perhaps the growth in social media has given organisations more access to the general public. Or maybe, as I suspect, the ever accelerating process of globalisation and the consequent excess of information, with corporations and causes all wanting your attention, has both permitted and forced everyone to adopt an entire day, or even week, to publicise and broadcast their agenda – ‘raise awareness’.

If I sound cynical, I don’t mean to be (the tone seems to come naturally to me) –  I actually love knowing what ‘day’ it is today; whether it be International Dance Day (29th April), Red Nose Day (27th June) or my Birthday (11th December).

Days hold significance for people at all levels – individually and collectively. Western culture particularly values dates and general ‘officialness’.

As someone who is drawn to meaning, history and sentimentality (perhaps it’s just called being human), if I’m having a particularly uninspiring day, I’ll sometimes look up the date and see any causes that want my attention today, or any interesting history that has been officially scheduled into remembrance on this date. This quick investigation draws me out of the smallness of my world – one that can seem, on those days, claustrophobic, daunting or even boring. It connects me to meaning, and collective communities that are bigger than my otherwise shrinking thoughts.

For example, in the last week we have had:

  • Today (21st March) – World Down Syndrome Day

  • Thursday (20th March) – International Day of Happiness (United Nations)

  • Monday (17th March) – St Patricks Day

  • Saturday (15h March) – International Day Against Police Brutality

As well as a name, there is action to those days – people are getting together to celebrate, advocate, mourn, petition, remember.. something. It’s cool.

I might write about some of these ‘hijacked’ days and the causes responsible from time to time, on the days that they take place.

Heads up – Next week, starting on the 24th and ending on the 30th of March, is National Meat Free Week. Because I want someone else to explain, here’s an article from the Sydney Morning Herald that will tell you things:

http://www.smh.com.au/lifestyle/diet-and-fitness/eating-meat-when-less-is-better-for-you-20140315-34t7d.html

but I’ll write my own article next week. (I challenge you to read the article, and attempt a week without meat).

TODAY If you have had a mediocre Friday and need reminding that the world is diverse, vibrant, interesting and home to people with initiative and passion, here’s a list of things that are significant about today:

As already mentioned today is World Down Syndrome Day – this video made for the day is a beautiful watch: https://www.youtube.com/watch?v=Ju-q4OnBtNU

It’s also Harmony Day in Australia, a day to promote cohesion and inclusion and promote a tolerant and culturally diverse Australia – schools across the country encouraged children to wear the colour orange to show their support for the message ‘everyone belongs’.

A long time ago today, in 1617 Pocahontas died in England – incredible that her name and parts of her story, are still remembered in the 21st century.

If you’re still not feeling connected to the world, here’s a song by Baths for you to chill out to – they’re playing tonight at Oxford Art Factory, which makes today a good day for the people who are going:  https://www.youtube.com/watch?v=dHvWURUzj3Q

Me and D <3

Me and D. It’s been 14 years and there is so far nothing to suggest that we won’t be together for the rest of my life. It’s complicated, and mostly not loving – I think D might be be trying to kill me, and I generally hate D…. but for better or worse, I’m stuck with it.

My motivation for this informative rant about my diabetes is mixed. Part of me knows (or at least hopes) that people are interested and want to be informed on this illness that takes up a huge portion of my life.  And another (possibly bigger) part of me is frustrated by some of the well intended but uneducated comments and questions that I am subjected to on a regular basis.

Mostly these comments are about what I can and can’t eat, why I’m not taking better care of my body, or ways that I can supposedly cure myself or limit my need for medication.

I have received extensive education on diabetes type 1 generally, and my own body, for the last 14 years and don’t particularly want to hear about what you learnt from a movie/google/your grandparents.

I have TYPE 1 Diabetes – type 1 is about 5% of diagnosed diabetes.. the other 95% is type 2. I was diagnosed when I was 8 and I will have it for the rest of my life (probs).

What is type 1 diabetes?

It’s  an autoimmune illness. This means that my body got some kind of virus that was attacked by my immune system. Unfortunately, as it waged civil war inside my body, it killed the beta cells in my pancreas rendering them a tragic casualty. These cells produce insulin. So the pancreas was wounded significantly, and abandoned its duty in insulin production. The human body cannot function without insulin and so all type 1s are dependent on artificial insulin daily (hourly) to continue living, though everyone requires different amounts. The insulin we use is artificially made based on some kind of cloned pig insulin.. (interesting side story).

Type 1 D varies from person to person, and some people may have an easier time controlling it than others for medical reasons that may bore you… *spoiler alert* I’ve had a really difficult time controlling mine.

So I was born with a predisposition to get type 1 D, got a virus and BAM. I didn’t eat too much as a child and I was not even a little bit overweight. Symptoms of diagnosis include extreme thirst and needing to pee a lot, fatigue and rapid weight loss. So I was actually underweight when diagnosed.

What does insulin do?

It is a hormone produced by your pancreas continually. Your body is amazing – doing all this stuff without you even telling it to! The pancreas has got to be the world’s most incredible calculator – it works out, based on the amount of carbs you eat, exactly how much insulin is needed to nativage that energy around the body. The insulin acts as a key to all the cells in your body. Without insulin, the cells are locked and don’t let in the sugar, leaving it to hang out in your bloodstream and cause trouble. Thats why when I was diagnosed the sugar in my blood tested at 38  – the healthy range is between 5 and 8. This excess sugar can damage lots of parts of your body like your eyes, nerves, kidneys.. the body tries to get rid of the sugar by peeing.

If the body doesn’t get insulin for a few hours it freaks out because no insulin = no energy = body starts shutting down. It starts breaking down fat and muscle for energy  – the by product of this breakdown are a bunch of nasty things called ketones. Ketones are toxic for the body and can start building up in the blood. These are hard to get rid off and can result in death. When you start getting poisoned by these, within a few hours you go into something called Diabetic ketoacidosis  – or DKA. This requires immediate hospitalisation and is extremely unpleasant and dangerous. This has happened to me 5 or 6 times.

So I get insulin through an insulin pump. I used to be on multiple injections a day, and originally I was on good old syringes… but times have changed. The picture shows my pump on the day I got in in 2012 with the little friend it came with.. The pump delivers insulin to me 24/7 through a cannula that I change every few days when I also refill the insulin. I have to tell it what I’m eating and when so it can give me extra insulin, but there always has to be a bit going in. Looking after a pump feels like looking after a baby sometimes, needing feeding and changing, waking me up in the middle of the night….

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So now I’ve got insulin what’s the big deal?

I can get high sugar levels if I eat too much and don’t give enough insulin, or if i get stressed – this makes me very tired, thirsty and prone to mood swings and the excess sugar is very bad for my body. Give insulin (a specific amount.. I’ll work that out).

I can get low sugar levels if I give too much insulin, dont eat enough, exercise.. etc. this makes me shaky, appear drunk or confused, and teary.  So if I start being weird and dazed check my sugars, give me juice accordingly (not too much).

People get confused all the time as to when to give sugar and when to give insulin, and in an emergency, this mistake can be very dangerous.

So to avoid these situations I have to engage in a daily mathematical battle and elaborate guessing game to stay within the healthy range. This is a daily battle – taking 8+ tests a day and reading numbers that all seem to incite an emotional response (guilt, anger, dissapointment, anxiety.. ). Longer term, I must aim for the all important HBA1C  – this is a blood test I take every couple of months and measures the average amount of sugar in my blood over the past 3 months. A non diabetic will invariably sit at 6%. A person with diabetes’ aim is to get to 6.6% or as close as possible. I haven’t ever really been close. Getting close to this number reduces my risk of developing complications such as eye degeneration, nerve loss, kidney failure, infection, memory loss.. etc. Anywhere below 8% is usually relatively good for a type 1 but everyone has different goals keeping in mind knowledge of one’s own body and what’s realistic. My current goal is anything below 10%… this number often shocks doctors and new type 1s.. it’s quite high.

Everything can affect the sugar levels (not just food) including stupid things like the weather, stress and hormones.

D affects everything in my life, and everything in my life affects D- it’s tres complicated.

Other things to mention..

Mental health- Depression is 2 or 3 times more prevalent in people with type 1 than in the general population..  this can be to do with the sugar levels and the effect they have on mood and hormones etc.. plus the burden of living with a chronic illness. Anxiety is also more prevalent, doesn’t take much to work out that one. Likewise is a complicated relationship with food resulting in common eating disorders (over half of girls with diabetes have had eating disorder related behaviour).

Please don’t talk to me about your relatives that have diabetes, especially if they are dead (you’d be surprised how often this happens). It causes me significant stress when you tell me you know someone who lost a limb or their eyesight to diabetes … it also causes me stress when you tell me about someone you know with diabetes who’s currently off climbing Mt Everest and “Don’t let it hold you back!” -it does sometimes, against my will, hold me back.. so withhold your motivational speech.  I do love talking about D, and listening to other’s experiences, but it’s not a comparison. Everyone’s journey with diabetes is different and sometimes its not comforting to hear second hand about someone’s triumphs or failures.

One more thing – saying things like  ’it could be worse,’ or ‘at least you don’t have cancer’.. is not helpful! No one wants to compare suffering or illness, and doing so is belittling. I am not going to say diabetes is worse than any other struggle – but it is damn hard. It’s completely self-managed . There is no other illness that requires so much hard work and thought. Diabetes control is not prescriptive, has no one answer, doesn’t get better, doesn’t take days off (ever!), and treatment constantly needs adjusting and changing. It could be worse, I could live in a country without access to medication, but my struggle is still difficult.

I am grateful for friends that understand my experience and journey with D, and I really do appreciate questions from people who are interested… just want to spread some education 🙂

The above was mostly off the top of my head, so some of this might be off scientifically speaking.. I guess this is just my understanding of my body and some of what I’ve picked up over the years.

Bait – My Blog About Important Things

Blogging about important things… I clearly don’t really know what I want to write about; I have so/too many things on my mind. And I don’t say that to appear worldly and intelligent, but to confess my mind’s habit to wander and muse to the detriment of focused activity… but regardless, writing is something I enjoy, and important things (important by my opinion) are fun to muse on. I suspect this blog will be largely unedited.. just to warn the perfectionists among you.

So to begin, here is something I wrote when I first thought about starting a new blog a few weeks ago:

I begin this blog with the desire to write about something.
But I feel cautious. I didn’t post this first entry for 4 weeks after I wrote it.I am hesitant to assume that my thoughts are so unique and beautiful that people would actually want to read them (and yet have, ironically, declared that my blog will be about ‘important’ things…). I am aware that everyone is popping up with their own blog.. along with the graphic onslaught of information I see explode all over my facebook newsfeed everyday, I am a little troubled. Though I like to think of the blogging as an expression of healthy civil society and variety of opinion, a lot of the images and ‘updates’ I bear witness to daily don’t give me the same fuzzy feeling of democratic community.

In the words of Mr Griffith from Easy A, “I don’t know what your generation’s fascination is with documenting your every thought… but I can assure you, they’re not all diamonds.”

I have been trying to cut down my online documentation of life lately; I don’t want to document my days in a public forum, I want to live them. (Updating my very own personalised highlights reel for all my fans becomes addictive very quickly.) I sometimes get upset when people snapchat me important and beautiful moments of their life.. like their favourite song at a gig, or the moment a soufflé opens and spills chocolate, or their friend walking through the arrival gate at the airport, or a delicious looking breakfast.
It makes me sad because I think of them getting out their phone and carefully positioning it, capturing the moment through their lens and not really seeing the moment themselves. They are looking at that screen and missing what’s really happening. I’m also aware of an accomplice in the robbery of experience; me, watching.

There’s a moment in The Secret Life of Walter Mitty that comes to mind:
Sean: They call the snow leopard the ghost cat. Never lets itself be seen.
Mitty: Ghost cat.
Sean: Beautiful things don’t ask for attention.
Mitty: When are you going to take it?
Sean: Sometimes I don’t. If I like a moment, for me, personally, I don’t like to have the distraction of the camera. I just want to stay in it.
Mitty: Stay in it?
Sean: Yeah. Right there. Right here.

There is a place for photography as an art form and as a medium for sharing, absolutely. I love a good photograph; I love that sunset you watched last night, and those big smiles at that event you went to. But there is something missed when we don’t completely absorb in the wonderful moment in which we are are living without feeling the need to document and share it. Photography has lost its privacy; its subtly. People don’t store away private photo albums for close friends when they come over for tea. They share them digitally for 1000+ friends to look at, without the commentary and laughter that goes with the back story, the explanation from the photographer. The same goes for the art of writing a good status – condensing a real experience into a witty few lines, always keeping the potential likes in mind and the formula or structure needed to get as many as possible.

Not surprisingly, increasingly becoming an interesting area for research is the rise of narcissistic traits with social media. Research from California State University has shown that excessive use of social networking may well be linked to heaps of psychiatric problems, such as attention deficit hyperactivity disorder, narcissistic personality disorder, depression, voyeurism and obsessive-compulsive disorder to name a few. Those who are very active on Facebook and Twitter have been shown to often have narcissistic or insecure personalities, according to credible studies. As any person who uses social media is aware, and, as all assumptions must be, backed by research, is that those who frequently update Facebook statuses or post Tweets are doing it out of a narcissistic desire to glorify themselves. The addiction to ‘likes’ stems from that part of our brain that is pleasure seeking and goes back for more of what lit it up. The likes can become a source of security and approval; a basis for identity.

So my first blog post seems.. ironic? hypocritical?
I am sharing my private thoughts on a public online forum on how obsessed my world seems with sharing private thoughts and moments on online forums, to the detriment of both their full enjoyment of the moment, and their ongoing mental health.I was getting to another point that I’ll leave for a later blog.

But for now, I’ll just say, I have created this blog to write, hopefully about important things, and I’ll attempt to stay away from narcism where possible.