The Type 1 Traveller: Learnings

In Matt's Musings, Travelling with Type 1 diabetes
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So it all ends soon. Mel has described it best so the whole end of journey needs no more words. But it has obviously caused me to reflect on the diabetic aspect of the trip.

I started thinking more about it as we began the downsize and consolidate stage of the trip. The weather got colder, Venice brought the first frosts, we pulled out the puffy jackets, beanies, gloves, scarves – and for me this meant a welcome reprieve from the constant task of keeping my insulin stored in a cool place (the ever present battle).

Suddenly it seemed I didn’t really need ice, I could forget about the (ever decreasing) pile of insulin for a few days and no harm done. Then a few days later I starred just throwing it into an empty esky without ice. A few days after that I amalgamated it all into the two Frio cool packs and then I had to start thinking about how to STOP it from freezing outside over night. A much easier task than keeping it cool in the deserts of Morocco though. Give me the cold any day.

Now we are in the serious shakedown phase. No more nights camping, a roof over our heads right up until we fly home, a fridge – and the task of getting rid of EVERYTHING we don’t need before we set off for home.

I started pulling out all my little diabetic stockpiles from the van and my bags. All the bags of needles (over estimated on that one…), my precious testing strips (overestimated….), my third world disaster “survival kit” (unnecessary now….), my forgotten stashes of jelly babies (I will really miss the UK ones they are GOOD) and of course the insulin. Pretty good on the Rapide, way too much Lantus  – but any less and I would have been nervous (especially based on how much Lantus has gone bad and been thrown out). Every now and again Mel will hand me a battered, almost unrecognisable Mars bar (an emergency hypo placement) pulled from the glove box or a seldom used backpack.

The diabetic travel routines and systems have all become so normal and no different from home. So as I pack away the last, battered, torn open, unused vials of insulin it makes me think of what it felt like to leave Australia. All the precious back up and safety systems. All the stress of planning, worrying, thinking, guessing. All the questions about the availability of medical supplies, food, support. They all seem so insignificant. But I realise logically that I have made it through because of planning and preparation – but the scale of worry seems, now anyway, to have been excessive.

I suppose that also is logical. How do you plan for something you have no idea about. It is like saying to a child “Get ready for the monster that is about to come through that door…!”

Their response would be: “Well…what is it?”

If my response is “I don’t know” – then how could they feel safe or secure or even PLAN for it.

I had no idea about the food, the medical supplies, the availability of ice, refrigeration or medical help in other countries so of course I was afraid and nervous.

But despite that logical knowledge  – I sit here now and wonder why I was SO nervous. Because if you think about it – there is always food, always medical help and always insulin across the world. And more so – what is the worst that could happen? Diabetes presents no short term acute health or safety threat as long as you can eat food. And thats not hard to find across the world. Even if ALL my insulin was lost – it would only be a matter of a day or so before I got more. Again – not an acute problem. And if the food was not diabetic friendly – nothing bad happens, it just requires more vigilance.

So as I sit in the lovely warmth of my cousins London home, waiting for someone to come and (hopefully!!!!) buy our trusty van, thinking about the whole 18 months as a diabetic – a few recurring themes come to mind.

First – for what ever reason (I don’t actually know) you get sent a lot of fear laden messages when you are diagnosed with diabetes. The overwhelming messages I received even from well meaning medical support personnel was “Be careful”. This of course is compounded by the societal messages you receive subtly that you are “special” because of the condition. I sometimes feel I get lumped into the societal group along with suffers of other serious diseases like Parkinsons or cancer. At the world diabetes conference there were diabetic keynote speakers who were being celebrated because they were diabetics and had completed arduous or challenging tasks – sailing around the world, hiking Kokoda, scaling some mountains. All great feats – but nothing really beyond the realm of focused, determined people. Nothing to be put on a podium about – but as they were diabetic it suddenly was. This somehow sends a message of “Diabetics don’t do this stuff – these people did – so they are amazing”.

I understand WHY it is done – as sometimes you get trapped in the mindset that you are special, fragile, delicate and limited. These people had said “stuff that idea” and just gone on living as they want to. So it was inspiring for me at the time as that was what I needed – that jolt and reminder that I am NOT special and that I should just go on living.

But again – the subtle societal message is given that diabetics are special.

(This seemed to have dawned on the speaker who was a round the world sailor who got up to speak and said humbly “I am not really sure  why I am up here as I haven’t done anything really special”. He was standing next to an astronaut though. Now THAT was interesting as the sheer mechanics of testing and injecting in space seem pretty daunting. What these speakers DID do was help me get through the first dark phase which I was then in. I was in the “I will never do X, Y or Z again” phase – which they jolted me out of. But sitting here now I realise that it is all planning and systems.)

But the truth is – we are not special. There is an incredible learning curve with diabetes. The first few months are a living hell of doubt, confusion, uncertainty, fear and deep rooted shock. It is a nightmare of learning, systems, checks, mistakes, anger, frustration, dependence, depression and – most profoundly – the realisation of your own mortality. The daily dependence on a drug regime that literally keeps you alive.

But after the initial phase everything becomes normal. It is nothing but systems, planning and thinking two steps ahead. Yes it makes my brain hurt sometimes. Yes, I get a BSL of 16.2 at 10pm at night and I swear and kick a chair. But then two days later I almost forget I have the disease because it all works again.

So my realisation is that the fear messages are unwarranted. That I need to take the long term effects of diabetes very, very seriously but the message to be cautious, careful and limited are completely over blown.

Second (that was a long point number 1…) is that there is a narrowness to the messages I received about managing blood sugar levels through diet. Everything I was told was “eating carbohydrate is your life now.” No one even mentioned the option of “don’t eat carbohydrate”. Instead the message is: take insulin to cover the carbohydrate you eat.

One medical response I got to this question was “most people can’t sustain a low / no carb diet”. Yes dramatically changing your diet is hard – a fact some of the immoral charletans of the weight loss industry feed off. But reducing food intake is hard. Changing foods is not that hard – especially when you realise most of the juicy, tasty foods you like are low carb anyway. So as I crossed the world searching for the “right” food I have realised that my BSL is profoundly more stable when I lower my carbs as far as I can and lower my insulin intake. Without the control over what food is available (as we pass through exotic countries) it has been difficult to sustain the low carb intake. But it has become a strange little routine of ours. I eat a carb free dinner, check my sugars before bed and they are 4.5. I wake up at 4.2 and turn to Mel and say “It’s the future….it’s the future…..!”

Thirdly I now see it’s all just planning and systems and that after an initial adjustment phase travelling overseas is no different what so ever from living at home.

And that is that.

One of our daughter’s favourite children’s books was this delightful 1970’s number called “I’m coming to get you!!!”. Great rough drawn images, slightly surrealist and nice and short (other parents will understand that). It is about a monster who travels across space eating planets like apples, drinking oceans dry and generally devouring everything in its path. It spies earth and heads for it constantly reminding earthlings that “I’m coming to get you!!!”

The tension mounts as he flies closer to earth and the parallel story of a monster-fearing child begins. He is going to bed checking under it, opening cupboards, checking toilets. The fear and tension mounts as the monster waits outside the child’s home for morning – when it plans to spring out and eat the child. Dawn breaks, the child steps outside and the monster bursts forth from the bushes shrieking “I’m coming to get you!!!!!!”

And the child doesn’t see it because the monster is 3cm tall.

A beautiful, simple, funny and profound message about the power and irrationality of our fears.

That’s all I can think about now as I sign off the diabetic aspect of our Two Roads blog. There is no monster in the cupboard – and if there is you can just step over it and continue walking.

Bring on the  prescription of shiny new fresh insulin…….

 

 

7 Comments

  1. Amazing conclusion Matt. Thank you for confronting fears, debunking myths and celebrating the power of humanity

  2. Cannot agree more with Lisa. You have crafted a handle on your fears, which are all understandable, given societal valency. Maybe there is an adult story, which you can also share with all those children who are affected by their label…
    Hugs to all. Auntie Kath

  3. Thank you Matt for this last insight to the highs and lows of diabetes, so much to ponder. Again thank you and Mel for your thoughts and wonderful words along your journey, a journey that has inspired me. Enjoy the Christmas season and have a safe journey home. Peace, joy and love to you all.
    Tricia Ferguson

  4. Thank you for this post. We’ve just got back from a fantastic month in India with our kids and my BSLs were pretty dire most of the time. We had such a good time we want to go back but as usual my thoughts quickly turned to diabetes. Your post has reminded me to stop being scared and a dick. Learn from the last month and just do things differently. Just get on with it. So thank you. Cathy

    • Hi Cathy
      Glad to hear about the trip and glad it has put a fire in the belly not made you more concerned! Its not an easy game at all. Well done and good luck with the next chapter.
      Matt

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