The Type 1 Traveller: Chapter 2

In Matt's Musings, Travelling with Type 1 diabetes
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This posting is about the complexities of travelling as a Type 1 diabetic. It may be interesting to non-diabetics, I am not sure – but the main idea is to share insights so other diabetics can work out their own approaches to getting out and about more confidently.

Week 2 of our across the world adventure and we had just hit Highway 1 again after an hour winding our way in from the coast near Port Stephens in NSW. We had been staying with my brother and his family for several beautiful days – frolicking cousins creating chaos throughout the house, no time pressure, a house we felt at home in. But now we were setting out again which felt good. The windows were down and the music was loud. I was slipping back into that fantastic feeling of travelling and moving – feeling the adventure through my veins – when my phone rang.

Mel answered it and it was my sister in law. Without having to hear another word from her I swore and slapped my forehead. Then my wife confirmed it.

“Do you need that big box of insulin from the fridge?”

I did a rapid assessment of options – how much insulin did I have on me? Could she post it somewhere? How much was in the box? Could I just buy more? But alas all roads led to the turn around.

Two hours later we were back on the same stretch of road. A little more subdued, less loud music and slapping of the steering wheel and a little more conscious of staying on top of things.

And so the trials and tribulations of travelling with diabetes began. We were 2 weeks into our across the world adventure but everything so far had been so easy – staying with family and friends and not moving that often. Whatever food I needed, whenever I wanted it, fridges, needles, testing strips – all on tap. My dad is a diabetic as well (and a physician which is very handy) so any time spent at my parents home is a dream. I am constantly stealing my dad’s hypo fruit juice and chocolate mint slices (any sugars remotely close to a 4 and I use it as an excuse to raid his treats….).

Things were about to change though. Ahead of us stretched 5 weeks of camping which brings a certain set of challenges with the diabetes but nothing I hadn’t done before. We have done many extended and remote camping trips since I was diagnosed 3 years ago. We have our systems:

ž  Back up insulin in the esky in a water tight container (so it doesn’t end up swimming around in foul esky juice with beer, wet cheese and lettuce leaves). Ice checked regularly.

ž  Total back up kit of Rapide, Lantus and hypo food in a clearly marked cool bag always sitting close to the back of the car

ž  And of course the main thing which is accounting for the significant impact of incidental exercise that occurs when camping. Just moving through the day – adjusting tents, getting water, cooking outside, moving around and walking to the beach seems to churn through my sugars. As a matter of routine I drop my Lantus (basal) from 14 down to 12 units and regularly skip my lunch time bolus Rapide (usually 3 units).

The more weighty challenge of East Timor and then the whole of South East Asia loomed after that. Now THAT was unfamiliar territory. Heat, different foods, irregular routines, long bus trips and either no nutritional tables on food or even if they are there I won’t be able to read them anyway. All the while attempting to travel through the tropics carrying one YEAR’S supply of insulin and Thyroxin at a nice, steady 5-10 Degrees Celsius. That’s staying in cheap losmen, hostels and backpackers where you don’t get a nice little bar fridge in your room. In some places we are going we will be are happy to get a tiled floor not dirt. Too easy.

I haven’t got there yet – so I will write more as I wade through that and hopefully shed some light on the easiest way to travel through South East Asia.

But to set the scene I might wind back a few years to the diagnosis and fill you in on the story so it all makes sense.

I have always had this niggling fear of getting diabetes. My uncle has had it since he was a teenager and back then it was less understood and everything about it seemed really hard. My parents told us of the symptoms so of course any time I was excessively thirsty or needed to go to the toilet more often than usual I had this little bolt of panic. I made it through the teenage years and thought I was home and hosed. “No one gets it after that” I thought. So I forgot about it all.

Then dad got it several years ago and it came back into my mind. Once again I thought I was safe though as Dad’s late onset diabetes is a known occurrence. Surely it won’t happen to me.

So I had the genes in me but who knows what triggers it. “They” say it may be a virus, some auto immune complication. I met one diabetic who attributed both his and his 4 year old daughters onset to cases of acute stress. Both had quite severe stress incidents and then two months later the diabetes hit. Now this is no Lancet article – but as soon as he mentioned that to me it made sense.

Two months prior to it hitting I had finally left the management consulting company I had worked at for years in order set up my own business. Now I was going to be completely self reliant to pay the mortgage and feed the kids. I was pretty confident of the clients I had so the actual working for myself was not the stressor – it was the leaving. Nights of anguish and concern. Weighty conversations with my wife about the meaning of life and work. Financial discussions, questions about the future, questions about schools and kids and where we could afford to live. On top of this the extraction from my employer was more than unpleasant. Emotional pressure to keep me, undercurrents and intonations of disloyalty and then ugly interactions about clients and commercials.

Who knows what strange and complicated mechanism was triggered. But somewhere inside me something happened, the irreversible ball started rolling and nothing was the same after that. Like many I went into denial when the symptoms struck (which is embarrassing considering my family history and medical parents). Maybe it’s normal to be this thirsty? Googling medical websites about frequency of urination and then playing little mind games: “I went about 20 minutes ago but maybe its more like 30 or 40 minutes…..”

But when I went for a surf at Bells Beach and could hardly walk up the stairs, then guzzled a litre of Gatorade and almost immediately urinated it all out I knew something was wrong. I called dad in Sydney and without hesitation he said “You need to get to a doctor now…..”

It took and hour or so to get a special, hurried appointment. It took 5 seconds for the blood glucose monitor to register my reading – and then suddenly that was that. Five minutes later I am sitting in the waiting room again with my heart in my shoes, my mind reeling and a slip of paper scheduling my appointment at the Royal Melbourne Hospital clinic the next day. Thanks for coming.

I won’t describe the emotional washing machine that I went through. All diabetics go through it – everything so confusing and scary and uncertain. The daily mental energy required just to stay alive and healthy is initially exhausting. And while there is no shortage of care on offer you are left with this niggling feeling that “no one REALLY understands what I am going through”. All the medical and support staff are incredible – but they don’t know what it’s like to live with it. Therefore they can’t guide you through the incredible array of subtle complications, implications, permutations and intricacies of a biofeedback system that is so complex we don’t REALLY understand it all.

On top of this I had an on call medical specialist who I could wake up at 2am if I really had to. Any question I had would be calmly and reassuringly explained and I would slowly learn more and more every day. God knows how people without medical friends or family get through it.

Above and beyond the just staying alive thing I was petrified about my life changing. I have surfed all my life and the ocean is one of my greatest sources of energy but what happens when you are hypo out the back of 8 foot Bells Beach and your legrope snaps? I have always mountain biked and loved hiking in remote locations but will I ever be able to head out on my own into nature again?

After the shock subsided I settled into the routines – and started noticing the patterns. Weetbix are brilliant but the Multigrain Weetbix are even better. The exercise induced hypos are easier to correct than an insulin induced ones. Distinguishing between a “good” 6.5 BSL or a “bad” 6.5 BSL (the former being from nice low GI foods and sufficient to get me through the night, the latter from a sugar hit and likely to run out before I wake up).

Mostly though I saw the whole thing as a puzzle that could be solved. The catch of this puzzle was that the rules changed all the time so just when I thought I understood the game something completely bewildering would happen. Then I would call my dad and talk him through the scenario and we would slowly work it out. The most common confusing scenarios have usually been when my insulin has gone bad and stopped working. The most bewildering has been establishing the timing of my Lantus regime. I took it all (14 units) in the morning and I would seem to “run out” by dawn so I was waking high. I would take it before bed and I was having to eat before bed just to avoid a hypo at 2am.

After much testing and playing I settled into a nice pattern of between 4 – 6 units at night and the balance of the daily amount in the morning. This way I avoid the night time hypos (VERY unpleasant) and also seem to wake up at a nice relatively low BSL.

But by far the most fascinating component has been the mental game. The battle to control your attitude and approach. The constant focus and attention to a physiological process that had simply never crossed my mind for the first 37 years of my life.

Looking back I can see distinct phases:

  • ž  The shock and fear about mistakes, losing control and being reliant on an artificial daily regime of testing and replacement of life-determining hormone
  • ž  A strange sense of mortality and finality based upon the awareness of how fragile our bodies can be and the complexity and intricacy of our physiological systems.
  • ž  A false dawn where I thought I was in control and nailing it….only to be shattered by it then spinning totally out of my control again
  • ž  A slow, creeping sense of power and control that edged back every time I resumed a sport or activity that I loved pre-diabetes. Surfing was first (and the most critical to my mental health!), then mountain biking, camping, overseas travel, then a multi-day hike and recently running.
  • ž  A new phase of control and awareness based upon a more refined observation, insight and adjustment of my diabetic routine.

Based upon all the above there is a newer phase of acceptance. Every month or so something spins out of my control again and I get frustrated with the “not knowing”. Every few months I hit that wall of sheer annoyance where I just don’t want to THINK about it anymore!!! Then I will often swear at the disease, go for a run (while swearing loudly at the disease and how much I hate it) and then I’ll slowly calm down again.

Every now and again I get these beautiful half days where I actually forget I have it. Then like some small child who believes they are a super hero and attempted to fly, I will hypo and come crashing back to reality. But that brief moment is sweet and I am sure they will come more and more.

There is one thing however that I honestly don’t understand – and it is the mindset about diabetes both within the diabetic community and outside it. Maybe it comes from being diagnosed as an adult so I can think things through more and adapt but I could never really understand this mindset that diabetics are “special”. Besides being conscious of eating right and knowing your bodies energy usage there shouldn’t really be anything a diabetic can’t do (besides maybe fly a fighter jet or attempt a desert survival activity). Instead of assuming diabetics CAN do anything there is this strange notion that when they DO do something adventurous this has to be celebrated.

Its not like we are quadriplegics who have relearned how to walk. Any activity where you can carry food and insulin (and have access to these) we should theoretically be able to undertake. This does obviously rule out some things in life. Having worked as a wilderness guide I used to pride myself on the knowledge that if you left me in the middle of nowhere with nothing but a little bit of food and water I would be able to survive for quite some time. That’s now not the case. Without a nice supply of insulin and food I’m technically dead pretty soon (though I would love to know how long I could actually go without either one and without doing myself irreparable harm). But instead of making me back away from things it makes me interested to see just how exactly I could achieve it.

I had this moment a while ago – at the end of our first post-diabetes multi day hike. We had just spent 3 days and two nights in the Victorian high country with our three (very!) young daughters and another family. The sugars had been beyond my expectations. I had looked up some blogs about diabetics who hike and got some brilliant tips:

  • ž  DON’T rely on chocolate and Gatorade – do the opposite and cut it out (except for hypos obviously and the fact that you can’t possible do a day of hiking without some chocolate at the end)
  • ž  Stick with really low GI meals and have a pocketful of great low GI snacks (vitaweats and vegemite, home baked meusli cookies, nuts) that I just graze on all day
  • ž  Dried apricots!
  • ž  Take only Lantus and don’t take any rapide at all

For three days my sugars were so good it was like I wasn’t a diabetic (except for testing 10 times a day to check in). On the last day we were descending 800m over about 12km along this ridgeline. It was this beautiful track that snaked through huge mountain ash trees. We rounded a bend and this guy was running up the other way – with no gear what so ever. Running shoes, running shorts and that was it. No food, no water, no gear. Just a casual 12km uphill run and then back down again. I looked at him and thought “First COULD my body do that and then HOW do I get my body to do that!?”

The critical question was “is it physiologically possible?” After that everything is simply logistics and sheer bloody minded determination. There is nothing special about those last two components. People do that every day on this planet.

So I asked the professor of endocrinology when I saw him and he smiled and said “I suppose there is no physiological reason why…..you would just drop your insulin to the lowest possible levels to permit that activity….”

Bingo. There you have it – it’s all a mind game.

Of course I am being flippant because it is complex and despite all the preparation something may go wrong on the day that requires adjustment so you need to be ready. But the point remains – there are not many things that are physiologically impossible for a diabetic.

The point was driven home when I attended the world diabetes conference in Melbourne just recently. It was a fantastic day out attending a medical conference with my dad and just seeing what was going on in the world of diabetes. Obviously the things I was interested in were not the medical side but the humanistic and living with diabetes elements – and I was completely blown away by the first session.

In one short conference session I heard from an astronaut, a round the world sailor, an Olympian and then this inspiring woman from Tasmania who one day decided she was sick of living in the shadow of diabetes and she stepped out into the light. The Kokoda trail (measuring her sugars 28 times a day!!!), running events, cycling in South East Asia. Everything stemming from a simple decision to get out and just DO something.

And what struck me the most was the quote from the famous Olympic rower Steve Redgrave:

“I was not going to live with diabetes….diabetes was going to live with me.”

I loved it. I got this rush of possibility and my mind was reeling with ideas about what I wanted to do. It was all just a puzzle of planning and preparation. The rest was in my head.

So I am trying to tell myself that right now. Because tomorrow we fly to Dili at 6am. I don’t know whether they sell Weet-bix there and don’t know what sort of multigrain rolls they have. To make things more edgy my sugars went completely haywire just days ago. Waking up at BSL of 10 when I am usually 6, measuring a BSL of 19 before lunch when I am usually 8 or 9. Nothing had changed, nothing was different about my day it was just one of those things. After throwing out my Lantus (it must have gone off) I seem to be under control again……but you can imagine the fear and uncertainty that lurched into my head as I pondered our departure into the unknown.

Having had the confidence knocked out of me I think I am back. Which is lucky really….because there is no turning back now.

 

8 Comments

  1. I have no doubt your honest sharing of your story will be inspiring to many – both diabetic and not. Go well with your beautiful girls Matt. x

  2. Wow, well done Matt. What every diabetic should read.

  3. Thanks for those words of encouragement. Your great grandfather, the mine manager would probably be very proud of how you are making diabetes live with you, not let it beat your wonderful passion for life. We feel so humbled by your words.

    • Thanks so much Kathy. Day two in a foreign land and the sugars haven’t been too bad at all. Funny how things often aren’t as scary when you are in them. Thanks for all the encouragement.
      Love Matt

  4. Gosh Matt I had no idea it was so complicated. Thought diabetes was one size fits all, insulin each day, fixed, thanks for enlightening me. Maybe you could name your travelling friend and hope he behaves himself. A movie “basket case” comes to mind, twin brothers, one evil one who is deformed lives in a basket, named Carl. May you and your friend, be free to live out your dreams and enjoy a beer or two (not even sure you can drink beer), rel

  5. Hey Matt,

    Interesting read on many levels…

    ‘They’ say there is no cure, however as you mentioned ‘they’ also don’t know for certain as to why it happens. Which begs the question how can ‘they’ be so certain about there being no cure when they can’t be certain as to how it starts??? There have been many cases of people curing themselves, even after 13 years of being insulin dependent…

    We once thought the earth was flat, we once thought it was impossible to run a four minute mile (scientifically proven at the time) and we once thought that brain cells couldn’t regenerate…the leading scientists of their times proven wrong on all accounts!!

    So in this instance – why not?

    When you are ready, have a look into Dr Troy Stapleton (a radiologist on the goldie) Diagnosed Type 1 as a 41 year old and competes in elite triathlons. Recommends high fat, low carb diet. Very different to what the diabetic education community says however their advice is based on the lowest common denominator – that is “it’s easier for people to inject themselves based on what food they normally eat, than dramatically changing their diet. So let’s feed the fear of death into them that if they don’t have insulin they will die” If you dig around this is basically the stance that the American Diabetic Association has admitted to taking. Dr Troy Stapleton may have even spoken at the conference you went to. He is advocating for a complete turnaround in the dietary advice being given by the diabetic community. We need some carbs for brain function, however fats is proven to be a more efficient and effective way of fueling the body. Avocados, nuts, flax seed oil, wild caught salmon. One nutritionist describes it as heating your house with coal versus wood.

    Even how you consume your meals can play a huge difference – eat your fats first and leave your carbs till the end, as this slows down the digestion of carbs into your blood stream.

    Also the chemical they use to bleach flour is the same chemical they inject into lab rats to GIVE them diabetes…mmmm interesting. So cut out all wheat and also diary.

    The cases we have read where people have cured themselves have used a 30 day raw food diet. Worth looking into.

    Great episode on quantam where they had a young elite athlete with a poor diet face off against an in-active 60 year old with a great diet. They both ate a McDonalds Meal and tested their response over a 6 hour period. Here’s the kicker… the young active guy with the poor diet needed 3 TIMES the amount of insulin to process the meal compared to the older bloke with the great diet. Research shows with the right diet you can manage with just a third of your pancreatic function.

    The other big area to look at is your gut. More and more research is showing how the gut is the foundation and driver of the immune system. We all need the right gut flora and bacteria inorder to fight off disease. Speak with people who travel extensively to countries where dodgy food is an issue and they’ll tell you they kick each trip off with a serve of the local yogurt. There is a thing called ‘leaky gut’ (you can get yours tested with a vega test) which basically means your gut is missing all the essential bacteria. It’s not absorbing any of the minerals or nutrients from your food and is basically toxic. Get that right and you are working towards re-calibrating the immune system to do the job it was orginally designed to do (as opposed to attacking your islet cells). This is so important. Just think about the messaging you would have received at diagnosis. “No cure, however you can ‘manage it’. You do this by managing your symptons” My question is “If they see it as an auto-immune issue, where the immune system starts doing the ‘wrong job’ why is there no advice on how you can re-calibrate the immune system so it starts doing the job it is supposed to be doing???” It’s a developing field however immunology is something they are having success with in curing cancer and other immune driven diseases. Getting the gut right is simply a form of immunology.

    When you get a chance start poking around. The diabetes industry is worth $245 Billion in the US alone. That is publicly listed pharmaceutical companies who need to report profit earnings to share holders….

    You would know from your consulting work, to achieve a different outcome you need a different perspective. Sometimes the best perspectives are from those situated outside of the ‘company’!

  6. Good Afternoon,

    Loved the article and very great points. I am the oldest in my family and I know for me it was never a big concern because I always stayed healthy but when my younger brother ended at the hospital from a high blood pressure and pain on his side it opened my eyes. Of course he didn’t know he had Diabetes or even know what the symptoms were but that night as he laid on bed and was told, I remember the expression he had. As the oldest in my family, I was very lucky that it some what skipped me but not totally. It’s genetic from what he was told but also was told their was no real reason why or how he even got it. I started to get tested every year since that day because it does scare me to think I can one day also get it. Loved the article and if I may with your permission would love to blog this on my company website. Thanks Again

    • Hi Denny
      Thanks for the note – and feel free to reblog away. The diagnosis phase is pretty painful emotionally. Those first three months are some sort of dark confused blur to me. Hope your brother is in control now.
      Regards
      Matt

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