A reflection and musing about travelling with type 1 diabetes.
I have mentioned my time at Outward Bound a bit previously and to be honest it is hard to get away from it because of how much it impacted me. I think it meant so much because the philosophy that drove it resonated in the first place so it was like this organisation had taken what I believed in and then amplified it in me.
The core of it was about making sure you achieved your potential – that you became everything you could be. But the history of it was a little darker and it arose from a need to strengthen the minds of young men about to head off to WW2 in Europe. The idea was that if they were shown how much they could endure and face before the war that when they DID face the unimaginable they were a little more ready and therefore a little more able to survive. Stretching you so when it does get hard later in life you can say “I’ve been here before and I can move through this again”. Sort of like an inoculation against giving in during hardship.
Nowadays it gets a cuter name – the comfort zone. It can get jazzed up and corrupted these days by the unscrupulous (e.g. Boss in large corporate: “Sorry Mr Jones but I am going to work you into the ground – to challenge you, stretch your comfort zone and make you a better employee”) but the idea is pure.
If you never take a long hard look at what you think your limits are or what scares you (and then test those ideas) – then how do you ever know? Its pure because you can’t philosophise or theorise about it. You can only test it by testing it. You have to go through something hard and painful to see the other side. You can’t just imagine it. And once you have been there then you look back at what you thought were your limits and they have changed.
I have these incredibly powerful memories of driving home as an 18 year old after having done a skydive (not one of those tandem ones but assisted free fall followed by a solo descent – which I can’t believe they ever let people do after 4 hours of training). I looked up at others floating down after me and thought “How can I ever do anything that is beyond that?” Everything around me seemed easy and devoid of fear (for a few months anyway).
I didn’t have the language for it them but that was the comfort zone being stretched to breaking point and then easing off a little so that now other things seemed easy. Its liberating and slightly addictive. And it can be amusing sometimes to go beyond what you know and to then look at what you were afraid of – and it seems sometimes so pitiful and small. How could I possibly have been afraid of this? Like those horror movies that have you on the edge of your seat until you see the monster – the source of the fear and tension – and it looks like a guy in a costume. Then the movie is rendered devoid of fear or even boring (eg: The Village….)
Well it’s just happened with the diabetes. I was thinking that I should write a little more about how I have been managing the diabetes on the trip as I know that I have learned so much from others doing so before me. So I started thinking of what I was doing that was special, the tricks, the tips, the brave ways I was struggling with adversity as a diabetic in developing countries…..and absolutely nothing came to mind. Nothing at all. There was nothing special or brave or different. Absolutely everything I was doing was what I would do at home.Everything was completely and utterly normal.
Sure the control over what I eat can be a tussle. I have to relearn what is what is on a menu in every country we go to – but apart from that everything is the same. You adapt, you change insulin regimes, you measure (again and again) and you work it out.
(I am sure to outsiders it can look highly amusing. Imagine a bustling Asian city street, food vendors everywhere, people calling to you to get you into their restaurants. Its 5:45pm, I can feel my sugars slipping, the kids are tired from walking all day. I am powering ahead, checking out menu after menu to see what will work for because I just can’t stand the thought of rice or noodles again but then I am not sure what else will work for the diabetes. I’m getting less and less rational, walking too fast, weaving between crowds of vendors, the kids are trailing further and further behind. Me pushing on – searching, searching for that elusive diabetic friendly, low GI meal. Then suddenly I find it and race in, sit down and point hurriedly to something on the menu as the kids and Mel straggle in behind me.)
But the thing that has struck me the most was reflecting on everything I thought and worried about before I left. Back in Australia before we left I was petrified. I worried about what I’d eat, if my insulin would survive, if I could ever replace diabetic supplies if I ran out, what would happen if something went “wrong”.
But as I sit here in Hanoi writing this it all seems a little strange to have worried so much. A lot of the fear is completely irrational.
- The world’s cuisines are wildly diverse – of course there is going to be something nutritious, diabetic friendly and beautiful to eat that is easily obtained.
- With care and focus we have managed the insulin transportation and storage. The local hotel owners have been supremely helpful and understanding as soon as I can explain in sign language what I need.
- There are diabetics all over the world so of course there are diabetic supplies all over the world.
- And in terms of things going “wrong”…..now I think of it I can’t think of one diabetic related thing that would go so wrong I would need hospitalisation. The really serious diabetic medical issues are usually slow onset. The impact of long term mismanagement. Being over here has no impact what so ever on the acute stuff – so it is not worse or any different to home. The worst that happens is I don’t get my favourite flavour of fruit juice when I hypo (and I have almost run out of my favourite jubes).
Not very big problems really.
There has also been a massive revelation of sorts about what food I actually need to survive. You see as a diabetic you are told on the first day of diagnosis that you must eat carbohydrate – about 250g a day – in order to maintain your blood glucose levels. So you spread that out over a day and balance these sugars by taking insulin. It never even occurred to me to ask: “So what happens if I just don’t eat carbs?” No carbs, no insulin right?
But I never questioned it. I did what I was told and focused on eating the best carbs I could find – grainy, low GI, non processed.
But an email from a friend – a father of a newly diagnosed type 1 diabetic daughter – completely exploded my concept of up and down. I will explain more below but as he demonstrated there is a growing group of diabetics who are managing diabetes by completely OMITTING carbs. No carbs, no need to inject insulin (despite a small residual amount to cover incidental sugar intake).
In case you are wondering – omitting carbs is quite hard to do. Sugars are in everything it seems. But it is possible. So I experimented for periods of several days just not eating any carbs and not taking bolus insulin. To my astonishment everything just worked. More than just worked – it was better. Way better.
No sugar spikes or drops. Food options exploded (mouthwatering, aromatic sticks of satay tofu and chicken from roadside BBQ stalls) so that I didn’t have to search high and low for the “right” carbs. It was liberating and profoundly exciting. Suddenly the fear of getting the “right” food evaporated and I realised I was surrounded by what I needed.
And it made me think of my comfort zone. Generally there are two main reasons people don’t test their comfort zone. First they may know about their fears and not be ready, confident or have the capacity to push them. Second they may not even know that a perceived limit is able to be pushed. Scratch a little deeper and the medical world is full of stories of people being told “You’ll never walk again” and two different outcome occur. One person spends their life believing it because a person in a position of authority told them that was the truth. The other thinks “I wonder if that limit is true….?”
I need to do a lot more research on the “low carb” diet for diabetics but just the small action I took that flew in the face of conventional practice made my diabetic world turn upside down. It was like a door opened into a whole new world to explore. And right here and right now it gave me confidence and a sense of security. No Weetbix in the middle of Vietnam? No worries – just give me a chicken salad and I will skip my insulin.
So I have nothing special to write about really. After a few months of travelling it seems that managing my diabetes on this road trip has become very very normal -maybe even easier since questioning the accepted wisdom about a diabetics “correct” diet. The usual frustrations, planning, calculating, thinking, preparing are absolutely identical to home. But it makes me look back to how scared I was before I left and I realise that the fear was because I had absolutely no idea what travelling with diabetes was going to be like. It was the fear of everything I did not know – which now I know. Well, a few months in and the monster looks like a guy in a costume.
Some more pragmatic information for other diabetics:
As I mention above one of my greatest concerns was the quality of carbohydrate and obtaining low GI foods. Asian breads are generally white and sweet and they don’t hold back on the refined sugars. You should see how much white sugar they throw into the mouth watering Thai curries when they are cooking. Finding brown, grainy breads has been impossible in some remote areas but relatively easy in the larger cities and supermarkets. Some great breakfast cereals are now common across Asia as are oats (which I carry a small bag of for long bus/train trip no-meal emergencies).
But what has really liberated (end excited me) is the information that my friend sent through on diabetics experimenting with high protein, low carb diets. He is the father of a newly diagnosed daughter with T1. They refused to take the “this is your life from now on” lying down and started looking for others taking different paths. They put me onto some early research that a doctor – Dr Troy Stapleton is unearthing and exploring more (for starters look at this ABC program http://www.abc.net.au/radionational/programs/healthreport/low-carbohydrate-diet-to-manage-diabetes/4880362).
I won’t go into it as you can do so yourself and make up your own mind. It seems that the low carb diet has been common amongst body builders for decades who have been quietly using it without much fanfare. When I started looking it also seems that many diabetics are starting to utilise it with pretty amazing anecdotal reports (just read the forum comments on the ABC website).
So in Thailand, surrounded by high starch, bad carb foods but tonnes of protein meals (chicken, beef and tofu) I started experimenting. Not only did it make my life immeasurably easier (I was surrounded by amazing food) but my sugars became more manageable and controlled. It was almost like my sugars were in slow motion – none of the sharp peaks and drops that I thought were just my lot in life. Dr Stapleton uses the analogy that managing diabetes by consuming carbs and taking insulin is like trying to keep a fire at a certain temperature but all you have to use is petrol and water. Training your body to use proteins and fats is like using coal. A lot of what he and others are proposing flies in the face of generally accepted diabetic dietary advice and also the generally accepted “food pyramid” that seems to be a somewhat blindly accepted (and maybe misguided) dietary doctrine.
Anyway – it is something very interesting to maybe explore as I know I will be when I get back to Australia. There are still questions about impact on cholesterol which is my major concern.
For diabetics travelling though it reduces a great deal of concern about finding the “right” food and increases the options.
As for other diabetic related things:
- So far the insulin has travelled really well. The Frio evaporative cooler packs have been great. I am carrying about two months supply of insulin in them (even the large ones aren’t that big) and every time I have checked inside them they seem to be nice and cool. We have moved from more humid regions into a dryer one and they work even better here due to the dryer air.
- The cooler packs with gel freezer sachets only seem to last 4-5 hours in the tropics before they are pretty close to room temperature. Packing the freezer packs deeper in side our day packs adds a little time. This is the most pressing thing to deal with as we travel as amongst the logistics of gear, buses, backpacks and three kids it is easy to forget about. It is a godsend having Mel there keeping an eye on the whole scenario as well as me. But so far I haven’t had any insulin go off.
- As most diabetics know – it’s all about your little systems. Arrive in the hostel, insulin in the fridge, Mel ties her “reminder” tag to the outside of her daypack so that when we are leaving we don’t forget the insulin. When we leave we have got into the habit of doing a mental check before we actually drive off or get on a bus.
- The mandarins in Vietnam are brilliant. Sweet, juicy, everywhere,cheap. Two of those when my sugars are low and it raises my BSL perfectly and gets me through several hours on a train no problems.
- As for other diabetic things: hypo lollies everywhere, fruit juice everywhere, breakfast cereal everywhere. Perfect food everywhere (when you break the habits from home about needing the same things everyday at the same times).
I hope in some small way helps other diabetics about to travel.
Matthew, you and Mel are inspiring me with your thoughts and stories told so magnificently. Your beautiful daughters are learning so much from this trip, primarily from the strength, courage and determination of their parents.
Have a wonderful Christmas together and continue your adventure.
Tricia Ferguson, Croydon NSW
So nice to know that you are reading the stories. Have a great Christmas. Are you making it to the extended Shanahan family gathering?
Thanks for this. We are just about to head to Thailand with my daughter who was diagnosed just over a year ago so your blog is very inspiring – and comforting.
On the subject of carbs/no carbs, we (our whole family) have cut out carbs after 5 pm. This means my daughter’s levels are nice and even through the night – and its probably good for the rest of the family too. I think its much harder for kids to cut out the carbs altogether.
Thank you too for your terrific blog. Happy travels!
Hi Matt. It’s so inspiring to hear you talk about challenging those models that may straightjacket how we manage ourselves. Self agency is so important with a debilitating disease, such as Diabetes. Thanks to Mel for her efficiency/and loving kindness in supporting your special needs. Please give the girls a hug for us. Kath and Roger
Great to read Matt. Low carb diet makes sense and should reduce insulin needs (but not abolish insulin completely for T1D of course). Then have to sort out source of energy, which will be fats; then see what happens to the cholesterols etc. In Mona Vale there is an attempt to cut back the carb intake but not yet increasing the fats. A gentle start and will keep you posted.