Vive le weekend, vive Nightscout, vive la France et très bien Amy

DSC_2651This weekend saw Jane and I go away for the first time without the kids, celebrating Jane’s 50th birthday with a surprise weekend to Paris. Amy, Emilia and I had been planning this for ages, they were both happy to be left alone, probably happier than I was feeling about it if I’m honest. At almost 18 and almost 15 Emilia and Amy were more than capable of looking after themselves, Type 1 issues aside.

Thursday 12th November

As we sped into France on the Eurostar on Thursday night, I waited for the Fajita-induced glucose spikes to hit my Pebble watch with the data sent by Nightscout. I would have preferred that the kids didn’t start with the most evil of glucose-spiking meals on our first night away, but this was their choice and Amy knew it would need managing.

Nightscout for a trip like this was a Godsend, although typically our house WiFi had started going wrong minutes before we left the house and Amy’s phone had run out of 3G data allowance. Somehow a low 3.2 notification got to my phone and nervously I thought I’d check-in with Amy and request she check her level.

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At 10:30pm, as Jane and I went out to a cabaret I bid Amy bonne nuit.

Friday

‘Bees?’ is my way of instantly making Amy laugh, it’s a Cards Against Humanity reference.
I meant to say ‘Miss’ not ‘Mid’

So I didn’t get to see the nice 22mmol she hit between 2am and 3am as the WiFi had stopped but Amy had managed herself really, really well.

Jane and I had a fabulous time on Friday, walking from our beautiful peniche for three nights on the Seine to Invalides and then to the surreal catacombs Jane wanted to visit – ugh! Then up Montparnasse at 5pm to watch the sun go down and the City of Light start to glow. On floor 59 we pulled up two seats and watched the Parisien lights appear before heading off to Bouillion Chartier for dinner.
At various times throughout the day I’d glanced at Amy’s glucose levels on my Pebble, she was doing a grand job.

Friday 13th, a night of terror in Paris

I checked my phone when we got back to the houseboat and saw this from my friend Carolyn
pleasecheckin
I checked in with Carolyn and got some twitter replies from other Twitter friends. We’d heard sirens, a lot of sirens, but had thought nothing of it.
Within seconds my thoughts turned to the kids and knowing Emilia was at work I messaged Amy.
message

Dozens of private messages had arrived via Twitter and Facebook, so I sent another message out:parispressrelease1

Saturday 14th

Amy’s glucose levels overnight had been good, Emilia’s (non-T1) on the other hand were probably another story: she’d been awake half the night worrying reading the newsfeeds.
As I fell asleep the night before we thought it was a single shooting or explosion, nothing like the devastation which actually took place. Only in the morning did we realise the extend of the night of terror Paris endured.

Logging in to Facebook it suggested that I might be in an area affected by the terrorism and asked two questions: was I there – yes; was I ok – yes. What a great idea this was, especially when I learned that Facebook friends had this information right at the top of their newsfeeds when they logged in.

Message upon message rolled in, phone call upon phone call. I put out numerous messages and set up a network of people all set to check in on the kids at various points throughout the day.
I guessed Amy and Emilia were still sleeping though; should I wake them, should I leave them sleeping? I waited a bit, I couldn’t wait long though to hear their voices.

A subdued Paris

With most of Paris shut down, hundreds of sirens going off and armed police roaming the streets I peered out of the houseboat’s windows and gazed upon an eerie silent Paris still moving. The absence of tourist boats made the river a quiet place but people were still jogging, cycling and living life on the Rive Gauche.
We spent the day walking around the silent Parisien streets using ghosttown Metros to get around. You couldn’t help but feel the sadness of the city.

Back to the kids

Even with everything going on, Amy and Emilia had dealt with everything brilliantly. We were of course remotely checking on Amy several times a day but with the odd nudge managed her glucose levels superbly over this trying period.
And the result?
Nightscout estimates over these 4 days she’d have an HbA1c of 6.0%.
Wow
4 days estimate

Being careful with your kit? Think Again – Diabetes Blog Week, Day 5

blogweek6

So I’m a little late with Day 5’s blog due to spending yesterday travelling to and talking at a conference for paediatric diabetes health care professionals, giving them a parent and child’s (along with Amy of course) perspective of the care we receive.
For Day 5 of DBlogWeek the main topic is about the food you’ve eaten or your normal/ideal food day. Since I’ve missed this and given the travel and weird food options at points yesterday I thought I’d pick the ‘Crazy Stories’ wildcard.

Not so crazy

So this isn’t a crazy story as much but it is one a little that was crazy at the time. I’ve told it before so apologies if you know it already.

The blurb

In 2011 we backpacked around India for four weeks, using trains for our 2700 miles of travel.
Our first overnight train was a big deal for us as it left Jhansi heading for Aurangabad, a near 600 mile, 18 hour overnight ride. What made this bigger was that this was a popular train and all spaces are booked way in advance, like they are for most of India’s trains – you can’t just normally turn up for these long distance trips. If we missed this train there was no easy option left to us.

Follow the first rule of kit packing

On a trip where you won’t be able to easily get supplies the first rule is obviously take way more than you need, think of the worst case scenario of how many test strips, needles etc you may need and add a bit more ‘just in case’.
I would rather carry triple the kit Amy’s diabetes needs and forego some things I’d normally take as I can always buy more clothes/medical kit anywhere but specific D kit isn’t so easy, well not when you’re going to be staying for 5 days in places like Hampi, miles from anywhere by road, only one train a day in/out and no big pharmacy anywhere close.
We probably took enough kit for a small town.

The second rule of kit packing

The next rule is to split your kit between bags so that if one got lost or stolen then you’d still be okay for a good few days.
As this was our first trip dealing with Diabetes – it was only 7/8 months after diagnosis – we split our kit between Jane’s daysack and my daysack and didn’t put much in our main rucksacks, just a spare meter if I remember correctly.

Raining, rushing, ruing

Waiting for our Tuk-tuk – see the yellow/green vehicles in this video if you don’t know what they are – the monsoon rains opened so when he arrived the bags were packed really quickly; there wasn’t much room.
The rucksacks were loaded and unusually we put our daysacks in the back too as tuk tuks are pretty small inside for two adults and two kids, Amy always had to sit on my lap. The driver closed the rear rain cover, tied it down using straps and everything was secure and we were ready to go.
We headed off for the train and after a few hundred yards the driver gets a phone call. Very unusually he didn’t continue driving but stopped to answer it.
Two men came to the tuk-tuk and I thought at first they were hassling us for something, hawking their wares or just asking for money, a sight we’d got used to in India although unlike elsewhere in the world it is rarely aggressive over there.
But hold on, they’ve got our daysacks, both of them.
What’s going on? Have they stolen them out of the back?
Both daysacks are soaked, they’ve clearly been in the rain, they look a bit muddy too.
Then it dawns on us: both daysacks – so that’s ALL of Amy’s diabetes kit – had fallen out of the back of the Tuk-Tuk and the men had chased us down the street trying to return them.

Feeling quite sick

In an instant I realised what this could have meant to us if we hadn’t had discovered the problem until at the station. No kit for 18 hours and then a real struggle to get stuff during the couple of days scheduled in Aurangabad.
I felt sick to the stomach.

Faith in humanity restored

Seconds later I realised what a difference these two guys had made to us so in a flurry of gratitude I whipped out my wallet to give them a little something for their trouble, except it wasn’t a little something it was a lot of money. But it didn’t matter to me and I was happy to give it – it was potentially the equivalent of one month’s wages to them depending on what they did.
They refused. I insisted, they refused again. They were just happy to reunite us with the bags.
Faith in humanity restored.

We never travelled with our daysacks in the back of a tuk-tuk again.

If you’re interested in reading more about our travels in India checking out our blogs:
On general travel in India with Diabetes see the look at the India section within this blog.
Monsoon Meandering, a four week backpacking trip over 2700 miles, a few months after Amy’s diagnosis.
Big Cats & Holy Ghats, a three week trip mainly around Rajasthan and focusing on wildlife safaris.

Amy’s school trip to Germany, 27 days after getting insulin pump


27 days after getting her insulin pump Amy went on her first European school trip, a two night stay in Koln, Germany.

Too soon after getting the pump?

When our DSN (Diabetes Specialist Nurse) called to let us know Amy would get her pump on the 20th June I was elated, before seconds later I remembered about her school residential trip to Germany, which was only a few weeks after. The DSN didn’t seem too worried though as long there was a clear 3 weeks before the trip – there was. This meant that Amy had to go straight on insulin when getting the pump, rather than spend a week using saline which some clinics do to get people used to using their new pump. Our DSNs confidence made us confident.
Amy would need to do a set change during the trip so would 27 days be enough to get used to doing this? By herself? Without us?

Negative press = worrying parents. Would the school still let her go?

In the news recently there’d been so many instances of kids being refused residential trips at the last minute that I attended a Parents’ Clinic run by the school, deciding to tackling this straight on.
I went in armed with articles such as ‘Sheffield schoolgirl with diabetes barred from trip‘ and ‘Diabetic lad is barred from school trip of a lifetime‘.
Their initial reaction was amazement, that schools would refuse to take kids with diabetes. I took that as a good sign.
Their official response came back a couple of days later: they just wanted a letter from the DSN a few days before the trip to say that Amy was fit to travel. They also wanted us to come in and discuss care requirements with the person who the designated pastoral carer for the trip.

The School’s Pastoral Carer

We already had great respect for Mrs L – the person assigned as the trip’s pastoral carer – as she’d helped our eldest daughter with some issues on her trip three years ago, so we were glad to hear she was going on this trip.
Jane went to meet her the day before the trip with a list of things to do, which featured a key message: you should not need to do anything except make sure she’s okay; you don’t need to inject her; you don’t need to touch her pump.
I felt it was important – after the articles I’d seen elsewhere – that the school didn’t feel like it would be a chore taking Amy on a trip and I didn’t want Amy to think that she needed to rely on others to manage her diabetes, which in turn would hopefully give her confidence. In general this worked very well, a few issues aside.

Three weeks to get the basal profile sorted

The DSN wanted 3 weeks between getting the pump and the trip so that adjustments could be made to Amy’s basal profile to get it right.
In turned out that 3 weeks was enough to get the basal profile as close as possible and more importantly make us confident enough to make slight tweaks ourselves.

Wednesday 17th July, Day one

Waking up at Stupid O’Clock

The coach was leaving at 4am. which mean at 3:30am wake up call. It also meant there was no chance of doing a set change that early in the morning, so one was done the afternoon before, with another one to be done on either Thursday on Friday, by Amy.
We knew that Amy’s basal profile was pretty good so didn’t feel the need for her to test her blood glucose level at such an ungodly hour.
Arriving at the school, there was a mix of excitement from the kids and anxiousness from the parents. They felt like I did three years ago when I packed my eldest off on the same trip. I found it hard to appreciate their fears considering everything we were now worrying about: if it all went wrong it literally could be life or death.
Still, I made sure Amy had her mobile so she could text me her blood glucose check results and ask for advice if needed. It was a long wait.

Diabetes? Here? Nah!

A key thing any parent would want for their kid on a school trip is that diabetes doesn’t feature very highly so we told Amy to enjoy herself, get the most of the the trip but keep safe.
And she did.
Whilst she never texted me her results until a lot later in the day she clearly felt in control enough to not need to call me either, which was great, if not a little concerning for an incommunicado parent.
Later in the evening she sent her BG results through:

Amy's first day BG results

Thursday 18th July, Day two

Lindt and excercise

Today was the day which worried me most: it started off with a visit to the Lindt chocolate factory and also featured a lot of walking and a climb up Koln Cathedral’s 509 step spiral staircase.
We exchanged a few early morning texts one of which from Amy contained ‘is it okay if I have some chocolate at the Lindt factory?’. Bless her, as if I’d say no, knowing that she’d been looking forward to this specific visit for months. I looked up some nutritional values on Lindt’s informative web site and text Amy back carb values for stuff she likes. At Lindt she bolused three times in the space of the hour long visit, something she would never have done with injections so YAY for the pump, it meant she really enjoyed the visit.
The Koln Cathedral visit didn’t provide any problems either.

Infusion set change – without us

Amy had done all of the set changes herself, without us doing anything but with us watching and encouraging. Before the trip she wasn’t fazed about doing the set change and unsurprisingly she did it without issue, but under the close eye of the school’s Pastoral Carer.

Count the boluses

I’ve said before that Amy hated injections so wouldn’t often choose to snack anything over 15g carbs, and even then only once between meals. So the pump has given her the ability to do this but maybe, just maybe, 10 boluses in a day is a little too much. Well actually no, it isn’t, everyone else was snacking and now Amy’s pump meant she could too, without worrying about soaring or dropping levels.

Today’s blood glucose levels

7.8, 14.9, 4.6, 8.3, 4.1, 5.1, 3.5, 5.9.
We can discount the 14.9 pre-lunch test as it was 70 minutes after the first Lindt chocolate and 20 minutes after the last.
This means she only went a maximum of 0.5 out of range all day.
I’d call that winning.

Friday 19th July, Day three

A morning of stress induced highs

This morning she’d woken at 6.6mmol, another great result.
The trip had been going so well for Amy, she was having fun and her levels were pretty great all round. Diabetes itself wasn’t getting in her way at all.
That was until it was time to pack up and one of her room mates got all stroppy and pushed the other room mate into a wall, causing an untold amount of stress and emotion. I wasn’t surprised to hear about this event as I’ve never understood why Amy is friends with this girl, she’s always be horrid to Amy, so why share a room with her? The other girl has been one of Amy’s closest friends forever and one we very much trust to look out for Amy.
I was surprised how the stress affected Amy’s levels, shooting up to 15.5 which took a couple of corrections to shift over the next few hours.
By 1pm she was down to a respectable 5.4mmol.

Amy, do you really need Pizza for lunch?

The kids had to buy their own food on the last day, all opting for Pizza. I knew that a combo-bolus would be required but we don’t eat Pizza much at home and hadn’t experimented with combo -boluses for it. She wasn’t keen but I managed to convince Amy to do a four-hour bolus; I knew it needed to be longer but not when she’s by herself in Germany. We decided we’d run the risk of being higher later on…oh how that came back to bite us.

The case of the too-short-combo-bolus, the coach trip and the over-zealous teacher

Following Amy’s Pizza was the long coach journey back to England, sitting aimlessly on a coach for hours and hours. Combine this with the pizza and it’s easy to understand why Amy’s BG readings went up to 13.9.
What we didn’t expect though was the lovely Pastoral Carer going a bit overboard. She got Amy to test for ketones and even though it was very low she got her to test again minutes later. Then another blood test, then another, then another.
She did 9 blood glucose tests within 3 hours and a few ketones tests too!
Clearly this was down to us not clearly communicating what Amy needed to do if high; we’d concentrated on the lows, not the highs. We’d spoken about ketone testing but somewhere the hypo-15-minute-rule and ketone testing rule got mixed up. For the record, I’d rather had an over-zealous teacher than one who didn’t care or check on Amy.
It clearly threw Amy off balance and made her panic a little, which in turn probably raised her levels higher. Since, we’ve had a chat about why she went high which has renewed her confidence in her management of her diabetes.

In short…

Friendship incidents aside, pizza bolusing aside, everything went perfectly for Amy. Diabetes never got in her way, or stopped her from doing anything, she did everything her friends did.

Amy’s JDRF T1Kids magazine article about India

My daughter, an author, wow

Today the latest JDRF T1 Kids magazine hit the doorsteps of houses around the UK, being delivered to thousands of children who have type 1 diabetes.
I’m immensely proud that Amy has a two page article within it and even more proud that a picture I took of her fills the front cover.

Thank you JDRF

I’d like to thank JDRF for many, many things but especially today for printing Amy’s article.
Special thanks go to Kate from JDRF, who has been so helpful organising this from their end, encouraging us, giving us ideas and creating the final article from a mass of words sent to her.
Thank you Kate for giving me permission to reproduce the article on my blog.

How did it all start?

We’ve been subscribed to JDRF’s T1Kids magazine for a while now and have read the articles with interest. In early January, whilst thinking about how to motivate Amy as part of my New Year’s resolution I came across a request for articles for the magazine.
Well, let’s think…hmmm….my newly diagnosed 10 year old backpacked around India, had a great time and survived. Yeah, that’s an article. Actually though I first suggested that JDRF read Amy’s auto-biographical blog article on her diagnosis and only mentioned India as ‘maybe you’d be interested…’.
I pinged off an email to JDRF which got to Kris – whom I’ve only just realised is someone I’ve followed on Twitter for ages. He passed it straight to Kate who’s in charge (I think) of producing the T1Kids magazine. She was very interested in the idea of an article about India as they’ve not had many/any like that before.

From blog article to magazine feature

First I needed Amy to do the full article for our blog as this was to be the final one in a 14 part series about our trip to India and dealing with type 1. It took a long time to get round to this due to other commitments. Here’s a link to the series of articles: Travel in India with diabetes and Amy’s India blog article.
The article was sent to Kate, who then reworked it to fit the magazine style. Amy had written so much that it gave Kate a hard time trying to figure out what to cut.
A few proof checks here and there and on 24th April we received the pre-print version in all it’s glory.
I was amazed how good it looked, all typeset with the paper elephants everywhere.
Amy was so chuffed.

Opportunities through Diabetes

This is a shining example of how opportunities to break out of the box come from having something like diabetes.
Don’t get me wrong, I’d prefer that Amy never wrote this article because I’d prefer that she didn’t have diabetes, but she does so let’s just get on with it and seize opportunities like this when they occur.
Well done Amy for seizing this opportunity. So proud.

Do you want to get hold of the magazine?

If you just want to read the article you’ll find it below, but perhaps you want to subscribe to the magazine for you or your child to read.
Here’s the links to do just that and the good news is it’s free, although I’m sure you’ll give JDRF a small donation whilst on their site 🙂
Order a single copy
Subscribe to the magazine

The front cover

T1 Kids Magazine front cover

The main article

The main article is split across two facing pages but I’ve split it so you have a chance to read it.
If you can’t quite read the images on this page either click them to open them up in full within your browser, or better still just use CTRL and + to – to zoom your browser in and out (works with Firefox, Chrome and Internet Explorer). In some browsers you can hold CTRL down whilst scrolling your mouse’s scroll wheel.
T1 Kids Magazine left page
T1 Kids Magazine right page

Travel in India with type 1 Diabetes – Amy’s story (viewpoint from a child with diabetes)

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is the last post in the 14 article series about that trip and its planning and how type 1 diabetes played a part.
The previous posts are full of facts and viewpoints but this one is the most important, it’s the story from Amy about what she remembers about the trip and adjustments she had to make.

Hey, the name’s Amy.

I’m 12 and I was diagnosed with type 1 diabetes on 29th December 2010.
My family and I were already planning to go to India the following summer and we were going to go to Ladakh which is in the Himalayas. After I was diagnosed my parents quickly started to wonder whether we should go to India or not. Through his research Dad had found out that getting altitude sickness was a real possibility on the two road trips through the mountains and he wasn’t happy about dealing with that at the same time as diabetes, both of which we knew nothing about. So it was decided, we would not be going to India that year. Thinking back now, they were probably trying to figure out how to break the news, when they heard me say to the doctor “Does this mean I can’t go to India any more?“. It was this that changed their minds. We were going to go to India (even if we went somewhere different) and nothing was going to stop us.

 

Changing the trip plan

Whilst thinking of an alternative trip my Dad tried to think specifically what I liked the most about India; it was trains. He decided that we should go on lots of them, just for me.
Altogether we travelled around 2700 miles on just 8 trains and the trip was organised all by ourselves! No help whatsoever from travel agents or such. We saw monuments, holy places, tombs, caves, palaces, trains, beaches, cities and we even went to a waterpark – we were the only ones there! How cool is that!? All of that for a whole month.

 

Flying, excitement, worries about injections

I have been to India once before – before diabetes – and I loved going on the plane so I was really excited about going on it again, but I was worried about the injections and the food. Before it came to mealtime we told the staff that I was type 1 diabetic and they went and found an apple for my pudding. Also they gave me my food first in case I had to count carbohydrates (which at that point I didn’t because I was still in my honeymoon period but it was still very thoughtful of them). When it came to injection time I was worried and didn’t know how we would do it, but my mum, who was sitting next to me, set it up and did it in my arm and the best bit was I didn’t even have to get out of my seat!

 

I love India’s trains

Trains are exciting because I barely use them in England and there’s very few sleeper trains, which I love. A sleeper train – clue’s in the title – is a train which has padded benches for you to sit on during the day, which then turn into beds for during the night. India has so many of these because the distances are so great, some trains go for three whole days from start to finish. We travelled thousands of miles across India by train using upper class, middle class and lower class trains. The poshest train was from the capital city (Delhi) to Amritsar (the hottest of the places we went). We had padded, reclining seats and were served meals by waiters in traditional Indian uniform, it was the fastest train we took.

 

Overcoming fears of injecting on the trains

I don’t like any distractions when I do my injections at my house so I have to have the light on full, have everyone completely still, have no talking or T.V and no cats moving in the room. So when I did the injections on the trains I had to adapt but everything went well as we came up with an awesome method. First we would wait until we were near a station, then when the train stopped I would have my injection ready to whip out and do. If I did it as soon as the train stopped, then I would be sure that it wouldn’t start to move whilst I was in. But I love trains, and I wasn’t about to let diabetes ruin them for me.

 

Weird ceremonies in Amritsar

Whilst at Amritsar we saw the stunning Golden Temple and we witnessed the weirdest ceremony ever (video) – where they close the border gates between Pakistan and India. There were men dressed in Indian army suits with stupid fans sticking up on top of their turban! There were people running up and down the road and when they got to the Pakistan border, they waved the Indian flag in their faces. As the border closed the soldiers goose stepped up to the gate and almost stuck their tongues out at the Pakastani soldiers, however it was all in good humour…or was it?

 

Loving the Homestay adventure

One of the many adventures that we had in India was going to live in a Homestay. This is where (clue’s in the title again) you stay in one of the local’s homes. We knew that we were going to the Homestay and that they’d be poor, so we decided to bring our old clothes and school uniforms. We gave it to them and although they were girls clothes, and our hosts only had boys, they took them gratefully. We also gave them a frisbee and a bat & ball which they loved and they taught me a new game that I can still remember now. Coming back to the diabetes side of it, I did my injections after my meals because I decided three days in to the one month trip that I didn’t like India food any more. What a fail. It turned out that it was just one thing – paneer, a type of cheese they use in curries – which I’d gone off.

 

Jamming in Hampi

Another place we went was Hampi which looks as though a giant has scattered some pebbles (what we would call boulders) in totally random places. Hampi is a small village with lots of huge rocks randomly placed around the landscape. It has a many temples, a market, a river and plenty of places to stay. It was so beautiful.

I met a music man, he came from far away,
now I can play (what can you play?)
I play the kololu.
Kolo-kolo Kololu Kololu Kololu Kolo-Kolo Kololu Kolo Kololu.

The music man was called Gali and he taught me to play the Kololu (think of a flute then turn the buttons into holes and make it wood) for free. I decided to buy it but we didn’t have the money with us right then so he said take it and pay me back tomorrow which was really nice of him as he didn’t really know us.

 

The world’s best Mango Tree

There is only one word that can describe The Mango Tree; magical. The Mango Tree is a cafe/restaurant where you can sit outside to eat and watch the river and all the wild life around it. The Mango Tree was a little walk away from where we were staying but it was worth it. We had to walk through a banana plantation and when we got there I had a Banana Paratha and a Banana Milkshake. We sat on the straw mats on the floor and waited for our food and then I spotted a Kingfisher in front of the river!

 

Lakshmi the Elephant takes a river bath

Talking of animals, one day in Hampi my family and I went down to the river to see Lakshmi the Elephant having a wash. It was funny because they asked if anyone wanted to be blessed by Lakshmi and my mum was determined to, but when she saw that actually it meant she would have to go in the river and get a full soaking of water from Lakshmi, she decided not to.
As I said earlier, I have been to India twice, and last time I went, we went safari-ing and we saw many animals including an Indian Rock Python and a Tiger chasing a Wild Boar!

 

Getting my first tattoo

One of the many things that India is famous for is Henna. Henna is an ink which is used to draw a pattern onto your arms or legs. It stains your arms or legs until two weeks later when it eventually fades away. Generally it is used for women on special occasions such as their wedding day however when I was out in India I got my Henna done within the last week so I could show my friends. I had it done on both my arms and I bought some Henna powder so I could make some more at home, and I still have it after one and a half years.
Here’s a video of me buying henna/blocks at the market in Orchha

Thank you for reading about my adventures, I hope my story makes you realise that diabetes doesn’t have to stop you doing things you want to.

Amy.

Travel in India with type 1 diabetes – summary of problems

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 13 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is all about how diabetes did or didn’t affect our trip. It’s a summary of what’s been written in some of the previous articles, but here’s it’s all in one place.
This is the last India article from myself as I’m going to let Amy, our type 1 diabetes daughter, summarise the trip and all it meant to her. Her article will be up quite soon.

My memory fades

The India articles are a retrospective view as we went on that trip in August 2011 and here I am writing about them 18 months later. I have wondered whether my mind has forgotten certain details, ones that could be crucial to a person with diabetes attempting travel to India but having triple-checked my facts I hope I’ve got everything correct and moreover covered everything needed by someone thinking of doing a similar trip.

A successful trip?

Fading memory or not I can say that the trip was a huge success.
Diabetes did not stop us doing the trip.
Diabetes did not hinder us through the trip.
Yes, we had the think about things a little and we certainly had to carry more stuff with us on a day to day basis, as we do in the UK.

The biggest problem

Without a shadow of a doubt the biggest problem we faced was running out of Dextrose glucose tablets.
Yes really, that was the biggest problem and one that’s so easily prevented and one that turned out to be easily solved.
I’d done some research beforehand and it seemed that everywhere would have them but we just couldn’t find anything similar in India in the places we looked. We looked in pharmacies, we looked in supermarkets, in hole-in-the-wall stores but nothing. The only glucose we could find was in tubs used by gym-goers.
In the end we just “borrowed” sugar cubes from places we had dinner or drank tea and carried them in the hypo kit.

Changing bolus injection timing

The other spanner which really threw us was Amy’s decision a few days into the trip that she didn’t like Indian food anymore. This really took us by surprise and it took us a while to realise what was going on.
Her decision manifested itself in a few hypos early on which happened because she was injecting before the meal for what she expected to eat but then only eating a bit of it. We switched to injecting after the meal, after we’d seen exactly how much she did eat. This resolved the hypo problem.

Timing of meals

At home we try to make sure meals are around a similar time each, something we’ve only done since Amy got diabetes.
In India we really (,really!) let this slip and it’s something we should have worked harder to keep control of but it was difficult as we were meeting friends and families we didn’t know very well.
A good example of this were when on the first Sunday we were taking out to lunch and a friend of mine wanted to take us to a very popular South Indian restaurant in Connaught Place, one of Delhi’s very popular areas. It was crowded and we eventually go in at 2pm, eating at 2:45pm. That night we had been invited to another friend’s house for dinner and we were probably being too polite when they asked when we’d like dinner, with us saying that we were happy with whenever they wanted. In the end we didn’t start eating until 10pm, way after Amy had taken her basal (Levemir) injection. On reflection we should have explained the situation to them, they would have understood.

Worries about missing injections

In the first few days our bodies’ time clocks were completely out. The first 3 days saw Jane, Emilia and Amy all waking up so late that the first meal of the day was lunch, within 30 minutes of them waking. Consequently, Amy missed out on breakfast and the associated injection, but did this matter? At the time it made sense that if you don’t eat you don’t need a bolus injection to counteract the carbohydrates you haven’t eaten. I’m sure this isn’t a good idea for the long term but over short time period it seemed more appropriate than waking Amy up to eat a breakfast she didn’t want/need at a time when her body needed more rest.

The heat

We really expected the heat to affect Amy’s blood sugars but in all honesty she was the one least affected. On one particular day I found it difficult to keep going and it was Amy who spurred me on. Amy did have a hypo in the middle of a hot day in the middle of a market and we wondered if this was the shape of things to come, but it wasn’t, it was just one of those things which happens in the UK too. We’d already walked a fair bit that day so it was probably tiredness.
Heat did not affect her.

Injections on trains

Amy’s forthcoming article will talk about this in more detail but in summary she found a method of injecting on the trains which got over her fear of injecting when the world around her is not completely still: we simply timed our meals to coincide with stops at stations.

Finally, I’ll leave you with a photo of my favourite place from that trip.

Travel in India with type 1 diabetes – the homestay adventure

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 12 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is all about our biggest worry and adventure, two nights staying with a local family in a small village near Orchha.

An adventure awaits

We departed Gwalior by car and headed toward our destination, Orchha, which is a very small town on the River Betwa.
Our accomodation for the next two nights was to be in two of the homestays run by Friends of Orchha. Jane and Amy staying with one family, Emilia and me with another.

What’s a homestay?

A homestay is where a family opens up part of its house to paying guests, to give them a little income and to provide the guests with a completely different experience to staying in a hotel.
To read more about ‘our’ homestay take a look at either the Friends of Orchha website or our many homestay articles on Monsoon Meandering blog.
Homestays usually have rooms for only two people and whilst Friends of Orchha said we could all fit in one I decided that I’d rather split us up and share income between two different families. The cost per room for two people was only Rs500 (£7) per night, so having two rooms only cost Rs1000 (£14) per night, an absolute bargain.

The worries and the reality

You are staying in someone else’s home, one without running water and possibly without electricity too – our places did have one electrical socket each but who needed electricity?
You will be eating food prepared by them in what looks initially to be unhygenic surroundings – we couldn’t have been more wrong about hygenic, they kept their homes as immaculate as possible, the food couldn’t have been fresher, nor the plates/trays shinier.
You’ve got used to hotels with tiled or marble floors, here’s it’s earth – so your feet got a little dusty, then you washed them, simple.
There’s no shower, just a bucket of cold water – there were wet-style rooms specifically for your bucket bath and how environmentally friendly it felt to do it that way.
There’s no flushing toilet, it’s a composting Indian style toilet – Jane’s place did have a flushing WC, but what a waste of water it seemed in the end.
How will we communicate? We don’t speak Hindi, they speak only a couple of words of English – it’s funny how easy it is to adapt and we had a brilliant time without speaking, just playing and laughing all the time.

So what was it like?

Here’s a video featuring one of the homestays run by our host Malti. The room you see is the only room they have for the family, to live in, to eat in, to sleep in. It’s rather humbling to see how happy they are. Our host Malti is cooking us a wonderful breakfast of pakoras and bananas.

Amy’s diabetes management

One area of concern for us was just how we would manage Amy’s diabetes in a place without the hygiene standards we’ve become used to.
Would Amy eat anything?
What it be so awful Amy’s stress levels played havoc with her blood glucose levels?
Could we keep the insulin cool enough?
The simple answer is that managing the diabetes was no more trouble than an easy few days in England.
This was probably one of Amy’s most rewarding experiences and she instantly became part of the community as soon as we arrived, playing games she didn’t understand with village boys she’d never met and couldn’t talk to.
Amy didn’t eat loads of food in the homestay but we made up for that buy letting her have a bigger lunch whilst out sightseeing. Her levels were good, probably partially as a result of being so happy.

A luxury experience in budget surroundings

On the whole the experience was fantastic, I really couldn’t have hoped for more. Seeing how happy the villagers were with next to nothing, compared to us westerners who have everything yet are often not happy with it. We all had such fun with the villagers and Amy’s diabetes management went very well.

Here’s a short video of the lane outside one of the homestays with Amy playing with the kids and later playing ‘teacher’ with them.

A couple of anecdotes

Frog for dinner madame?

Dinner on the second night was at Jane’s homestay and we sat outside whilst the host, Kusum, cooked us dinner over the wood fired stove. We sat on the floor and were handed our meals and watched the lightning in the distance fork in the sky.
Emilia’s plate was hot, she put it on the floor, taking a piece of roti and dipping it in the food.
They I saw it, the small frog. It jumped on her plate just as she was about to take another piece of roti.
“Emilia, wow, did you see that lightning” gave me just enough time to remote the frog from her plate and she was none the wiser.

Don’t scream in the shower

The wet-room where Emilia and I had to shower was just outside of our room, which was hot inside. I went outside to do a little blogging on my netbook whilst Emilia prepared herself for her first ever bucket bath, with cold water.
Shortly after going into the shower room some neighbourhood kids saw my laptop and came over to stare in awe at the pictures I showed them of England and other places they asked about.
I waited for Emilia’s first scream when the cold water hit and I hoped she had heard the kids outside before she came out.
Luckily she’d heard what was going on and got fully dressed in the shower room and only came out when they’d left.
Unluckily for her the kids stayed with me for about 20 minutes.

Next up – summary of problems

Travel in India with type 1 diabetes – Amy’s first few food days

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 11 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is all about Amy’s first few days.

Honeymoon and counting carbohydrates

Amy had only been diagnosed 7 months before we travelled and was still definitely in her ‘honeymoon’ period. Just for the record that word ‘honeymoon’ should not be used for type 1 diabetes, it’s not fun like the real thing, although in a similar vein it can feel like your life has been <insert-your-favourite-past-tense-procreation-word-here>.
At this stage we were not carbohydrate counting and her insulin doses were based around a rough estimate of the size of the meal and whether it was heavy or light on the carbohydrates. Our carbohydrate counting training was scheduled for a month after we returned, but how I wish we’d known about it beforehand.

Breakfast is for wimps

I mentioned in the paragraph ‘A word about flight times’ (flying, medical letters & adjusting basal) that we took a day time flight to India, landing just before midnight (Indian time, 7pm BST, 6pm GMT), how well that worked and that our body clocks didn’t adjust for days. For this reason meal times were all over the place in the first three days and we were generally never awake early enough to have breakfast until day four.

A madly active first few days, no time for hypos

We only had three days in Delhi and we had a lot to do: food at Karim’s (video); a meal as honourary Food Enthusiasts of Delhi; Sunday lunch with my friend Madhu; Sunday dinner with my friend Gautam and his family.
Food times were all over the place, but we’d eaten so much that Amy didn’t have many hypos as the insulin we gave her was probably lower than it should have been.

Day 4: “I don’t like Indian food anymore”

These weren’t the words we wanted to hear but that’s what Amy declared on day 4.
Both kids have always been excellent at eating Indian food, from the moment we introduced “International Food Sunday” to replace the typical roast, although we never got much past “this week let’s try Indian” as they liked it, so many Sundays afterwards featured a Sunday Curry.
Amy had been fine eating Indian food virtually every day during the 3.5 week trip in 2009 bar the odd pasta day. But within 4 days it was all over. We’ve got a problem.

Injecting in not-so-posh restaurants

As a family we rarely eat out so haven’t faced any problems with injecting within the restaurant or having to take Amy somewhere away from the tables, so India brought us a new experience. How would it go we wondered, would she be self conscious, would it put her off if people stared?
For the first few days we’d only eaten a couple of times in restaurants and they had been relatively medium-budget places with nice dividers between the tables, or lovely washrooms. We hadn’t yet tried doing injections somewhere crowded, or just a room full of tables.
On day 4 we had gone to Amritsar to celebrate Jane and my wedding anniversary and I was determined to go to a really out of the way, almost locals only, restaurant named Kesar da Dhaba.
Kesar da Dhaba looks like a UK cafe with its plain uncovered wooden tables, its metal beakers and thali trays for food. There’s no knives or forks here given out by default, you need to request them. We requested 3 lots, I decided to go local.
Amy didn’t eat much, it was a bit too authentic for her liking but she wasn’t daunted by anything, bravely trying the different dishes but only really eating the Shahi Paneer and Aloo Gobi and multiple roti/naans.
When it came to do the injection everything went very well, doing it at the table without anyone really caring at all. We’d forgotten that India until recently was the diabetes capital of the World – now second to China – so everyone had seen it all before.
I believe going somewhere like Kesar da Dhaba really helped us realise that in general there would be no problems coping with injections during our trip.

Hypo, hypo, hypo and forgetting advice

Amy started having a few hypos over the new few days and it took us a few meals to realise why: we were giving pre-meal injections based on what she thought she’d eat but often she ended up only eating part of it, due to her new found dislike of Indian food.
We’d forgotten the advice that injecting after the meal was probably a better idea as when eating Indian food at home Amy had eaten everything put in front of her.
It didn’t take long to remember the advice and changing to post-meal injections seemed to settle the hypos somewhat.

Discovering the food issues

We tried to work out why Amy had suddenly formed a dislike of Indian food as this was likely to make the rest of the trip quite tricky.
A few months prior to the trip Emilia had decided to go vegetarian, something I applauded after doing it myself for a few years. I was also wary of eating meat after wondering whether it may have been the cause of my 2009 downfall.
Due to these two facts we’d so far predominately eaten vegetarian and specifically our dish of choice had been the sublime Shahi Paneer, unless of course you’ve just decided you dislike Paneer. That was it, she hated paneer, but didn’t really know this herself until she’d eaten it over several consecutive days, something that never happened at home when we had paneer.
It was really worth spending the time trying to discover where the problem lie as it made the rest of the trip easier.

Next up – The homestay adventure

Travel in India with type 1 diabetes – food glorious food

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 10 in the series about that trip and its planning and how type 1 diabetes played a part.
This post isn’t really related to diabetes per se but hopefully contains a tip or two for you.

India – a food lover’s paradise

One of the great things about going to India on holiday surely has to be the food. Everyday you get to eat a different variety of Britain’s National Dish, although ironically you won’t find Chicken Tikka Masala anywhere in India apart from 100% foreigner focused hotels. As a note I’d suggest that if you ever come across a restaurant selling Chicken Tikka Masala run a mile and look for somewhere a little more authentic.

Once bitten, twice shy

If you’ve read my blog from our first trip with the kids in 2009 you’ll know that I was a very poorly chap (That’s The Last Time I Joke About Dysentry!). Going back in 2011 I was naturally quite worried of what lay ahead and even more worried that rather than get hit myself with Delhi Belly that Amy might get poorly, resulting in high blood-glucose levels, ketones and worse DKA (diabetic ketoacidosis).

Delhi Belly is avoidable

Many people will avoid going to India after hearing a horror story from their long-lost-Uncle’s-best-friend’s-cousin – i.e. someone they’ve never met – and how that person got really ill. Well, I could give you stories like that from people that have stayed in the UK too.
‘Delhi Belly’ is avoidable if you eat wisely and trust your instincts so don’t think that any trip to India will end up with you getting very ill.
Listed below are a few of the things I live by when abroad but do bear in mind there’s no scientific facts behind any of it, it’s just my opinion.

Simple rules to stay healthy

It’s not the food that makes you unwell

In my experience it’s not the food which makes you – read me – ill, it’s the way it’s cooked, or actually the way it’s prepared.
I’ve eaten all manner of things during my travels – Brain Curry being the oddest – and never suffered when I’ve known the food has been cooked from fresh.

Trust your gut reaction

I can pinpoint my 2009 illness to the hotel we stayed at in Jaipur. When I took one look at the restaurant I decided I didn’t like the look of it but laziness got the better of me so that’s where we ate that night. The food tasted so good, I ate so much and although felt poorly the next day we still returned to the same restaurant the next night. I knew that place didn’t “feel” good and from here on in I will always trust my initial thoughts about a restaurant. (see the last rule too.)

If it’s still sizzling it’ll probably be okay

After 90% of my wedding party were poorly in Thailand back in 1994 I’ve always lived by the simple food rule that in foreign climes I’ll only eat something that’s pretty much still boiling/sizzling. This has served me well throughout Turkey, Thailand, India and Nepal, whilst seeing those ‘I’ll-just-eat-this-salad-because-I-recognise-the-food’ types getting very ill instead… see the next rule.

Don’t eat it if it’s cold and washed in water

My wedding guests and I all got ill after eating during a buffet cruise down the Chao Phraya river in Bangkok. We were very, very ill and after working out who ate what we realised it was the rice dish. Since then I’ve pretty much avoided rice whilst abroad, but I shouldn’t have, not if it had just been cooked and was hot…see the next rule. People I met in Turkey were eating salad because they recognised it and didn’t recognise all that ‘foreign rubbish’ – I know, I know, why go abroad!? – but their salad was cold and washed in water not up to UK standard, so these people just got worse and worse each day. If they stuck to eating a nice flame-grilled shish kebab as we did they would have (probably) been fine.

Don’t avoid the rice

I’ve avoid rice for so long whilst abroad but all for the wrong reason: what made us ill in 1994 wasn’t the rice, it was the fact that it had been cooked, cooled naturally and reheated a little, all in humid climate and on board a probably not-so-clean boat. In 2009 after being so ill the only thing I could eat afterwards for days was plain boiled rice. How ironic that the thing I’d avoided for so long made me well again.

The look of a restaurant isn’t everything

Whilst taking a 5 hour drive in India we pulled up at a Dhaba – Indian roadside cafe – which basically has a roof but no (or not many) walls. There was an air-conditioned restaurant next door but wanting to get the full Indian experience we entered the Dhaba. We chose a table at the back and when pulling the chair out the World’s fly-population evacuated and my heart dropped for a second. I’m not the sort of person to be put off by a fly, or two, or a thousand.
“Right, we’ll still eat here but only choose something deep-friend”.
We ordered a couple of plates of pakoras (deep fried mixed vegetables) and some finger-chips (or French Fries to you and me). We could see into the kitchen from where we sat and I could see that it was all being freshly prepared for us.
It worked, our pakoras tasted great, no-one even had a hint of being unwell and we’ve used the “deep-fried” maxim occasionally ever since.

Next up – Amy’s first few food days

Travel in India with type 1 diabetes – insulin availability and pricing

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 9 in the series about that trip and its planning and how type 1 diabetes played a part.

This post is not borne from experience but from information some of my good friends in India have provided me, following questions asked via the #DOC (Twitter diabetes online community). I’d like to thank my friends Gautam, Madhu and Yogesh for their help in getting me the information for this article.

NOTE: If you’re interested in diabetes supplies other than insulin take a look at this post: buying diabetes supplies in India

Insulin availability

A quick straw poll of some UK Twitter users gave me a list of the most frequently used fast and slow acting insulins: (all sources courtesy of my friend Gautam.)
Fast-acting – Novarapid – is available, including flex pens. source
Fast-acting – Humalog – is available. source
Slow-acting – Lantus – is available. source
Slow-acting – Levemir – flex-pens are available, can’t confirm about cartridges. source

IMPORTANT UPDATE: Since posting this article last night my friend Gretchen, who is insulin dependant and travelling in India at the moment, has said that she could not find Humalog anywhere in Puri or Kolkata (Calcutta), even though getting it in those places is not meant to be a problem. Bear in mind that whilst Puri is tiny and only has a population of 200,000, Kolkata is a major city with a population of 5 million. Both are on the west coast so perhaps Humalog is not readily available there?

Insulin – example pricing

Using the sources listed under ‘Insulin availability’ above as of now – 6th January 2013 – the following prices apply. The rates are very good at the moment, I’ve seen rates 25% lower.
The current rate of exchange rates for Indian Rupees (Rs) are: £1 = Rs88, 1 Euro = Rs72, US$1 = Rs55 (source)

Speed Name Type Rupees £ Euro US$
Fast Novorapid 1 x 3ml Flexpen 555 6.31 7.71 10.09
Fast Novorapid 5 x 3ml pen cartridges 2211 25.13 30.71 40.20
Fast Novorapid 1 x 10ml vial – for pump 1450 16.48 20.14 26.36
Fast Humalog 1 x 3ml pen cartridge 408 4.64 5.67 7.42
Fast Humalog 5 x 3ml pen cartridge 2040 23.18 28.33 37.09
Fast Humalog 1 x 10ml vial – for pump* 410* 4.66 5.69 7.45
Slow Lantus (Optiset) 1 x 3ml pen cartridge 763 8.67 10.60 13.87
Slow Levemir 1 x 3ml Flexpen 988 11.23 13.72 17.96

* surely this can’t be the correct price but it’s the only one I could find; it’s more likely to be similar to the Novorapid 10ml vial of Rs1450 (£16.48, 20.14 Euro, US$26.36)

Next up – food glorious food

Travel in India with type 1 diabetes – buying diabetes supplies in India

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 8 in the series about that trip and its planning and how type 1 diabetes played a part.

This post is not borne from experience but from information some of my good friends in India have provided me, following questions asked via the #DOC (Twitter diabetes online community). I’d like to thank my friends Gautam, Madhu and Yogesh for their help in getting me the information for this article.
 

Do I take everything or just enough?

The answer to this will always come down to personal preference and the length of travel time. Personally, I’d rather always take enough – in fact, more than enough – supplies for the whole journey as I don’t want to spend time looking for supplies instead of enjoying the holiday. If we got the chance to travel for many months obviously things would be different.

Quick note for people from the UK: we’re very lucky in the UK to get virtually everything for free* from our superb National Health Service, so it may not be immediately apparent that many countries’ residents do not. So you will have to pay for anything you run out of, or replace after loss.
 

Can I get what I need in India?

Probably; almost certainly if you’re on multiple daily injections, as opposed to a pump. It is possible to buy supplies either off-the-shelf or via prescription from these leading brands: Novo-Nordisk, Eli Lilly, Accu-chek, BD (needles/swabs), Johnson & Johnson, Abbott, Freestyle, Bayer and Sanofi. Although these companies sell certain products please don’t rely on them selling everything you currently use. See the HealthKart links further down this post to view information about what may be available.
 

Buying without a prescription

India does have a Doctor prescription system but many things that are only available under prescription in the UK (for example) can be purchased off-the-shelf without the need for a prescription. Other things that should require a prescription can sometimes be bought without a prescription just by talking to a pharmacist who’s willing to sell it, but of course I’d not recommend trying to break the rules. 😮
It seems most things other than insulin and insulin-pens can be bought without prescription.
My friend Yogesh from Delhi told me “Most of the chemists will give you medicine without a prescription, heck half of them act as doctors as well and plenty of people just ask them what medicine to take for ailment, rather than going to the doctor.”.
 

Getting a prescription

My friend Madhu from Hyderabad sums it up well: “Not hard to get doctors prescription or medicine here in India. One way to do it is to get a letter from your GP saying what medicines one takes and more than anything to know what is the composition of the medicines. Any reputable doctor here would do a quick check and give a local prescription. Any mid size hotel here has a doctor who is their house doctor. If not one can go to the major chain hospitals like Apollo which are reputable”.
 

HealthKart.com and some example pricing

Take a look at HealthKart.com to see what types of things are available online, which should give a rough indication what is available offline too. Often online purchases in India are more expensive than in real shops and although HealthKart breaks this rule it’s not much use if you haven’t got a permanent address in India. So this is just for info only: http://www.healthkart.com/diabetes
(meters, test strips, needles and syringes).

* obviously it’s not ‘free’ as I pay my taxes to fund it but you know what I mean.

Next up – insulin availability and pricing

Travel in India with type 1 diabetes – flying, medical letters & adjusting basal

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 7 in the series about that trip and its planning and how type 1 diabetes played a part.
This post is predominantly geared towards people with type 1 diabetes, rather than general travel advice. For info, at the time Amy was taking 7 units of slow-acting Levemir each night at 8:30pm and the follow doses of fast-acting Novorapid for each meal: 10, 7, 6 which were adjusted depending whether she was high, or low.

Getting anxious about flying

Whilst Jane was generally nervous about the travelling/diabetes combination I had done so much planning I was getting blazé about the difficulties we might face on the trip. One thing we did worry about together was the whole airport/flying/injecting thing.

A letter of consent

With all the recent changes in airport/airplane security we were nervous about how to transport Amy’s insulin and needles: putting it in the rucksack in the hold could result in lost luggage and insulin; carrying it on board gave us worries about needles and liquid and security regulations.
When she was diagnosed we were given some travel literature and it advised that we should request a letter from the hospital which stated Amy’s condition and her medication requirements, this in turn would be shown to the security desk at the airport and we would be allowed to carry the insulin/needles on-board.
Way before we were due to fly Jane got the letter and we were all set, albeit still slightly nervous.

A word about flight times

In 2009 we took an overnight flight to India leaving at 10pm and arriving at midday (Indian time), a flight that didn’t go well as we got hardly any sleep on the plane. We thought an overnight flight would be better as we wouldn’t waste a whole day flying but instead we wasted a whole day – after arrival – sleeping. However after the first night our body clocks were adjusted to the local time. Amy didn’t have diabetes back in 2009.
This time we decided to try a day time flight, leaving at 10am and arriving before midnight (Indian time, about 7pm our time). This seemed to work out much better as we didn’t need to worry about sleeping and just had fun on the plane watching films and eating. However it tooks days for our body clocks to sort themselves out.

Calculating the correct basal (slow acting insulin) dose

Amy normally takes her basal insulin – Levemir – at 8:30pm, so the night before we flew we had to adjust her dose.
During August India is 4.5 hours ahead of England which meant that Amy’s first injection in India would be at 4pm as far as her body clock was concerned.
Therefore we adjusted the Levemir dose using the following calculation, bearing in mind that Amy was on 7 units Levemir and the difference between 8:30pm and 4pm is 19.5 hours.
Normal basal units divided by 24 hours, multiplied by number of hours between doses.
= 7 divided by 24 multiplied by 19.5 hours
= 0.29 multiplied by 19.5 hours
= 5.6875 units.
We decided to give 6 units and delay her first injection in India by 30 minutes, giving it 9pm, which would fit in better with holiday time.

At the airport

We always make sure we arrive at the airport in plenty of time and arrived four hours before our flight on purpose, giving Amy time to eat a decent breakfast before we even checked in. It was funny seeing her sat on our baggage eating Weetabix out of a plastic container we’d taken.
At the check-in we made sure they knew she was diabetic, even though it was noted when the flights were booked. The check-in person made us feel quite at ease and told us just to show the letter to security and we’d be let through without issue.
Jane went first holding the letter in one hand and the packaged diabetic kit in the other, showed the letter to the security person who guided us through to the family aisle and within seconds we were through.
No fuss. No checking. We felt silly for being so worried beforehand.

Breakfast number two

Whilst in the departure lounge it was time for the rest of us to have breakfast and in true form Amy decided she wasn’t just going to sit there and watch us eat. So it was time for another bolus for her. At the time she was on a fixed bolus (fast-acting) insulin dose per meal, which was adjusted if she was really high or really low. We weren’t carbohydrate-counting at the time and looking back I can’t imagine how we coped with semi-fixed doses.

Meals and injecting whilst flying

Before we were served our first meal Jane spoke to the cabin crew and asked it was possible for them to let us know 20 minutes beforehand so we could sort out Amy’s injection. This was no problem for them, they’re obviously quite used to it.
Although we were sitting together in a row of four Amy didn’t want to do her injection in the cabin so Jane and her went to one of the tiny loos, getting a few strange looks when going in together. It was a little cramped. Amy was worried about movements due to turbulence but it worked out fine.
We hadn’t specified a special meal for Amy but the dessert was a full-on sugar one. Without us saying anything the cabin crew apologised and went and got Amy a piece of fruit.
Amy did go slightly low (3.6mmol) on the plane but generally her numbers on travelling day weren’t too bad: 7.0, 5.3, 9.8, 3.6, 9.7. We’d expected it to be a lot worse.
There were no other problems on the flight and the cabin crew were wonderful.

Next up – buying diabetes supplies in India

Travel in India with type 1 diabetes – cooling insulin with Frio wallets

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 6 in the series about that trip and its planning and how type 1 diabetes played a part.

The first part of it has been reproduced from the Monsoon Meandering blog article I wrote.

From my original article…

Some gadgets are purchased purely out of desire, others are desirable but serve a purpose and others are bought simply because a problem needs to be resolved. Yesterday’s purchase of Frio wallets was definitely made to solve a problem, but I like the geekiness value it has.

So what is a Frio wallet?

A Frio wallet is a small wallet with an special inner wallet which contains crystals that by using evaporative cooling will keep insulin at the correct temperature once they’ve been activated.

How do you use it?

It’s so simple: just immerse it in cold water for up to 12 minutes (first time use, depending on the wallet size you’ve purchased) and wait until the crystals have turned into a gel, at which point they swell considerably. Every two days or so you’ll need to repeat the process and you can keep doing that for up to 28 days. After 28 days of solid use just let the wallet dry out and then it’ll be ready for your next trip.
After activation the inner wallet is dried and then placed in a special outer wallet which stays dry, so can be placed in your bag, suitcase or pocket as required.

How much do they cost?

Yesterday we purchased a Large Wallet and an Extra Large Wallet for £15.50 and £19.00 respectively. We only bought two as we wish to separate the insulin / pens just in case a bag gets lost or stolen. So, £34.40 for a lot of peace of mind, that’s a small price to pay.
We bought ours from Nomad Travel Shop in Southampton who had loads in stock but people in the UK can also buy them direct from Frio UK.

Post trip analsyis

Do they work?

Yes, they do.
We found that one of our wallets worked better than the other but both dropped the temperature to stay within the safe range for insulin.
We found that they worked less well in the hotels that had air-conditioning which is not surprising as they work by evaporation. Luckily those hotels also had a fridge which we used in preference whilst in the room.
As we went in monsoon season I wonder whether the Frio wallets would be even more effective during a dry season as evaporation will occur more easily.

Which size was best

Once the water has expanded the gel walls of the wallets the space inside decreases immensely and things can be difficult to fit inside. For that reason I wish we’d bought two extra large wallets.
But we fitted a lot into each one: two Novo pens, two spare Novorapid (bolus) insulin and one glucagon kit.

Next up: flying, medical letters and adjusting basal

Travel in India with type 1 diabetes – the diabetes travel kit

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 5 in the series about that trip and its planning and how type 1 diabetes played a part.
The first part of it has been reproduced from the Monsoon Meandering blog article I wrote.

From my original article…

Most of the planning and preparation for this trip has been going really well but we still had one area of concern: the diabetes medical kit. Today we decided to sort that one out so we could relax a little more.

As a little background, after the last trip where we used very, very little of what we actually took we vowed that any medical kit for future trips would be small, very small. For our main medical kit this maxim will still ring true and it’s a good job because we’re taking rather a lot of medical stuff for Amy’s diabetes management.

So here it all is. Well actually it’s not all there, we’re taking double of everything you see in the picture, split across two different bags just in case one gets lost or stolen. This may seem a little over the top but there’s no way I’m risking losing a bag and being in the middle of nowhere for a few days with no Insulin immediately to hand.

Roughly in a top to bottom, left to right list here it all is: Accu-check control solution, Ketostix, Accu-check sterile lancets, Novo-pen 4mm needles, Accu-check testing strips, Novo-rapid insulin spares, Novo-rapid pen including cartridge, Levemir pen including cartridge, Glucogel, Glucagon, Accu-check blood glucose testing kit, Detro tablets, spare battery for Accu-check meter

Each bag’s worth of supplies can be broken down like this

To keep any medical supplies cold
– 1 x extra large Frio wallet

For blood/glucose level checking
– 1 x meter with multi-clix lancing device
– 34 x multiclix units, each containing 6 lancets
– 150 x Accu-check testing strips
– 1 x Accu-check control solution to test the meter if required

For the injections
– 1 x Novo-pen for Novo-rapid insulin, kept in a Frio wallet
– 1 x Novo-pen for Levemir insulin, kept in a Frio wallet
– 100 x Novo-pen 4mm needles
– 2 x spare Novo-rapid insulin cartridges, kept in a Frio wallet

For treating hypos (hypoglycaemic attacks)
– 2 x Dextro Energy packs – these are easily available in India under brand names like Glucoburst
we’ll also have other foods to hand at all times
– 1 x Glucogel, for treatment of a bad hypo*.
– 1 x Glucagon, for treatment of an extremely bad hypo*, to be kept in a Frio wallet
* luckily we’ve not yet had to use any of this

For anything else
– 25 x Ketostix, for testing for Ketosis
 

Post trip analysis of the kit

What we wouldn’t take next time Nothing! We didn’t need to use the Ketostix, the Glucogel or the Glucagon (thank God!) but you can’t leave these at home.
What would we take more of? Dextro tablets. According to my research prior to the trip dextrose tablets are available in India but we looked in Delhi, Aurangabad and Hyderabad and didn’t find any; we asked at pharmacies and couldn’t find any. We ran out – see next ‘Running out of dextrose tablets’.
 

The almost serious bag loss

Having packed everything in two bags we felt safe and confident that we’d never be without the necessary supplies, even if we lost a bag. That was until we lost them, BOTH.
At the hotel in Orchha we put all of our rucksacks – bigs ones first – into the autorickshaw. Jane and I climbed in first and rested the diabetes-supply-filled-daysacks on top of the luggage, just behind our heads. The kids got in and the driver drove away slowly as it was raining and the road was full of potholes and bumps.
He got a call on his mobile and unbelievably (for autorickshawwallahs) stopped.
Then two guys pulled up on their motorbikes, shouting at the driver in Hindi, although they didn’t seem angry.
Then we saw the bags, all dirty and wet. The guys had spotted them fall out, which happened as there was no fixed back to the autorickshaw, just a rain cover. The guys wanted no money and wouldn’t take what I offered. That’s what people in India are like, they’re just happy to help (mostly).
 

Running out of dextrose tablets

In the first couple of weeks Amy had quite a few hypos, caused because she was injecting before she ate and then deciding she didn’t like it so much. At this point we weren’t carb counting and she was taking a regular amount depending on the size of the meal. After a week or so we realised what was happening and started doing the injections afterwards.
We were running out of Dextrose tablets and we looked everywhere we could to find some, when we weren’t sightseeing. It didn’t seem like a big thing as we were going to the bigger cities of Aurangabad and Hyderabad and would surely find supplies there. We didn’t.
In Hyderabad I started getting nervous as we were soon boarding a train to Hampi (station:Hospet) and that place is really out in the middle of nowhere. I didn’t have much hope of finding any in Hampi.
We went to a pharmacy and then another and they could offer us was powder, the type used by bodybuilders, in huge containers. We didn’t buy anything.
It’s worth pointing out that in India there’s so many possible alternatives, so many things are sweets. A good example is Barfi, a sweet mostly made from milk…and sugar. It contains on average 17g of carbohydrate per piece, keeps for ages and is available absolutely everywhere.
At the time though we fixated on the need for dextrose tablets, rather than the bigger picture of needing emergency simple carbs.
I emailed our DSN in Royal Hampshire County Hospital in Winchester and got back a reply almost instantly saying “don’t panic, just get hold of some sugar cubes at a cafe or shop and use 2 cubes for any hypo” (followed by some more complex carbs of course). It was so nice to have someone tell us what to do and break our fixation.
We ran totally out of dextrose at our hotel in Hospet and explained to the waiter who just said “take these cubes, all of them”. We had enough cubes for several hypos and every now and then we did same thing and got a stash of more cubes.
We never did find any dextrose tablets.
UPDATE: My friend Gretchen, an insulin dependent diabetic, is currently on her travels and has found it impossible to find dextrose/glucose tablets too.
 
 
Next up – cooling insulin with Frio wallets

Travel in India with type 1 diabetes – buying travel insurance

In late July 2011, exactly 7 months after Amy was diagnosed with type 1 diabetes, we backpacked around India for four weeks, in a trip we called Monsoon Meandering.

This is post 4 in the series about that trip and its planning and how type 1 diabetes played a part.

Nah, we don’t need travel insurance

I’ve heard of so many people who travel without insurance in the hope that nothing happens to them. To me, that’s just plain craziness, why take the risk for what is such a small amount of money compared to the rest of the trip. If you’ve been to India you’ll know that health and safety doesn’t currently feature very highly and allegedly its roads are a death trap – although I don’t believe this – so please, please get yourself travel insurance.

Surely type 1 diabetes is really going to raise the price

To be fair, you’d expect this to happen a bit wouldn’t you? But going to the USA raises your travel insurance premium drammatically too and that’s no reason not to go to America; no, there’s many other reasons not to go there 🙂 (Sorry USA but I love Asia; I love experiencing different ways of life; I enjoy meeting people I wouldn’t normally meet; that’s all.)

Travel insurance cost from the previous trip

From memory the cost of annual Worldwide* travel insurance from our previous trip to India in 2009 was about £80.
*Worldwide these days doesn’t include USA/Canada which is ironic since all the ‘World Series’ sporting competitions exclude all countries except them.

Getting the first quote

It seemed quite natural to go to Google, type in ‘diabetes travel insurance’, click Go and see which insurers I recognised (as reputable) were listed.
I did this and one of the UK diabetes charities/companies turned up in the list so that seemed a good place to start. Honestly I can’t remember which one but I’m fairly sure it had a red logo and web site and it definitely wasn’t DiabetesUK or JDRF.
I did an online quote and out popped the figure, a rather unsurprising £300. I’d expected an inflated premium so I wasn’t too shocked at this.

Always get a second quote

Knowing that my house insurance provider (MoreThan) gave me a good premium for my house insurance I decided to give them a try. Rather sneakily I thought I’d find out how much the annual worldwide trip premium would be for a family without type 1 diabetes. I called a competitor, One Sure Insurance and it came in at £85, so insurance had gone up about £5 since our trip two years before.
I then adjusted my details to put in the minor ‘forgotten’ detail of Amy having diabetes and waited for the inflated premium to show its face.
£85.
£85!
£85?
Surely that couldn’t be right, I must have made a mistake, so I checked the details again.
£85.
It couldn’t be right so I picked up the telephone and ask them to do me a quote as their web site wasn’t working.
“Certainly sir”…”that works out at…£85”.
“And that definitely includes cover for my daughter’s type 1 diabetes?”
“Yes sir”
“So if she has a diabetes related problem any issues are covered by the travel insurance?”
“Yes sir”
“So if she needs hospital treatment for the condition which existed BEFORE the policy was taken out she’s still covered?”
“Yes sir”.
Wow, sign me up Mr MoreThan, now.
(I know of course that I should have really gone for a third quote but I honestly didn’t think I’d beat it, with a company I trusted.)

So there it is, travel insurance didn’t cost any more for a family with type 1 diabetes then a family without.

Note to self: maybe check the rest of the details next time

So excited was I at getting the premium I didn’t check a key detail – I thought I had but the insurance company said I didn’t – and I wasn’t covered if we missed out flight home from Mumbai to Heathrow.
For most holidays this wouldn’t be too much of a problem as you would be likely to be quite close to your airport of departure, but we weren’t. I didn’t plan to be in Mumbai for long and the train journey to Mumbai was from Goa along the beautiful Konkan railway, a route which suffers from mud sliding on to the track and blocking the route. It mainly suffers during monsoon times, just the time when we were going!
What made it worse was that we loved Goa so much that I changed trains at the last minute which made our window even narrower, arriving at Mumbai at 10pm and departing only 12 hours later.
Luckily no mud slid onto the tracks.

Next up – the diabetes travel kit