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 along with Insurance Revenue marketing tips (which would be useful for people managing the insurance services), 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

Travel in India with type 1 diabetes – getting the visas

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 3 in the series about that trip and its planning and how type 1 diabetes played a part. This post doesn’t actually contain any information about diabetes but if you’re thinking of going to India then getting your visa is an important part.

Caveat: visa rules change quite frequently and what’s below is what happened for us in 2011.

Do I really nead a visa?

Yes, unless you’re from a country neighbouring India you’re probably going to need to organise your visa way in advance. Only certain countries’ residents can get a visa-on-arrival when landing in India.

Don’t peak too soon

The first thing about a visa for India is that it starts the moment it is processed and first timers are likely to just get a 3 month or 6 month visa.
If you’re going on holiday to India in August you might think applying for your visa in April is a good idea, just in case there’s a backlog or problems with your application. If they grant you a 3 month visa it’ll run out before your flight leaves. Even if they grant you a 6 month visa it’ll run out in October which isn’t great if you’re planning a four month stay. So timing is of the essence and the best thing you can do is find out about the current situation by joining the free forum IndiaMike.com, get yourself to the Visa section and in particular this thread.
I found it incredibly naive that the visa centre suggest that you don’t even book your flight until you’ve got your visa, yet the visa starts immediately it’s issued. Due to flight pricing getting higher the nearer the departure it means that virtually everyone will book their flights way before.

Getting photos for the visas

The photos we needed were not the normal size passport photos we’re used to – 45mm x 35mm – but instead were 50mm x 50mm. Local shops will take your photo for you but the cheapest I found at the time were £15 per person. This would have added £60 to the cost of the visas (£50 each) so I dug out my camera, took the photos, edited them using free software from the internet and saved myself probably £59 in the process.
If you go to the visa centre in person before you even get to the waiting room a clerk will check your photos are the correct size. If they’re not you’ll be sent to the nearest (probably expensive) photo booth.

Our application process

We filled in our applications electronically, printed them off and booked an appointment for the following week at the offices in Victoria. Amy’s school had a day off and we used it to have an enjoyable trip to London and sort the visas out too.
I was slightly nervous at the visa office: what if my photos were rubbish, they weren’t; what if I’d filled in all the application forms wrong, I hadn’t; what if; what if; what if.
As always I’d done my homework, stuck to the rules and our applications were fine.
It’s worth noting that normally you won’t get your visa on the day you apply as it is sent from the visa centre to High Commission of India to be rubber-stamped, presuming it’s a straight forward application. Visas are normally sent back by post or can be collected and ours were received in the post within a week, far quicker than I’d expected.

Parents taking their kids need an authorisation letter, from themselves

In yet another ‘only in India’ scenario any parent wanting to get a visa for their kid have to have an authorisation letter for each child, signed by each parent. It sounds odd but it’s in the rules so we did it, thinking all the time that we’d misunderstood them. We hadn’t, we needed those letters.
Whilst in my appointment I overheard an argument between a parent (of Indian origin) and the official. He maintained that as he was of Indian origin the rule didn’t apply to him – it did – and that he would just write a letter now, but he couldn’t as he’d made the trip to London without his wife so she couldn’t sign it. Because he didn’t read/believe the rules his trip to London was wasted.
I managed to contain my smirk at having read the rules properly.

Next up: buying travel insurance

Travel in India with type 1 diabetes – planning the trip

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 2 in the series about that trip and its planning and how type 1 diabetes played a part.
In this article there are several tips for people with diabetes identified by the text ‘tips for diabetics
 

Yet another trip of a lifetime

Our backpacking trip wasn’t a ‘land. chill. where should we go now?’ trip, instead it was a ‘we’ve got four weeks, how do we make the most of that time’ one. This meant it had to be well planned which in turn meant we had a great trip and one that didn’t cause too many problems for Amy’s diabetes management.
 
Whilst planning the trip I had some rules I wanted to follow:

  • Be adventurous, see things normal tourists wouldn’t, but…(see point 2)
  • Make this trip as easy as possible, we’ve had enough pressure on us recently
  • Make sure Amy is never in danger, medically speaking
  • Managing diabetes should not take our holiday time up
  • Don’t let diabetes stop us doing anything we want to do

 

Trains, planes and automobiles

trains: for this trip we used trains for all bar one journey which we did by car.
planes: distances in India are huge and sometimes a plane may be the best option, but honestly you’d miss so much wonderful stuff.
automobiles: for the trip in 2009 we stuck to the north and travelled by car and had a driver/car at our disposal for 10 whole days, being chauffered from place to place. You might think this would be an expensive way to travel but for four of us, petrol, tolls, driver costs/accomodation and our hotels we only paid £850!. If you’re interested in this I’d thoroughly recommend the company we went with Namaste India Tours.
 

The route

So, you’ve seen the route – it’s up there on the right, click the picture for a bigger version – which saw us take 8 trains over 2700 miles during the course of our journey. The route looks a bit like a crazy waste of time but there’s good reason and that’s where rule number 1 comes in. But before that a word about booking trains.
 

A word about trains in India – you need to book

The railways in India are popular, very popular and many trains can be booked up many months – currently 4 – before the date of travel. If you turn up to a station without a ticket it’s highly unlikely you’ll be going anywhere. If you want to know how to research and book trains in India please read this guide way before you travel.
For our trip I researched the whole route way before the earliest date I could book the first train. When the booking day arrived I got up early to make sure I was one of the first to get my seats. This might sound like I’m a bit OCD but on our longest train – an 18 hour overnight journey from Jhansi to Aurangabad – there were only 4 possible berths available and I needed them all. Worse still, there was only one train a day.
 

Rule #1 – the most direct route isn’t always the best route

For any travel in the UK I’d always plan the fastest or most direct route from A to B but this isn’t necessarily always the best idea.
India is a vast country, the distances are huge, trains can run for up to three days from their starting station to their destination station and most trains are ‘sleeper’ trains, having padded benches which convert into beds between 9pm and 6am. To read more about the different types of trains in India take a look at this guide on Seat61.com.
Overnight trains have three massive advantages, one we found especially useful for type 1 diabetics:

  • you don’t have to pay for a hotel too. If you were to catch a long day time train you’d stay one night in a hotel, spend much of the next day on a train doing nothing, arrive and book into a hotel. So that’s two hotel prices and a wasted day.
  • you don’t waste a day doing nothing. Catch an overnight train and you can check out of your hotel just before lunch, leave your luggage there and go sightseeing, eat, come back to the hotel, catch your train, sleep, wake up in a new town
  • tip for diabetics: from a diabetic’s point of view catching an overnight train means you don’t really need to worry about food, its carbohydrate values or injecting on a moving train.

 

Rule #2 – you can’t always arrive and leave when you want

If you’re travelling off the beaten track using some of the minor train lines then you’ll have precious little choice of what time you catch the train as there will possibly only be one train a day. On some of our routes such as Hampi (station:Hospet) to Goa (station:Madgaon) there’s only a few trains a week. We had wanted to stay for only 4 nights in Hampi but due to train connections we were forced to stay for 5, something which turned out very well for us as we loved Hampi.
 

Rule #3 – the fastest train isn’t always the best train

On one of our routes – Aurangabad to Hyderabad – had a train which left at 9pm and got in at 7am, a seemingly brilliant timed train considering what I wrote in Rule #1. A little more research showed that they had a train from 7pm to 9am, a whole four hours longer on the train but it was the better train for us due to two reasons:

  • if you arrive very early you’ll need to wait to check in to a hotel. What’s the point getting the fast train, arriving at the station, transferring to the hotel only to have to wait there for hours for your room to be ready.
  • if your train arrives early you need to be up and ready to get off, otherwise you’ll miss your stop. Indian trains are sometimes (very) late but many aren’t and arrive at the specified time, with the minimum stop time of only 1 minute at some stations. Believe me, waking up at stupid o’clock in the morning realising that your station is next and your luggage is all chained up as the station nears isn’t much fun. Best to give yourself some time to wake up first.

Tip for diabetics: from a diabetes point of view catching the faster train would have proved a better option if our slower train was delayed as we didn’t take any breakfast with us. We could have also eaten dinner at a more normal time (for us) of 7:30pm, rather than having an early dinner. Also, Amy could have done her Levemir (basal) insulin at her normal time of 8:30pm.
 

Rule #4 – avoid the main meals on the sleeper trains

Actually, this is down to personal preference but having taken a look at the food served on sleeper trains I’d do anything I could to avoid having to eat it. I did eat some mutton dish but it was inedible, very fat and generally not very nice. So my suggestion is as before, try and catch an overnight train which leaves at 9pm or 10pm and eat a proper meal before hand. On a long day time train – Goa to Mumbai – we even took sandwich style food with us; okay I’ll admit it, we took a footlong Subway each, that was dinner but much more preferable to eating a train main meal.
 

Rule #5 – DON’T avoid the main meals on the Shatabdi trains

The Shatabdi trains are completely different to the normal sleeper trains, they have airplane style seats and waiters/hosts who serve you food, all on a lovely tray. If you go for the top class your soup will be served in a china dish. The food was lovely, not full of fat or rubbish meat.
 

Rule #6 – For road travel always carry some food with you.

Tip for diabetics: on most of India’s roads there are cafes known as Dhabas which serve tasty snacks like samosas, pakoras and full meals too, but they aren’t everywhere and we got caught out when expecting to find one to eat lunch in. We had to keep going until 2pm until we managed to find a small shop, which only sold crisps and chocolate and high-sugar drinks. Amy’s blood glucose levels were all over the place for the next 24 hours. It’s an obvious tip really but we didn’t realise how long it would take to reach our destination.

Next up: getting the visas

Travel in India with type 1 diabetes – introduction

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

 

A bit of background

Jane and I have always travelled, it brought us together, we married abroad, but it all stopped when we had kids. It took some time to decide to travel again and with many nerves we took Emilia and Amy to Rajasthan in 2009, in a trip we named Big Cats and Holy Ghats, they were 11 and 8 at the time. Two years later we decided on a much more adventurous trip which would mainly focus on Ladakh, an area sandwiched between the Himalayas, Pakistan, China and Tibet. We broke the news about the trip in October 2010 during a meal in our favourite Nepalese restaurant in Winchester, the Gurkha Chef.

A change of plan

I’d almost booked the flight tickets, just before Christmas 2010, but a few days later Amy was diagnosed with type 1 diabetes and our world briefly fell apart. Any thoughts of going to India at all were discarded. Within 24 hours of diagnosis one of Amy’s first questions to the diabetes nurse was “does this mean I can’t go to India anymore?” and after hearing this I was determined to go to India, as long as it was safe. It should be they said.

Diabetes forces a change of route

Diabetes didn’t actually force the change of route but I was unwilling to travel to Ladakh anymore. The road across the Himalayas goes over 5000m three times and travellers run the risk of getting Acute Mountain Sickness (AMS), especially if you have to stop for any length of time. To avoid this some recommend drinking sugary drinks, something that doesn’t sit well with diabetes. This is compounded with the similarities between a hypoglycaemic attack and the symptoms of AMS such as confusion and dizziness. None of this means a diabetic can’t go to Ladakh or other high altitudes but there was no way I would put Amy, or us, through that so soon after diagnosis. We needed a new route and opted for Delhi to Mumbai – via Amritsar, which anyone who knows the area will tell is a bit of a long way round. We decided to do virtually all the travel using trains, all booked by ourselves, without a Travel Agent in sight, it seemed quite daunting.

A little research is required

We knew no-one with type 1 and we knew no-one who’d been to India with type 1, so I turned to my favourite India forum – IndiaMike – and asked some advice. They told me straight:

  • India is one of the top 2 diabetes countries in the World
  • Amy’s medication Novorapid and Levemir was available
  • food could be challenging but could be handled.
  • India has some of the world’s best Doctors.

And so it began, a frantic few months of deciding the route, researching what diabetes specific things we need to plan for and take, oh yeah, and coping with the daily difficulties of a newly diagnosed diabetic.

 

Next up: planning the trip.

World Diabetes Day 2012

Today marked the first time where any members of our family actually did anything connected with World Diabetes Day. Last year should have been the first but we didn’t know about it, only Twitter made sure we knew about this one.

NOTE: World Diabetes Day 2013 blog and photos are here

I set off at 7:30am to drive to the Queen Alexandra Hospital on the top of Portsmouth which marked the start point of the DiabetesPower ride from Portsmouth to Birmingham, a mere 150 or so miles over two days! I arrived dead on 8am, thirty minutes before Angela (@diabetespower1) and her team of cyclists were due to leave, but where were they? I couldn’t find them. After walking around the QA I eventually found them.

Angela and I found a few minutes to have a nice chat – we’d never met before – before the hospital’s communication team and the local newspaper turned up for a photo session. It was great to meet them all and hear about DiabetesPower, but I didn’t envy them, especially knowing the route they were taking had some pretty big hills.

Here’s a shot of the team getting their photo taken.

My route to work took me past the team tacking the first few hundred yards, up the steep Portsdown Hill to the north of Portsmouth. I stopped at the top to cheer them on. Here’s a picture of Angela nearing the top, with Portsmouth and its Spinnaker Tower in the background.

Angela aka DiabetesPower

During lunch time at work I followed all the tweets that were going on and was amazed to find out about Ninjabetic’s article for The Independant about Diabetes UK’s 4T’s initiative. What a great idea that is and so simple to remember: tiredness, thirst, thin and toilet. Tomorrow I’ll print out their poster and get some put up in the local schools and nurseries.

Back home and catching up on all the lovely messages about the release today of this Circles of Blue web site. Amy’s been amazed by all the messages particularly directed at her article about the day she was diagnosed. It had so many retweets on Twitter too, topped off by a retweet by Ninjabetic’s doc, the award winning Partha Kar @parthaskar – he’s almost a celebrity 🙂

After dinner and we decided to pop out to see the buildings being lit up for WDD2012. First to our nearby Southampton where we found the building that was meant to be lit up, and it was, but it was white. What! That’s Rubbish.  So, off to Portsmouth to view the Spinnaker Tower which was glowing blue for all to see.

A twist of irony saw me ending the day supporting Portsmouth rather than Southampton, but only the council, not the football team. No way would that happen.

Coming home from hospital

30th December 2010

Whilst the care we received from the staff in the Northbrook ward of Winchester’s Royal Hampshire County Hospital was nothing short of excellent there’s something about being in hospital that just makes you want to get out, quickly. At the same time you want to stay in for the security it gives you, knowing that if there’s a single small problem you can speak to a nurse and the appropriate care will be given. At home you’ve got similar options as you can phone the ward to get advice but most of us want to stand on our own feet and be able to cope ourselves. Most people hesitate until they need to call, meaning the problem has got (far) worse before you seek advice.

There were many factors that made us want to go home and for the nurses to find it easy to agree:

On top of the list above, good friends of ours were due to come for a Christmas get together and Amy really wanted to see them. We’d spoken about postponing the evening until later but Amy was having none of it, already displaying that she wasn’t going to let diabetes rule her life and stop her from doing anything.

We decided to leave hospital after Amy had had her early evening meal and had successfully done her injection. The nurse was there to watch her do her injection, it felt like a test, which if failed would mean Amy spending another night in hospital. She didn’t want that, we didn’t want that. Up to that point all of Amy’s injections had gone well; it was almost obvious what would happen next.

Amy chose her leg as the site and prepared herself. We watched, her sister watched, the nurse watched, Amy hesitated and hesitated. In my mind I’d decided that we’d be staying another night in hospital. Then Amy did it. I glanced at the nurse who was congratulating Amy. In my mind I decided that we’d be going home tonight. The meal was eaten and we prepared to leave.

Our friends arrived at home moments after us. We shared hugs without smiles and without tears, whilst sharing glances which conveyed words which didn’t need speaking. We were all glad it was them there at that time. Sitting around drinking and chatting and the world seemed a normal place again except for one thing, I wasn’t drinking. Well I couldn’t; what if I needed to drive Amy to hospital quickly?

The time came for Amy to do her first injection at home, it was her night time basal of Levemir. Jane and Amy went upstairs to do it in private at about 8pm. At points I went upstairs to try and assist, one of our friends did the same, but Amy wanted to do this herself. All different methods of assisting were tried but nothing worked and she wouldn’t let anyone else do it either.

Finally they came downstairs at 10pm. The first injection at home had taken two hours.

To read more check out Jane’s article on how the first injection at home went in the next post.

The smallest conversation can mean so much

30th December 2010

In the children’s ward at Winchester hospital there’s a room where parents can go if you need a little time out, without children. Equipped with kettles, fridges and toasters, a sofa and some chairs it offers a place to go and calm, or to scream if that’s what you need.

Jane and I went in there to have a cup of tea – tea of course cures all problems momentarily – and to chat about what had happened during the last 24 hours and specifically because the recent Glucagon training session had scared us somewhat. We’d also been told a little about Diabetic ketoacidosis (DKA) and it was all becoming a little too much.

After a few minutes another couple came in to and heard us talking about diabetes. They asked us about what had happened and how we were.

Then they told us a couple of things which, for me at least, helped an awful lot.

Their daughter had type 1 diabetes and was diagnosed many years before. They praised the staff at Winchester and said how good it was that they could if necessary go direct to the diabetes team for anything that was even remotely connected to diabetes. This meant no worry about getting the GP at the local surgery who knew diabetes inside out, or having to explain our situation again and again. This helped a lot.

Some thoughts crossed my mind: why were they here?; what was wrong with their daughter?; just how often do they find themselves back in hospital with her?

Somehow I managed to get the answer to all these questions without even asking as they sought to calm the worries they could clearly see written all over our faces.

“This is the first time our daughter has been back in hospital since being diagnosed, she’s just having a fever and we’ve found it difficult getting her blood glucose levels down. We called the hospital and they said ‘don’t worry, just bring her in and we’ll check her.’.”.

They probably never knew how much their words reassured us.

 

Does this mean I can’t go to India anymore?

One of the things they did as soon as Amy was diagnosed was to give her a pen and a pad, so that she could write down any question that popped into her head. In the next 24 hours many questions were written down but there was one that surprised me, pleased and relieved a personal doubt I’d given myself.

“Does this mean I can’t go to India anymore?”

We’d been planning a trip to India, our second family trip there and it was going to be a big one: one month away and visiting the roof of the world, the Himalayas and the regions near by. The centre point would be Ladakh and a two day coach trip through the Himalayas from Manali to Leh. I’d been planning this for months, reading for hours a day and I was just about to buy the flight tickets.

As soon as Amy was diagnosed and when I had a few minutes to myself I thought about the trip and one thing made me decide we wouldn’t go, we shouldn’t go, we couldn’t go. The trip to Leh in Ladakh goes over mountain passes as high as 5300m and at such heights Acute Mountain Sickness (AMS) can be a real problem which can prove fatal if not treated quickly.

Dr Google told me one of the preventative treatments is to drink sugary drinks.
Sugary drinks + diabetes + risk of AMS = no way am I doing that.
(It turns out Dr Google was once again wrong but I only found this out many months later.)

When Amy read out the questions she’d written down I couldn’t believe that with everything currently going on she was worried about the trip. It was at that point I made a promise to myself never to let diabetes stop us doing something we wanted to do, to never let the ‘it’s easier not to do it’ attitude take control, as long as we weren’t going to be reckless. With recklessness in mind and because of my limited knowledge of AMS and even more limited knowledge of diabetes we decided to skip Ladakh and go elsewhere.

What resulted was a 2700 mile backpacking trip using overnight and daytime trains, over four weeks, from Amritsar in the north, to Goa. We prepared for the trip with our recently learned diabetes knowledge and with the hospital’s email addresses and phone numbers close at hand. Everything went very well and whilst we had a few diabetes related problems it never stopped us from doing what we all wanted to do.

But we never would have gone if Amy hadn’t had asked that question.


You can find out more about that trip by reading our Monsoon Meandering blog.

 

All aboard the diabetes coach

On the 29th December 2010 Amy boarded the type 1 diabetes coach – destination unknown – and we all joined her. Luckily we can get off for a breather whenever we please, unfortunately, she can’t.

We were lucky that Amy didn’t go for too long before being diagnosed; she was only 22 mmol/l when admitted to hospital and whilst she’d lost a fair bit of weight she wasn’t very dehydrated and didn’t need to be placed on a drip. Afterwards, we estimated that she’d lost one stone (14lbs, 6.4kg) and how we didn’t spot her weight loss is a mystery to us all.

Come the next day – New Year’s Eve-Eve – life seemed completely different. Emilia and I went to the hospital to find two tired people who’d got some sleep inbetween the tears. Amy look bright, so much better than the day before and spent time talking with her sister whilst Jane and I spoke with the DSN about everything we needed to know for the next couple of weeks.

Amy had been given a pad and a pen to write down any questions she had. I took one look and was amazed the things that mattered to her to most. First on the list was ‘does this mean I can’t go to India anymore?, followed by quite a few more – see First questions from a newly diagnosed diabetic.

Whilst Amy and Emilia played some games on the hospital bed Jane and I were taken aside for the (almost freaked us out) ‘what to do if your kid doesn’t wake up training session‘.

Later we met with the dietician and had further chats with the nurses and doctor.

The quality of care from the moment we arrived at Sophie’s Place had been impeccable.

 

 

The ‘What to do if your kid doesn’t wake up’ training session

Oh. My. God.
One day you’re told your child has a serious illness and the next you’re being told what to do if they don’t wake up. It’s been a hard 24 hours.

30th December 2010, just after lunch:

Amy was eager to get home as soon as possible, to get things back to normal. We weren’t so sure. In some ways it was no different to when Emilia was born, we wanted to get out of the hospital as soon as possible; we wanted to stay there for our own security.

One of Winchester’s superb DSNs said to Jane and I that she needed to show us how to do something and that perhaps we should do it away from Amy. It was call a good call, whereas my suggestion of the ‘away from Amy’ place being the vacant bed next to her with the curtain around it, probably wasn’t.

Sat on that bed, with the (not-quite-sound-isolating) curtain around us, the DSN explained about severe hypos and how to use the Glucogel.

And then she did it. She got out the Glucagon kit, Jane’s worst nightmare.

The DSN realised that this wasn’t going to be our favourite subject and dealt with us very well, calmly and professionally but we had no chance of playing truant from this lesson. We understood the need to understand.

We each had a kit, with its bright orange case, its needle and its vial. We followed the instructions and all went well. We felt confident and did it again.

I hope I never do it again.

Diagnosis – the first injection

After being told Amy had type 1 diabetes we were given some time to be together before one of the wonderful DSNs came back to enquire whether Amy was hungry as it was now dinner time. She was hungry, as she had been for the last couple of weeks.

Her dinner order was taken and it surprised me that she was immediately offered what we call ‘weekday food’ or more to the point ‘crappy food’, consisting of things like Smilies, which most 10 year olds like Amy adore. Of course I had the common misinformed opinion that type 1’s couldn’t eat certain foods and I guessed ‘crappy food’ fitted that bill.

We were transferred to the room which was to become Amy and Jane’s room for the night and a second DSN came in, saying that dinner would be ready soon and Amy needed insulin. It was all handled very, very well, with calmness, control and bucket loads of support from the DSNs. I really liked how everyone focused on talking to Amy, not the parents; it made complete sense but I’d rarely witnessed this before.

Then the horrible question came from the DSN: “Amy, who would you like to do your injection?”. I shuffled forward in my chair expecting to do it – remembering Amy’s fear of needles and Jane’s fear of blood – before I was stunned by Amy’s response.

“If I’m going to have to do this for the rest of my life I might as well start now.”

Waves of amazement preceded waves of pride which preceded waves of tears.

It was quite a slow process but she did it. I was so proud.

Diagnosis – a Father’s viewpoint

Whenever I think back to Amy’s diagnosis there’s a part of me which harbours a nagging doubt about whether a particular event played any part in the start of the autoimmune destruction of Amy’s pancreas. I know what the doctor’s say, that it just happens and you can’t do anything to stop it, but surely they’re wrong: if a person doesn’t get ill in the first place the autoimmune system won’t attack the pancreas. I guess we’ll never actually know until they pinpoint exactly the cause of type 1 diabetes.

Amy had been ill with the usual cold/man-flu/call-it-what-you-will which afflicts most people as soon as kids go back to school, the days get colder and the heating gets switched on. I had tickets for her and me to go and see her first ever gig, the dance act Pendulum at the BIC in Bournemouth on the 7th December 2010. During the week before with Amy still suffering we debated on whether or not she should go but I put my foot down and insisted it was only a cold. If you’ve never been to a Pendulum gig watch this and you’ll understand just how hot you get – by the end of the evening we were completely soaked (I know, euw!). It was a late night out for Amy so to help her stay awake we bought and consumed lots of her favourite orange fizzy drink. It was full on sugar. She was still quite poorly a few days later.

Back to the diagnosis story.

On the 28th December 2010 Emilia and I went to see Southampton FC demolish Huddersfield 4-1 and returned in bouyant mood to hear about Jane and Amy’s shopping trip and the impending visit to the Doctor. Diabetes was briefly discussed and a quick Google confirmed what I already knew, that if Amy had diabetes it was type 1 and that meant injections for my little girl who has a fear of needles. I was devastated at that possibility.

The next day Jane and Amy went to the doctors – read the Diagnosis post – whilst Emilia and I stayed at home. When Amy went to see her friend about the party Emilia and I stayed at home and that’s when the phone rang.

I took the call which said we needed to go to the hospital that afternoon, at 3pm. Emilia had stuff to do and didn’t want to come to something that was a routine appointment so I (somewhat harshly) told her the reality of what the visit was likely to mean and the daily injections which Amy would have to endure. You don’t get a call back so quickly if everything’s okay.

During lunch I watched Jane, she seemed so calm, I couldn’t understand how. We left for the hospital, totally unprepared for an overnight stay, they could have warned us.

In the consultation room we all sat down as the DSN spoke to us. I could see it in her eyes already, clearly breaking news like this didn’t come any easier through repetition, and I just waited for the words ‘type 1 diabetes’. I looked at Amy and Jane and there wasn’t much of a reaction; Emilia, like myself, looked full of tears, as did the DSN.

The next hour or two was a blur. I’ve no recollection of what happened next.

It was dinner time and Amy needed to inject insulin, or bolus as it’s really called, and she opted to do it herself. I was so proud, she was only 10.

Emilia and I left to go and get some pyjamas for Amy which meant a trip back home. We knew that the local Marks and Spencer’s would be open so we decided to buy Amy some next pyjamas as a treat. After some food and back at the hospital and Amy seemed okay but had clearly shed a few tears. I gave some food to Jane, spent some time cuddling and talking and left my little girl and her Mum to spend the night in hospital.

Diagnosis – 29th December 2010

Amy was diagnosed with type 1 diabetes on the 29th December 2010, aged 10. It was an open and shut case, no possibility of it being anything else.

When I look back now I can see that she displayed many, if not all, of the classic signs of someone with type 1 diabetes. Of course, back then we didn’t what they were or what to look for.


STOP (for a moment): Do you know the classic signs of someone with undiagnosed type 1 diabetes? If not, please take some time to view this excellent video by Diabetes UK and JDRF.


The day before, Amy and Jane had gone shopping but just before going Amy drank a lot of water. In the shopping centre she needed the toilet, then said she was very thirsty, she was trapped in a circle of constant drinking and urinating, a first circle of blue. A classic sign; we didn’t know.

Clearly something wasn’t right.

Jane had previously spoken with one of our good friends who mentioned the possibility of diabetes but it wasn’t until Amy started drinking pints of water that Jane recalled the conversation. The appointment was booked for the 29th at 10am, a few hours before Amy was due to go to her best friend’s birthday party.

Our doctor didn’t need time to ponder the options and after testing for ketones and her blood glucose level he called the hospital quickly, saying that they’d call us if we needed to go in, but he’d see if any visit could be postponed until the 30th so Amy could attend the party. Afterwards, Jane and Amy went to visit the birthday girl just to let her know that she might come, she might not.

A few minutes later that bloody phone rang. My heart sank.

At the Royal Hampshire County Hospital in Winchester hospital we went into Sophie’s Place, an area created by the charity Sophie’s Appeal in memory of little Sophie Barringer who lost her life to Wilm’s Disease in December 2004, aged six. Jane was her teacher.

A nurse did another few tests and discussed some personal history, asked about Amy’s symptoms and checked her blood glucose again. We were led into a consultation room by the DSN (diabetes specialist nurse) who started chatting with us, but at the time I felt like it was small talk, just some calm before the storm.

Then a word we didn’t want to hear was spoken, it started with ‘D’, it ended with tears.

Amy didn’t know what it really meant. Jane didn’t know what it really meant. I glanced at Emilia, we both knew exactly what it meant. I glanced at the DSN, her eyes were watering.