Guest blog by Victoria Ruszala – Climbing new heights and making new mistakes

Preface by Kev: I truly believe travel broadens your mind but it’s easy to see why people with diabetes think twice. I know from our month long backpacking trip to India that everything is not plain sailing, but most issues can be overcome, or concerns minimised, with a bit of planning.
The backpacking trip however was not my original plan: we were due to go to Ladakh, crossing the Himalayas over two days, sleeping at altitude and risking acute mountain sickness (AMS). I got scared at trying to manage diabetes and AMS and immediately changed our plan to avoid the mountains, something I very much regret.
Victoria is the first person with type 1 diabetes I’ve communicated with who’s tackled altitude, so I was keen to hear her travel tales.
Anyway, get yourself a drink and sit back and read about Victoria’s amazing trip to Borneo, climbing Mt Kinabalu and how having Type 1 Diabetes did not stand in her way.

Climbing new heights and making new mistakes
by Victoria Ruszala

When Kevin asked me to write this blog post I thought – really? Why would anyone want to know about my holiday experiences? Then through lots of contacts on twitter I realised that what I do really is seen as exceptional by some people. It’s that that has me penning my random thoughts today, that and the idea that if people read this they might be convinced that the world is waiting for them….
I was diagnosed aged 9 in 1991. To save you all the maths I am now 32 years old. It may surprise you to realise that back then cartridges hadn’t even been invented – I used insulin syringes and vials for the first two years! However over time (thankfully) technology moved on and I was put on a basal bolus regime aged 11 (the youngest in my area at the time) and it stayed that way. I do now have a pump, but I have only had it for 3 years so I understand how difficult it can be to travel with different kinds of insulin regime.
My parents always took me on holiday every year to Spain or Portugal. They had the attitude that diabetes wasn’t a problem, just a challenge to overcome. This has stood me in good stead all my life – if I plan everything properly then nothing can stop me. However I never went further afield than Europe until I was 26 years old. This wasn’t fear – it was just a lack of interest! It wasn’t until I met my (now) husband at university that I met someone who convinced me to try a real adventure. Si had been travelling throughout his gap year and had continued during uni too. He was cool about my diabetes and because we met playing ice hockey (that’s a whole different story!) he didn’t see why I couldn’t do anything I set my mind to. It did however take him another 4 years to convince me to really go for it.
I was nervous about this and so set out some ground rules. Si is a real ‘turn up with just a ticket’ traveller and the very idea of this drove me crazy – how could I possibly plan meal times, insulin dose and treat hypos and hypers if we didn’t have an idea from one day to the next? So the compromise was that we would go somewhere ‘out there’ but as part of an organised group. We chose Borneo with Intrepid– mainly because I wanted to see orang-utans and because he loved the jungle and had never been to Asia. This was the best decision I could have made – it took the pressure off of me to ‘organise’ the trip and allowed me the space I needed to focus on insulin and food. It also meant that if I was concerned about my health at any point there was a contact who knew how to access healthcare. I would certainly recommend this approach if you have never been anywhere particularly extreme.

There was a particular part of this trip that really excited Simon – climbing Mt Kinabalu (4095m). One thing I forgot to tell you about Si – he’s an extremist when it comes to sport. I on the other hand am much happier with a glass of wine (sorry mum/dr) and a good book. At first Si said I shouldn’t do it. I think this was a cunning ploy on his part, as the first thing that happens when I’m told I can’t do something, is become determined to do it! So this is where the preparation part kicked in. I researched altitude and diabetes ….. and came up with nothing. Diddly. I couldn’t find any real information anywhere apart from RunSweet which gave profiles of people that had climbed mountains. This told me 2 things – it could definitely be done and it would be up to me to work out how my own body responded. I therefore got sneaky.
I am a clinical pharmacist – I work in a hospital and therefore have access to a number of healthcare professionals. They put me in touch with Professor Chris Byrne who was carrying out a trial on the effects of exercise in T1DM. I managed to convince this eminent professor that lending me his super expensive continuous glucose monitor and activity monitor equipment for my 5 week jaunt in Borneo was just what his trial needed! The CGM would give me the confidence for the mountain climb – I didn’t know what my sugars would do and this would tell me the trends rather than just single point readings, which would allow me to adjust my insulin and food safely.
The other bit of preparation I did was get equipped at climb-fit.com and get fit. So I went to the gym a few times and walked to work. Seriously that was my training (to be fair it was bloody hard work to get to the top of the mountain and if I had known I would probably have put a bit more effort in. Hindsight is a wonderful thing). I also spoke to the dietician and asked for advice about what food to take to help on the climb. They hadn’t really had any experience of this so together we decided that cereal bars would provide a good amount of energy and glucose (we were going to have meals on the mountain so wasn’t massively concerned – it was more hypoglycaemia that I was worried about). This advice has proved invaluable on all of my travels – they pack easily, they don’t overtreat the hypo and cause rebound hypers and its easy to get more of them, even in remote countries. I would advise anyone travelling to have a few to hand.
We went to Borneo and had a whale of a time. As usual (I knew from my previous experiences) the hot temperature and humidity caused my CBG to drop. So I reduced my Lantus by a few units. The Asian food was a nightmare to carb count – but once I worked out there was pretty much sugar in everything I just guestimated and usually it all worked out ok. I had a few hypos but I suspect they were more beer related than any real issues! And then the day of the climb loomed. The night before, I had taken the radical decision to only give myself half the usual amount of Lantus. I did this for 2 reasons – walking up a mountain was lots of exercise and therefore I wouldn’t need as much insulin right? And I was terrified of going hypo and falling off the mountain. I figured that if I got high I would just give myself extra Humalog. The morning dawned and we were given a cooked breakfast before we set off. I then made my second radical decision – I wouldn’t have any insulin for this meal. It was mainly fat rather than carbs (one hash brown and some baked beans) and my CBG was 10mmol/l. As I was sure the exercise would burn it all off, I figured it would be fine.

Victoria on the mountainVictoria on Mt Kinabalu

At first it was fine. My CGM showed my sugars were about 12 and I figured I was well away from any hypo danger. Then they started to go up. Then a bit more. Then a lot more. What I had failed to take into account was adrenaline. I know this now, but then – well this was me finding it out. Adrenaline will cause your sugars to rise rapidly. Your body is getting ready for fight or flight so your liver kicks out sugar for your muscles to use. But as a diabetic you don’t use it. So you just get higher. And higher. Combined with my genius plan of no insulin and halved basal, this resulted in a rapid rise to 27 mmol/l after 3 hours. I could see from the CGM that it was still trending up so I thought – no problem I’ll just have my breakfast insulin. Then it continued to rise to 29 mmol/l. ‘eek’ I thought and injected some more. The CGM stopped measuring at 35mmol/l. My CBG monitor had read Hi for an hour before that. I was feeling very odd and quite sick. I was clearly going into DKA at 2500m.
I then made yet more bad decisions. I actually didn’t tell anyone what was happening, I kept climbing higher and Si wasn’t with me as he had chosen to take a different trail with some of the others in the group (another genius plan that we haven’t repeated since). I gave myself a total of 54 units of insulin in a 4 hour period. Not much for some but I usually have 45 units in an entire day, including my basal. The CGM gave me the confidence to keep injecting – if it was still trending up I was still in trouble. I just kept injecting until the trend started to go down. It also helped that I was drinking huge amounts of water to combat altitude sickness and dehydration – so I never quite reached a point of collapse. I got away with it – by the time it got to lunch my sugars had fallen to 15mmol/l. I gave myself yet more insulin, had lunch and kept on climbing. My sugars stayed at 10ish for the rest of the climb to the ‘rest house’ at 3270m. I had dinner (proper insulin again, BG 15mmol/l!) and went to bed ready to begin the summit at 1am. I woke up 2 hours later with a hypo of 2.8mmol/l. This was my second learning point – exercise effects don’t stop when you do. When the activity monitor I was wearing for the trial was analysed back in the UK it actually showed that the effects lasted for 24 hours after I had stopped exercising. I never knew this and I’m many others don’t as well.
The summit was relatively uneventful – I made it to the top for sunrise. The CGM worked fine but my regular monitor (which I had to use to calibrate the CGM) went crazy. One minute it would read 26 the next 2mmol/l. I had to just trust the CGM which showed I was 9. I returned to the base camp, tired, exhilarated and full of new knowledge about my body. After that experience (and dealing with it alone) I actually grew in confidence – if I didn’t make rash decisions I understood my body well enough to try anything.
I have continued to travel the world, each time trying out a new challenge. Si and I now do it alone, although if I feel particularly nervous about some aspects we organise guided trips or groups to do it with. Here are my key learning points from my first climb at altitude:
• Altitude itself can force your CBG high or low – there is no way to predict
• Keep boluses roughly the same with about a 10% decrease – the amount your body needs for food stays roughly the same
• Test regularly – lots of factors are having an effect at the same time
• Have 2 different BG meters – none are tested at altitude and cold can affect reliability too
• Drink lots of water (helps AMS and DKA)
• Be brave with corrections – you may need more than usual.
• Exercise and altitude can have an effect for up to 24 hours so keep close eye on sugars for at least another day
• Be self-aware – you know how you react to things in normal life and it won’t change that much

Victoria and Si at the topVictoria and Si at the summit of Mt Kinabalu

Getting an insulin pump – through the first night

Back at home and bouncing with joy

We arrived back from the hospital with pretty good glucose levels. It was about the same time Amy’s friends were leaving school.
She texted them “I’m home, come over and see my pump”.
10 minutes later several friends turned up and they stayed outside talking in the garden. 20 minutes after that and Amy’s gone hypo (2.6mmol) as they’ve been bouncing on the trampoline, a lot.
I remembered the conversation from earlier about testing out the temporary basal rate; what an ideal time that would have been, if only we’d thought about it.

First extra bolus at home

Amy had already done her first extra bolus at hospital for 3 chocolates, it had gone well. This was a big thing for Amy as she has missed out having snacks/treats for 2.5 years.
She’s always had the choice to have snacks when others are but if they’re more than 15g carbs then she should give some insulin for it. She hates injections with a passion and virtually always chose not to, thereby missing out on snacks. Only now have I realised how much stuff we’ve stopped doing because of this, such as going to the cinema and having a snack during the film. So looking forward to these things now.
Anyway, yesterday afternoon Amy wanted a snack and chose one of the iced buns we’d bought that day. Its 23g carbs would have needed a bolus so on MDI she wouldn’t have had it. Now though, there was nothing stopping her so she tested, bolused and ate. It actually took longer to eat the thing than prepare to eat it. That’s a big bonus.

Fast food

No, don’t panic, we didn’t hit the fast food restaurants last night, but we did have fast food…let me explain.
The normal meal time routine involves calling Amy 10 minutes before dinner is ready; getting her to do a BG test; calculating her carbs (with her) whilst serving up the food; eldest daughter goes and eats; we stay behind to do Amy’s injection; Amy finally gets to eat.
We’ve kind of got used to food starting to go cold, it almost seems normal.
Last night’s meal was different in that Amy carb counted and immediately bolused, in seconds.
The ritual of preparing the injection site, preparing the needle, hovering the needle over the site for what seems an eternity, doing the injection…these have gone, disappeared, hopefully forever.
Eating hot food just might catch on again.

Two hourly testing results

We’ve got to test Amy’s blood glucose levels every two hours for the next 48 hours at least. This is something everyone going on a pump seems to do, although for many they have to do it for a week.
Amy’s levels have been:
Time, BG mmols, correction dose
16:00, 2.6, 9g carbs – should have been 15g but we mis-calculated Dextro carbs
17:00, 5.2
18:00, 7.2
20:00, 3.1, 9g carbs
21:00, 5.2
22:00, 9.2, 0.3u insulin
00:00, 11.7, 1.55u insulin – we would never have done a correction like that before
02:00, 4.2, woohoo, that last correction worked
04:00, 4.7
06:00, 3.6, 9g carbs – interesting as to whether this is hypo or whether 3.3 is the limit
08:00, 5.7

I’d call that pretty darn good.
#Winning

Getting an insulin pump – the wait is over…almost

The wait is over…almost

Just a quick update for now…
In three hours time we’ll be starting Amy’s appointment for fitting the pump.
We’re all excited, Amy especially, she’s been counting down the injections one by one, there’s only one left which she’ll take at breakfast time. Luckily we remembered to only take half the Levemir last night.

Questions, questions, questions

I’m normally prepared for days like this, normally writing down lists of questions I need or want answers to. When Amy and I went to the “Portsmouth Hospitals’ Diabetes “Sweet Meet” we’d written loads of questions – we were the only ones who’d done that I think – but we never asked any of them. The day had just flowed nicely and the preparation we’d done wasn’t required.
So today we’re going to wing it: I’ve not prepared any questions and I can tell you that I’m shocked I haven’t. Surely today is more important than anything else we’ve done recently? Surely today we need to leave the hospital in total confidence?

Learning together

There’s no doubt that I’ve done a lot of research about the pumps and whilst I’m sure I know relatively little compared to people who’ve used a pump for a while, I am sure that I know more about the features of this pump than the hospital does. It’s to be expected, Amy will be the first paediatric Animas Vibe wearer, so the DSNs have never needed to know anything about it.
Today then we’ll all be learning together: we’ll be learning about how to program the basal rates; the DSNs will be learning about the pump.
I hope today will prove what a good team we’ll be together. I have not doubt it will.

Over-confident?

I’m a little worried that I’m feeling over-confident about today. Lord knows I’m nervous but it’s just because it’s a major change for my daughter, if it was for me I wouldn’t be so worried.
My confidence boils down to a few things: I’ve done a lot of research, we’re not going into this blind; the #DOC has lots of Animas Vibe wearers who I know will be on-hand almost 24/7; I have phone numbers of parents whose kids are pumping with Animas.
It’s good that the appointment is today as we’re but at the hospital tomorrow for Amy’s quarterly clinic so we can report back, face-to-face, any issues we’ve had before the weekend starts.

Wish us luck then

…and expect a few tweets 🙂

 

Note to DSNs, Doctors, diabetes clinics and CCGS

I’ve referred to this journey towards a pump as a ladder, once which had rungs but just how many we didn’t know.
This process could have been a little easier for us if we’d known at any point how many steps away from the pump we were. Just a thought for you.

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 – 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

Going back to school – a Mother’s view

 

Nerves and reassurance

Amy was a bit nervous about going back to school but I wasn’t too worried as our diabetic nurse had reassured me that the office staff at Amy’s junior school were fantastic.
It was the start of the spring term and our life now seemed totally different.
 

Not much sympathy from my workplace

On the first day I couldn’t take her to school although I desperately wanted to, as I work in a preschool, my manager was off sick and the deputy manager was very unsympathetic. I remember clearly the deputy dismissing my worries as if Amy had a cold. She was annoyed that I had requested to leave work for half an hour at lunchtime to give Amy her injection and said “Oh well there’s lots of children there with diabetes, why can’t the office staff just do it.” I was angry and hurt that someone could be so unfeeling. My baby wanted and needed me there as she was frightened and anxious about injecting in a strange place. Kev worked from home and did Amy’s first injection in school as luckily he has a very understanding manager and can work from home if necessary.
 

Day two, a day off thankfully

On the second day I wasn’t working and arranged to meet our diabetes nurse at reception. I remember her explaining everything to the ‘office angels’ although diabetes wasn’t something new to them. One of the admin officers, who I had always been a bit wary of, was so calm and reassuring, she was used to treating diabetics as there were two others in the school already. Amy seemed reassured as she was shown where we could do her injection at lunchtime and she had her own tray to keep all her hypo stuff in. She seemed to be coping quite well and she almost liked the celebrity status: being allowed to jump the queue at lunch; leaving lessons 5 minutes early before lunch; being escorted by a friend for lunch; being allowed to take her toy cat, “Little B”, to every lesson.
 

The ‘office angels’

I remember by the end of the fourth day that I was overwrought; angry because of the unbelievably dismissive attitude of my deputy manager and exhausted as I had to be strong for Amy. The deputy had made a snide comment as I left at lunchtime and when I got to school the office staff were so nice to me that I just burst into floods of tears. The admin officer gave me a big hug which made me feel loads better and she reassured me that I was doing fine and Amy was coping very well as she had a lovely family supporting her. This is why I will always think of them as ‘the office angels’.
 

Winning the postcode lottery

Having talked to other mums of diabetic kids who have told me horror stories about their school’s provision, I realise how lucky Amy was to have developed diabetes whilst at Fair Oak Junior School. The staff at the school helped Amy to cope with a life-changing condition, making sure she was okay, helping with her injections, phoning me if Amy had hypos.
I have nothing but admiration and gratitude for them but especially my ‘office angels’. I will never forget their kindness.

Going back to school – a diabetic 10 year old’s view

 

In two minds

I was in two minds about going back to school: I wanted to see my friends as I hadn’t seen them for ages but I had several concerns about dealing with diabetes at school when my parents weren’t around.

 

My first moment in class

When I went into class on that first day I was escorted by one of the office ladies who told my teacher about diabetes. I didn’t think it was that serious. That morning we did an activity where you had to write down your New Year’s resolutions and then if you wanted to you could read them out. As I didn’t care if everyone knew or not, I wrote and said “to do all my injections properly”. Now, I wish I hadn’t because that meant I had to tell everyone in my class I had diabetes. I didn’t care about everyone knowing, not then anyway, but now sometimes I wish that not everyone knew as I don’t want them to think of me as a diabetic first and a child afterwards. Daddy says people see me for my personality first, not diabetes, but I’m not sure.

 

Injections

I wanted Mummy or Daddy to do all my midday injections with me but it was hard as they both had to work. My mum works at a pre-school quite close to my school therefore it was always her that had to come in for an hour during lunch. I was very happy that she could come in, so you can imagine how upset I was when she told me that she couldn’t do it on Thursdays. For the first couple of Thursdays Daddy come in to do the injections but he couldn’t do it forever as his work was 30 minutes drive away. I said to Mummy that she would keep saying the same for the other days until eventually she wouldn’t come in at all. And I was right. I started doing the injections with the office ladies, but I wanted my Mum. I felt like I had to control diabetes all by myself. I was scared.

 

Friendships

Luckily for me I have a lovely set of friends and that meant that this disease would not affect our friendship. All my friends volunteered to go to lunch early with me (out of kindness, not just because they wanted to go to lunch early) but I could only pick one, so they took it in turns. I am so glad my friends stayed by my side, it didn’t even occur to me that they might ditch me as a friend and it would have been a very big shock if they had.

 

Where’s my P.E. (Physical Education) class gone?

I was annoyed EVERY time I did P.E. (which was a lot) as I had to go all the way to the office and do a blood glucose test. If I was alright then I would go to P.E. but if I was lower than 12 I had to eat something before. Unfortunately I didn’t always know where P.E. was, it could have been the hall, the field, the upper school playground, the lower school playground, the millenium garden or even the running track. So I would have to visit every single one of those places and sometimes by the time I had almost visited them all, the class would have finished P.E. and be back in the classroom getting changed!

First injection at home, my best friend saved the day

30th December 2010
Good friends of ours were due to visit on 30th December for some festive fun but I thought Amy would want to cancel as it was the day she left hospital with Type 1 Diabetes. Instead she surprised us all, saying she didn’t want something else ruined over Christmas, so they came.

It was all a bit weird, something akin to the fear we had when we brought home newborn Emilia but without the joy. Our friends turned up and the atmosphere was (very unusually) a little strained as no-one really knew what to say. We were all exhausted but we put a brave face on it and tried to pretend everything was normal. The evening was fine until Amy had to do her Levemir. We went upstairs to her bedroom and then followed a couple of hours of hell.

The last injection Amy had done in hospital had not gone so well, it hurt her. Therefore when she came to inject at 8pm she had that memory vivid in her mind. Mixed with the exhaustion and emotion of the last few days I should have realised there might be trouble, but I was totally unprepared for what followed. Amy had seemed so confident in hospital but when she tried to inject at home she freaked out.

It was heartwrenching as a parent to watch your child psyching herself up to do her injection. She had the needle poised over her leg, taking a deep breath then she would burst into sobs saying she couldn’t do it. Each time I suggested that I could do it but since I hadn’t practised (on her) in hospital, Amy was adamant, “No, you might hurt me!” I started off calm, eventually explaining to Amy that she had to do it or we would have to return to hospital and she didn’t want that. Kev came up after about 20 minutes and he tried to reason with her but by this time she was overwrought and emotions were running high. We cuddled as she sobbed, her face all blotchy and red. Once Amy was calm we tried again to no avail. After nearly an hour I started to loose my patience I’m ashamed to say, but I was exhausted and I knew she had to do this injection. I raised my voice and told Amy that she would have to let me do it. More tears.

Thank goodness my best friend, also called Jane, was there. We went downstairs as we were getting nowhere upstairs. That was the best decision of the night. Jane’s daughter had given Amy a small beanie that resembled Bagpuss and Jane distracted Amy suggesting she thought of a name for him. Then Jane laughed, saying “I know Diabetes is a right bugger. So lets call him Little Bugger, but you best call him Little B for short, especially at school.” That was the first time Amy had laughed since being diagnosed. It was like a breath of fresh air. Jane also said to Amy that she should feel angry and sad and that anytime she wanted to scream and swear about diabetes she could phone Jane and swear to her heart’s content.

Jane, being not so emotionally involved, defused the situation and brought laughter at a much needed time for which I will always be eternally grateful. She thought of using bribery saying “You know, you should be using this to your advantage. You could get anything out of your parents if you do this injection.” Amy smiled and said she would love to go to build a bear. Jane then offered to pay for her to get one and arranged for us to meet up the very next day. Thank you Jane.

Amy managed to do her Levemir injection with Jane and me beside her. What a relief.

Little B went to bed with Amy and to school until she sadly lost him on the school playing fields about 6 months ago. She still misses him.

Amy never has had to phone Jane, to swear down the phone, but she knows the offer is always there. Friends are a pillar of strength in times like this when you just can’t think straight anymore.

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.

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 diabetic 10 year old’s viewpoint

Feeling poorly

I had been off school sick in early December, away from my friends who I missed. But it was only a horrible cold and I was sick once or twice. It was nothing to worry about, soon I’d be okay and back at school again.

I’ve always been pretty rubbish at knowing when I needed to go to the toilet but it was getting worse. I was getting really, really, really thirsty and ended up downing pints of water to try and quench my thirst but nothing seemed to work. The more I drank the more I went to the toilet and I remember noticing that there was no colour at all to my wee. But I don’t remember this happening at school at all, which is strange seeing that I was there for two weeks after I was ill and the Doctors say that the early December illness probably caused the problem with my pancreas. Perhaps there’s a delay.

We broke up from school for the Christmas break. I love Christmas because I get to have fun decorating the Christmas tree and seeing all of my family and I’ve got lots of them to see. I love the celebrations, the family ones and the chocolate ones. We’re allowed to stay up later, things are more relaxed, we can snack on chocolates if meals are a little later than normal. When I wanted a drink I’d get it myself, I’d even have my favourite Fanta if there was some in the fridge. It was great.

After Christmas I went shopping with Mummy and before I went out I remember saying “can I take a bottle of water with me” and Mummy said “don’t bother we won’t be that long”. But I did need it, I knew I’d need it and I was right. Why didn’t she listen to me? We’d only been at the shops 5 minutes and I needed the toilet so I went into McDonalds and used theirs. After coming out I complained I was thirsty and asked “can I have a drink”. Mummy said “but then you’ll need the toilet again”. I didn’t get that drink.

We went into Iceland and I saw a pack of fruit juice and pleaded for them. “No”. “No”. “Alright then if you’re really that thirsty”. I opened it immediately after we’d paid for it and drank it. Then I asked for another. I didn’t get it.

At the Doctor’s Surgery

The next morning Mummy woke me up and told me I had to go to the Doctor’s at 10am. At the Doctor’s Mummy explained about the drinking and toilet visits. He pricked my finger and took some blood which he tested but he didn’t really say anything. There was lots of words, I didn’t understand any of them but I didn’t think it was serious as Doctors just give you medicine which you take for a while and then you’re better.

I heard the word ‘diabetes’. I think that’s the first time I heard the word directed at me. I thought about my Grandad who I knew had diabetes and I knew it just meant that he couldn’t quite eat as much cake as he’d like to. I didn’t know there were different types. The Doctor said he’d phone the hospital and they’d call us if needed.

After the Doctors I went to one of my friends to tell her that I might not be able to come to her party and I gave her the present I’d bought her. When I got back Daddy told me that I had to go to the hospital at 3pm.

At the Hospital

It was only the second time I’d been to Winchester hospital. I don’t remember the first time as I was only 1 second old – I was born there.

I wasn’t worried at all. Hospitals didn’t worry me.

Sophie’s Place seemed really friendly and so did the people. They measured my height and weight and sat me down in the childrens’ in-patients area where they took my blood pressure. It still didn’t seem very serious and I felt quite calm.

We went into a room and a nurse came to see us. She said she was very sorry but I had diabetes and I would need to take something called insulin. I didn’t know what it meant but it didn’t seem very serious. She asked if I had any questions.

“Will I have this for the rest of my life?”.

“Yes, I’m afraid you will”.

I started thinking that this might be serious. I felt gutted, worse than gutted, the rest of my life! I remember looking at Daddy who looked really sad.

They told me they needed to take some blood and then left. They seemed to be gone for ages. I started crying with fear of the needle. They put something called a canula in my arm but before that they put on some cooling spray which really hurt. The canula didn’t hurt as much.

My First Injection

It was dinner time. The nurse told me I needed to have some insulin and we all did some practice injections on a stuffed case. Then she asked me who I wanted to do the injection.

“Me”.

I said this because I was scared that if Mummy or Daddy did it and it hurt then I wouldn’t be able to do anything about it. The nurse had said that the pencil case would be tougher to pierce than my skin and I was worried that Mummy or Daddy would do the injection too hard and it would hurt me. If I did it, I’d be in control and I could do it as softly as I could.

It didn’t take me very long to do the injection. I didn’t hesitate even though I didn’t know how much it would hurt me. I just wanted to get it over and done with.

I didn’t have any pyjamas, I wanted my teddies and Mummy didn’t have any food so Emilia and Daddy went home and to the shops.

They gave me my dinner, there were six Smilies and loads of other stuff. At home I only ever get 3 Smilies. I’d always wanted to stay overnight in hospital but not this way, but 6 Smilies! Hospital didn’t seem so bad.

Nanny and Grandad came over to look after Emilia and Daddy returned with some food for Mummy and some new pyjamas for me which Emilia had chosen. Soon it was time for bed and Daddy left. Afterwards I cuddled Mummy and cried, a lot.

Mummy and I settled down to sleep a little before they woke me up, as they said they would, at 2:30am so I could do another blood glucose test. We went back to sleep.

Diagnosis – a Mother’s viewpoint

On the 29th December 2010 Amy’s carefree childhood ended. I had no idea how a couple of days in late December would change our daughter Amy’s life forever and that of our family.

Amy and I were looking forward to a girlie shopping trip to Eastleigh on the 28th December to spend some of her Christmas money while her sister Emilia and her Dad went to watch footy.

But it all went wrong.

I reminded Amy to visit the toilet before we left (as she was quite often caught short) and she had a drink. We set off but within minutes Amy was saying she was thirsty and I remember being annoyed as she had already had a drink, so I dismissed her plea, not knowing this was a classic symptom of type 1 diabetes. As soon as we got there Amy then said she needed the loo, I couldn’t believe it, she’d only just been at home, how could she possibly need to go again? Little did I know this is another sign of diabetes. We dashed into McDonalds and I remember Amy had gone a very grey colour, unlike her.

Now when I look back I feel guilty that I was mean to her when none of it was her fault.

I decided to abandon our shopping as Amy wasn’t in the mood. She was still complaining of thirst and I was astounded when she downed a whole fruit juice in one go as Amy had never really drank vast quantities before. As soon as we got home Amy started drinking pint after pint of squash, interspersed with incessant trips to the loo.

Alarm bells were going off in my head.

I remembered a conversation I’d had with my best friend about her aunt who is diabetic but I pushed that diagnosis to the back of my mind, it wasn’t going to happen to my child. Instead I assumed it was a bad urine infection and knew I would contact the doctor in the morning.

The next morning I woke early and got an appointment for 10 o’clock.

I was still calm at this point. I recall the doctor testing her urine which had ketones in it (not that I knew what they were) then he wanted to do a fingerprick test. He produced a new glucose meter to test Amy’s blood – little did we know this machine would be so vital to Amy’s health for years to come. I was still in denial at this point as the doctor mentioned it could be diabetes and we would have to go to hospital to have another test. Niaively I asked him if we could postpone it so Amy could go to her friend’s party that afternoon. (I cringe when I think about it now.) The doctor promised he would ask the hospital, so Amy and I visited her friend to deliver her present in case she didn’t make the party.

By the time we returned, the doctor had already phoned to say we must go to the hospital at 3p.m. I still didn’t understand the significance of this. I suggested to Amy she wore a party top as although she’d miss the cinema, she might be back in time to go for the meal. How stupid was I?

As we arrived at Winchester hospital I remembered feeling very surreal, was this really happening? We entered the ward through Sophie’s Place, a waiting area for families set up by Sophie’s Appeal. I had had the pleasure of teaching little Sophie who sadly died, aged 6, after a brave fight. Seeing her smiling face on the wall was a lifesaver for me as it helped me put Amy’s condition into perspective. Diabetes was terrible but she was not going to die from it like poor Sophie. This one thought helped me to get through the traumatic hours that lay ahead.

The next few hours were a bit of a blur as the news sank in. The staff were fantastic. I remember going into a sideroom with the diabetic nurse, after Amy had another urine and
finger prick test, to be told she had Type 1 Diabetes. Kev and Emilia broke down into tears but Amy who was sat on my lap, kept asking ”Does that mean it’s forever?” as she couldn’t quite comprehend it all. I was numb but kept thinking she’s not going to die.

The nurses found her some left over Xmas presents to make up for the fact that she had missed her party but that seemed a lifetime ago. The really harrowing ordeal for me was when they put a canula in her hand to take blood. She was probably dehydrated which would have made it more difficult. Amy went berserk, she hated needles, she still does. At this point we were all in tears including the diabetic nurse.

The next hurdle was dinner as Amy had to inject before eating. Somehow this didn’t upset her as much as I thought it would, I guess the canula had been far worse. I remember Amy practising with the DSN on a cushion then I was so proud of her when she injected in her leg for the first time.

Amy devoured her nuggets and Smilies, she was starving! I then realised I was famished too. Kev and Emilia left to get Amy and me some overnight things. We were so totally unprepared, I had no idea we would spend the night in hospital. Luckily Kev also brought back some food for me, which I devoured, I was so hungry.

Amy and I were lucky enough to get a side room which was a godsend. Neither of us got much sleep. When everyone else had gone Amy sobbed ”Is this really for life Mummy?”.What an awful question to answer. Needless to say she cried herself to sleep.

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.