Soon after being diagnosed with type 1 diabetes in February 2002, at the age of 8 years, I was fortunate enough to be referred to the care of Dr Peter Swift at the Leicester Royal Infirmary. Six months later, I was attending Camp Charnwood, a 5-day residential summer camp for Leicestershire’s children with diabetes between the ages of 7 and 16 years. Now a firmly established event in the diabetes calendar, children are encouraged to participate in such challenges as canoeing, windsurfing, rafting, ice skating, go-karting, swimming, sailing and walking in the Peak District, so that they can see that their diagnoses need not restrict their activities. More significant, perhaps, is the interaction with others who have the same condition. The emotional security that such experiences provide cannot be underestimated. The Camp itself is the product of the hard, voluntary work of doctors, nurses, dietitians, parents and adults with diabetes (all part of the Leicestershire Parents Support Group of Diabetes UK [LPG]). For the past 3 years, I have been a volunteer at the Camp and have found it immensely rewarding.
As well as Camp Charnwood, the LPG organised an annual ski trip to Morzine in the French Alps, again designed to show young people with diabetes that nothing was impossible. With the help of Dr Swift and others, we learnt to ski; I am now a proficient off-piste skier and a lover of mountains.
Since 2006, I have followed the Dose Adjustment for Normal Eating (DAFNE) educational programme as a means of managing my condition. Signing up to DAFNE has allowed me to understand my diabetes a lot more by focusing on my blood glucose control in greater detail. It has provided me with an appreciation of the importance of accurate carbohydrate counting and the skills to adjust my insulin doses accordingly, rather than applying guesswork. By looking more closely at how much insulin I am taking at each mealtime, I have achieved fantastic improvements in the control of my condition.
Most importantly, however, being on the course with other people with diabetes reinforced that I am not alone when it comes to tackling the condition and certainly increased my confidence in adjusting insulin doses without always seeking the doctor’s advice. It brought me great satisfaction to know that I was the thousandth person with diabetes to complete the DAFNE course and I hope that there will be thousands more! Without all of the support outlined above, the thought of me reaching the sheer heights that I did this year would definitely not have been possible.
Expedition to Nepal
This year I took on a mountain of a task by signing up for an expedition to Everest Base Camp with Leeds RAG, a student-led fundraising society at the University of Leeds that enables students to take on challenges in order to raise money for charity. As a group of 24 people, we decided to support the UK-registered children’s charity KIDASHA (www.kidasha.org), which helps to protect underprivileged children across Nepal from the harsh realities of life in the slum areas.
To be honest, in my initial application for the trek I did not disclose that I had diabetes, as I felt that I would not be allowed, for medical and insurance reasons, to take part. You could argue that I was being irresponsible, but I was determined to get on the expedition. Once I had been accepted and the organisers had my £35 deposit, I decided to come clean. They did not see it as a problem and I was surprised that I did not have to provide a medical note from my GP in Leeds nor my consultant back in Leicester. They had to take my word that I had my diabetes under control. As far as I am aware, I am the first young person with diabetes to take part in this particular trek. I did, however, check with my consultant about how to manage diabetes with regard to possible altitude sickness and how to prevent my insulin from freezing.
I was away on the expedition for 25 days. The following is a selection of my diary entries, outlining the “highs and lows” (pardon the pun!) of the trip, which also included white-water rafting and a bungee jump!
Diary
Reporter: “Why do you want to climb Everest?”
George Leigh Mallory: “Because it’s there.”
Day 1: 29th March 2014
I finally finish packing 5 minutes before we’re due to leave for Heathrow. A minor row with Mum ensues over whether I should take, let alone wear, my medical ID bracelets that she apparently paid a fortune for. Stand-off on the porch and I concede. Before I set off, a quick check of insulin supplies, testing kit and passport. I have supplies in my main rucksack to go in hold and a substantial amount in my hand luggage. One of my close friends, who is also going on the trek, has a spare monitor and insulin in her baggage too.
Before I even arrive in Nepal I get “Delhi belly” on the 8-hour flight to Delhi and have to decrease my fast-acting insulin to account for the reduced amount of food my body is willing to take in.
Along with a wish to stay hydrated, I hope that the flight attendants have a powerful air freshener!
After transferring to Kathmandu, I finally arrive after 13 hours’ travel, feeling very ill and sick, but still keeping an eye on blood sugar levels and maintaining my long-acting insulin dosage.
Nepalese cuisine is delicious, but the language barrier is a problem. Cannot find “how many carbs in this meal?” in my Nepali phrase book.
Decide to reduce long-acting basal insulin from 26 units to 22, which works well [and was to stay the same for the rest of my trip]. Pack my duffel bag – only 10 kg allowed, so prioritise insulin and kit. Do not take all of my Twix and Mars [a regret with hindsight, as the higher up we went, the greater a Mars Bar was prized!].
Day 2
Wake at 5.30 a.m. First day of the trek! Breakfast of egg, toast and potatoes, so it was easy to count the carbs. Catch flight to Lukla, the most dangerous airport in the world! Arrived at 7.30 a.m. and started trekking straight away. Met our sherpa guides today. Was running low all day – need to check sugar levels more regularly, stay hydrated and reduce fast-acting insulin ratio from 1 : 10 g carb to 0.5 : 10 g carb. Eating a lot of oat bars to keep sugar levels up.
Day 3
What a day! A very tough climb and testing route. We ascended over 1000 m in 3 hours; it was like climbing up a wall. Sugar levels were low and I had to stop on one occasion, treating myself with glucose tablets and a Twix. Reduced fast-acting insulin before lunch; however, sugar levels still dropped. The higher we climb, the colder it becomes – a freezing night in the lodge.
Day 4
Woke up slightly high today, literally as well as “diabetically”, so will try and be more vigilant with carb counting, as well as decreasing fast-acting insulin to prevent sugar levels from dipping before I fall asleep. First glimpse of Everest (8848 m) and first sight of a few Gurkhas. Brilliant views! There are 14 peaks over 8000 m in the world and there were seven of them right in front of my eyes – amazing!
Day 5
Sugar levels still high. Again, need to be more careful with carb counting and insulin dosage – hard to gauge differences in the foods and portion sizes. Need to sort out the low before bed. Therefore tomorrow I will reduce my fast-acting insulin for my evening meal. [Generally speaking, however, I was eating the same sort of foods each day, so (with one or two hiccups) anticipating the patterns that my blood glucose levels would adopt was fairly straightforward.] By applying the carb counting learnt on the DAFNE course, I can more or less give the correct fast-acting insulin dosage. As we ascend it starts to snow and all becomes a winter wonderland, but the trekking conditions become harder. Chatted with Siddick and Sonam (sherpas) about climbing Mera Peak and Island Peak next year, which sounded fantastic.
People suffering from altitude sickness, not succumbed as yet…
Day 6
Spoke too soon! First signs of altitude sickness – bad headache, feel as though somebody is holding me upside down. I am also feeling very cold and have to take the ascent much more slowly.
Scenery is changing the higher up we go – more arid and lunar. Reach the village of Dingboche at around 4400 m (higher than Mont Blanc now, which is hard to imagine). Spent the evening playing cards with the sherpas. Low this morning, so reduce my fast-acting insulin ratio again from my normal to 0.75 : 10 g carb. Will keep the ratio like this until we reach Base Camp, as the trek is becoming more difficult and tiring.
Day 7
Still feeling ill, although I haven’t actually been sick. While we are not walking far, it seems more arduous. Everyone is suffering from bad headaches and the pace of the group has significantly slowed.
Thank goodness for the lodges and small cafés en route as I have managed to buy Coke, which is much needed today and is meant to help with altitude sickness. Also had some fried noodles, for which I delivered 4 units of insulin.
Much to my amazement, I stormed up the mountain and was the first to reach the Burial Ground (a memorial to those who have lost their lives trying to reach Everest’s peak). Got a closer view of what is probably my favourite mountain in the world, Ama Dablam. Then, serious altitude sickness – same symptoms but more intense (it was very hard not to confuse these feelings with having low sugars, as I felt incredibly weak). I was given garlic soup by the sherpas, a local remedy.
Day 8: Base Camp day
Freezing night of −15°C. Had the sense to wrap my insulin in my thermal socks and place beside me in my four seasons’ sleeping bag, my body warmth preventing it from freezing. Horrid night! Almost fainted, confusing altitude sickness with feeling low, although my blood reading showed 6.3. Took the morning’s trek slowly. Could see the tip of Everest and Base Camp in the distance. Despite feeling physically weak, I am determined to be the first of our group of 24 to get to Base Camp! After lunch, and a revival in spirits and energy, my trusted sherpa, Siddick, guides me over the glacier to ensure that I am the first to arrive!
Day 9: Sunrise over Everest
Awoke in the dark at 4.30 a.m. to climb Kala Patthar (5550 m) in order to watch the sun rise over Mount Everest. Reached summit for a spectacular sunrise at 6.30 a.m.
Began our descent – had to inject en route. Sherpas were surprised, as they had no idea that I had diabetes – which, I guess, was testament to the control I had over it whilst on the expedition.
Days 10–14: The descent
Coming back down was a lot easier than going up, taking less time and energy to descend to Lukla. The further down I went, the less light-headed I felt as the symptoms of altitude sickness seemed to wear off. Since the walk was becoming less exhausting, I adjusted my insulin ratio to 1 : 10 g carb, which worked nicely. Then, when returning to Kathmandu, I kept my basal insulin at 22 units and maintained a 1 : 10 g carb ratio since, even in the city, I was pretty active throughout the day.
After the trek, when I returned to the hostel back in Kathmandu, I weighed myself and discovered that I had lost over half a stone as a result of the trek. This was always going to be the case, as I was conscious whilst trekking that I was eating considerably fewer fats than I would do when in Leeds. However, I was eating just enough carbohydrates to keep me going whilst trekking, but I wouldn’t say I was taking a calorie surplus by any means. With hindsight, I think I should have consumed more food whilst trekking.
The aftermath
With a trip of this nature, it is inevitable that you take the rough with the smooth. On return from the Himalayas, after weeks of telling myself “it’s just Delhi belly”, I was diagnosed with giardia (a parasitic infection of the intestines) and salmonella poisoning. My diabetes was dramatically affected by these illnesses and, after having returned to Leeds, it really did put my independence to the test. As a result of my stiff upper lip, I spent several weeks bedridden owing to severe stomach cramps and the persistent symptoms of Delhi belly. My blood glucose levels were absolutely haywire, requiring regular blood testing and the alteration of both my fast-acting and basal insulin dosages. Despite my best efforts to carb count effectively, everything I ate (be it boiled rice or baked chicken) was going straight through me, leaving my blood glucose levels low. For someone with diabetes, being ill is always tough. Not only does one have to address the symptoms that come with the illness, but one has to also combat the effect it has on blood glucose levels, which is the last thing you want to deal with. However, good diabetes education and the right ongoing support really do prepare a young person to meet such challenges.
The message
All in all, the expedition to the Himalayas has had a positive impact on my outlook on my diabetes. It has given me great confidence to know that it really is the case that diabetes doesn’t need to restrict your achievements. Attending the DAFNE course and my experiences of being around doctors and nurses at Camp Charnwood have unquestionably provided me with the foundations to cope with the situations that I face and to manage my diabetes in different circumstances. I have found the continual, all-year support that I have received imperative in obtaining optimal control.
To end, I would like to leave the readers with a quote I once heard that has stuck with me ever since:
“I am NOT my diagnosis, I am just like everyone else, just a few extra struggles. That doesn’t make me weak, it makes me a fighter.”
I hope that other young people with diabetes can also take something from it.
Afterword – by the Journal team
It was with a great sense of shock and sadness that Diabetes Care for Children & Young People learned of the death of Richard Mayne on 17 July 2014. He had been travelling on the Malaysia Airlines flight that was lost over Ukraine. Richard was a young man who refused to let his type 1 diabetes diagnosis deter him from living a full and active life. We are grateful that he accepted the opportunity earlier this year to share some of his experiences and his positive outlook with our readers. The thoughts and best wishes of everyone associated with the Journal are with Richard’s family and friends.
NHSEI National Clinical Lead for Diabetes in Children and Young People, Fulya Mehta, outlines the areas of focus for improving paediatric diabetes care.
16 Nov 2022