DiAthlete’s Mother

 

There’s no doubt about it in my opinion, in being diagnosed as a child if it wasn’t for my parents support and ability to adapt to the condition instantly, I would not have achieved anything that I have done in life today for the cause.

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Parents play a crucial role for children diagnosed with type 1 diabetes

Both my parents, Mother and the Old Man, did not have a clue what diabetes was back in the time of the turn of the Millennium, where the-Boy-Me came down with the distinctive symptoms of constantly having a quench of thirst and the need to urinate. Type 2 diabetes just 15 years back wasn’t as known as it is today, let alone type 1 diabetes.

They had to between them learn all about type 1 diabetes, what it meant for my health, what each day the requirements were for my health – injections, blood sugar tests, diet, exercise… they had to learn it instantly.

15 years is roughly speaking a fifth of a life-time, so in that respect, it is a fairly long time to live with something. The changes toward the world of diabetes in that time have been vast, with many developments in care. On the eve of World Diabetes Day this year I had a chat with Mother. It is incredible how different things were…

“You had to have two injections a day on that mixed insulin and it was in a pot with a syringe. In the night, I would go up and prick your finger whilst you slept. Sometimes the levels might have been hypo, so I’d have to wake you up and give you something, even at 2 or 3am now and then.”

I remembered it. I remember some nights waking up and milking it a bit, having a biscuit and some energy drink in the early hours. If Mother hadn’t of stayed up and tested me, I would have slept right through a hypoglycaemia – which is a serious risk factor. An untreated hypo can lead to, at worst case, a diabetic coma if untreated. You can’t treat a hypo yourself when asleep.

I could be a miserable git, when having a hypo. The Old Man and my Sis didn’t always understand whether I was being rude or having a low. I wasn’t a rude kid, so it was kind of obvious, but it took a bit of getting used to. Mother was always good at recognising it.

In regards to my control, I am grateful for the team I had at my local clinic. They were positive the nurses. Whereas in my early years with diabetes, there just seemed to be plenty of negatives associated to diabetes. Although they were positive, I was always under the impression my control was good. It wasn’t. My A1C has regular 8.0+% and even a 9.0 in the records. This is largely down to being on that ‘Mixed Insulin’.

Mixtard 30 and NovoMix, were the two insulins I had, one first and then changing on to the other. I believe that neither are in existence today. Basically it was a concoction of long acting Basal and quick acting Bolus insulins in one mix. It meant that I had to inject twice daily at specific times and eat my meals, 3 meals a day, at certain times also. I never injected insulin during school.

As I grew older, this progressed to 3 injections per day, morning, evening and one after school time.

Diet-wise, the instructions Mother received was to load me with carbohydrates to prevent hypos in the daytime. I’d constantly carry sandwiches with me. If I went hypo, sandwiches were the key treatment… so it is no wonder my A1Cs were not perfect, I was up and down like a Yo-Yo.

Having said that, my control wasn’t terrible. I had an understanding and did not rebel. I made sure I always took my insulin each day and I tested my blood sugars. Maybe I should have tested more regularly than I often did, but I wouldn’t go a full day without testing at least. It is largely down to my very active lifestyle which helped me keep some form of control in tact. I’d constantly be on the go, running, playing football, involved with all sports.

I generally think sport saved my life to an extent. My A1C could have been a lot worse in light of the insulin and instructions in my early DiA-life.

But I do look back at things such as football and in speaking with Mother, I was quite proud of what I achieved. To play as well as I did as a boy, in consideration to my blood sugar levels, well, it opens up speculations of ‘what if’. I would lower my insulin for the day on a football day. Now, in my sports experience today, lowering insulin for football is something I would not do. Blood sugar levels tend to spike during a football match and it is often found that blood sugar levels after a game can be quite hyper. A crash usually takes place in the hours to follow after a game, that risks the hypo. Being hyper really pesters concentration levels. So with me, reducing my insulin in fear of the exercise impact and risk of going hypo, I was actually most likely boosting the hypers during the game. And I was quite a decent player in my boyhood prime. I regularly won Man of the Match for my club Crayford Arrows and every time I played for my School. I went on to successfully get in to Dartford FC’s youth academy too. In playing well in spite of battling blood sugar levels, begs the question really, what if my levels were fully stable during and I had full control of myself in a game?! England could have won the last World Cup…

But I achieved on the pitch and diabetes never prevented that in my youth years. I’ll always be proud for doing that.

The biggest of concerns, in my opinion, was in my mid to later teen years, when I finally come off the mixed insulin and began on what I am currently with today – basal and bolus in separate multiple daily injections. The insulin itself is the best for my control, no question about it. But the instructions given back then are nothing short of disgraceful once leaving the children’s unit of the clinic. I had a daily rate of insulin to inject for my ’3 meals a day’.

To put that in perspective, my insulin regime consisted for quick acting bolus:

Breakfast injection: 6 units each morning before eating breakfast meal.

Lunch injection: 5 units each afternoon before eating Lunch meal.

Dinner injection: 14 units each evening before supper.

We are talking those units of NOVORAPID!!! And this was combined daily with 30 units of a Basal insulin injection, Levemir.

For those unaware of units in insulin, 6 units that I had for breakfast would account for 60gs of carbohydrates personally to me today. Two whole slices of bread probably make up just under 30gs…

There was a lack of education for me back then, to say the least. Through running ultra challenges, aged 17 when I started, I learned so much about my own body and diabetes. How the food can boost levels, what kinds of food last longer or shorter. How fast my blood sugar levels can drop or change, what levels of insulin effect me the most during exercise. I tested my blood sugars regularly when running and noted my recordings, to educate myself.

At the time, the Doctor said stick to this amount of insulin per breakfast meal, lunch meal, evening meal… and we listened. I could have eaten a salad for dinner and injected 14 units for it, as though it were a very large, carb-filled, pizza!

And of course, my parents were given this education. This was what seemed the right solution to my health. In the best interest of every parent, who has the biggest fears brought on them when their child comes down unwell and then is diagnosed with a serious, life-long, disease, they are going to listen to every word the doctor says. They are going to do everything in their power to keep their child well. So I do look back and think WHAT THE HELL WAS I BEING TAUGHT FOR MY CONTROL!

Eventually I went on my own. And though this was not the safest, most ideal or health beneficial process, I kept on running big challenges to support people with diabetes and through it learned so much knowledge for my own control.

The most important part personally to me was the support I had from my parents and family. Even some close friends too. At every run you might see from my early days pre-Diathlete, you’ll find loads of people there cheering me on. That was what got me through the toughest times for my control.

Thanet run group

A warning came once, weirdly enough, from behind the grave evidently. I happened to see a Median one time, not because I wanted to, but I was staying with my cousins and aunt and they had booked a big group trip. So I tagged along. The spirit that came through, according to the Median anyway, had a message: look after your body.

My next A1C result was up in the 8s.

6 months later, it was 7.8. I recall the Doctor saying “why is your control poor?” in response to my A1C result.

A part of me fancied saying “why is your nose bleeding?” and then biffing him one. Rest assured, I behaved for once. I decided that I didn’t want to see this chap any more and re-joined my clinic. I had been 2 years without any real medical professionals support.

After completing the 30/30 challenge my A1C was at 8.0%. 3 months later it was 7.0%. 3 months after that 6.8% and then 6.7%. Unfortunately I have just had an appointment and it has climbed to 7.4%, which is disappointing.

However, I ran 7 marathons in 7 days 2 months back, toured the USA and have toured Europe. So a lot of travels, meals out (that I may not have understood exactly what was in them all!) and also a problem where my insulin in the USA went bad. So there are some excuses and I believe that I will be back on track soon. I feel that my knowledge for control, not only in sports but in general, is high standard. That is a confident statement and good… you need to be confident about your own control. I bet you all my next A1C is within the 6s and soon enough 6.5 or below!

In running marathons levels can go all over the place, especially back to back marathons to the extreme of 7 in a row, or 30… but two things: firstly I have 43 challenges worth of experience to date, I’m well capped to succeed in that respect. Secondly, I have a very supportive family and for that reason in diabetes, I cannot fail.

My message to parents out there with children who live with type 1 diabetes, just be there. That is your duty as a parent, diabetes or not. By being there for your child, of course with diabetes it brings fears, it brings pressure and worries to the core. But you are the rock. I feel in the present day carbohydrate counting is taught, better access to resources are available in the UK (and countries such as USA, around Europe, Australia and New Zealand) and developments in technology are coming through all of the time. Be strong and keep positive and your child will follow in your footsteps. Anything from there, as I hope to have proven in my accomplishments to date, is possible in life with diabetes.

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The Diabetes Flame

“It was a moment in my life which represented the light out from the darkness. Initially diabetes was something I viewed as a negative but over the years it became every bit a positive.”

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The ‘Olympic Bus’ paraded us around the streets of Thanet, in Kent. It wasn’t my home area but I knew the streets well, with my family living there. This was no ordinary day in Thanet… there were thousands and thousands of people out and about, united with Union Jack flags proudly waving in an air of excitement. The London 2012 Olympic Torch was coming to town…

In having the honour of being an Olympic Torch Bearer that day, it was as though I’d woken up and switched places with Prince Harry. I may have even pulled off the Royal Wave from my bus window to the cheering subjects lining the streets!

Sat next to a 4 time Olympian, former swimmer Karen Pickering, it was an incredible experience. There was this giant smile that I couldn’t help but beam from my face all day long. The bus dropped us off individually at our destined drop-points, where soon enough the Olympic Flame would arrive for our moments to remember.

On my Stop, the bus doors opened. I was handed my shining Golden Torch, which had 8000 holes in the design to represent each Torchbearer selected across the UK. There was a moment when I paused, almost in shock, before exiting the bus. I could not believe how many people were cheering for me. The organiser on the bus had to give me a polite shove to get off.

Dropped off 10 minutes in advance, there was time for me to address the public! Posing for photographs – even signing an autograph at one point! My family and some friends were there to support. They had told us not to let go of the Torch at any point, nor let any person get a firm hold on it. Quite rightly, there weren’t any replacements made! However, I had to bend the rules on one moment. A chap in a wheelchair and his family asked for a photo, so I welcomed him to my street – which at that moment was more or less mine, with the crowds being on the pavements behind the barriers – and let him have a firm hold.

It is hard to describe the feeling. Nerves has never really been a thing I get, although I guess an element of nerves was there. The best description is happy. I just felt happy all day long. It is difficult to say what was going on with my diabetes control in the moment – for I didn’t really, as irresponsible as it may sound, have the chance to fully concentrate on it. Before boarding the bus I had a blood glucose check and saw that things were running smoothly, after that it was a case of screw diabetes for a bit I am going to enjoy this!

The Torchbearer before me arrived to my scene, as we met and high fived. He then lowered his Torch and I met his with mine, as we posed for a photograph. And then it was my turn to carry the Olympic Flame – a once in a life-time opportunity and moment to embrace.

I didn’t quite know what to do, so I waved at every person I saw – and there was a lot of them. With some emotion, I punched the air and shouted out “come on!”

The Torch wasn’t heavy, it felt light at the bottom, yet, had some weight gathered at the top – where the gas cylinder was placed. This meant it was best to keep two hands on it if possible, yet, most of the time my spare hand was occupied waving at people. I used hair products back then, which I’m more about the wild-look these days… so at the time, maybe there was a flammable risk if that Torch shook too much!

The Torch Relay and being able to participate in it was incredible. It made me proud of my country and proud of what I had previously achieved. And that was the main reason I was there… I had achieved things in my life and the reason behind it all was through living with type 1 diabetes.

In the beginning with diabetes it was not easy. I never really shared any emotion to it, I just bottled up some negative feelings and fears. This made it more challenging for my parents as well, for I was just a young child when diagnosed. There wasn’t ever any talk of ‘why me’ which is positive, yet, you do feel that to begin with. This was something I bottled up and never let out in my early years – I think it is important for people to not bottle emotions and be more expressive, even if just to a parent. Some name callings took place during my early years with diabetes, not from just one individual but multiple. Once ‘diabetes’ was used as a method of cussing me, that was it. I couldn’t contain the anger – there was a few right hooks exchanged to say the least.

And although this may be something you could look at and say, good for you. Something which could be viewed as standing my own ground, it is also something I look back at and think there was a reason for the reactions. At the time, diabetes was not something I accepted in my life.

It took time to build that acceptance as a boy. A good few years among the changes of primary school to secondary school and settling in. Once I accepted my diabetes then it is fair to say I found the world in a whole new light. I enjoyed life. I realised I had the ability to do anything, I could play football, go out with friends, even get away with the odd treat in meals. Diabetes could never stop me from fulfilling my dreams. It sure takes daily responsibilities and isn’t something you always ‘enjoy’ in doing what you have to do for control, but the fact is we can take control. For that reason, I feel I am fortunate.

My diagnosis led me on a path in life. It led me to become ‘DiAthlete’ which is still growing and I fully believe my future is now in. It led me toward meeting so many brilliant people in similar situations, it led me to be able to in some ways help and lead them – sharing motivation. It led me to see many places in the world and opened up a door of adventure. So I mean it when I say, if I was not diagnosed with type 1 diabetes in my life I would not have lived much of a life at all.

This may need to be statistically proved, but I do believe that my London 2012 Olympic Torch is the most held from all of them in the games – I have brought it to many events in the years to follow, even took it back across the UK in my 30/30 challenge last year! The way I see it, my Olympic Torch is one for diabetes – a symbol that suggests by keeping positive with your diabetes you can achieve anything you set your mind to. Never give in.

World Diabetes Day

Friday 14th November 2014 is World Diabetes Day #WDD

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Put the WORLD back in World Diabetes Day

#INSULIN4ALL

Proud to be supporting this campaign for World Diabetes Day during Diabetes Awareness Month. Every person deserves a chance at life in my view; in living with diabetes, every person should have access to insulin in order to take that chance.

Full respect to T1International and The Pendsey Trust for uniting the world and standing up where it counts!

It is 2014. This means that 92 years ago, I believe, Dr Frederick Banting founded the discovery of insulin, in being able to inject the hormone into the body. He’s finding changed the world for the good, meaning that being diagnosed with diabetes was no longer a death sentence. With insulin, we can live! For that reason, come the eve of the 14th I shall toast a beer in Dr Fred’s honour. However, 92 years after the discovery of insulin… why in the current day are there so many areas of the world where human-beings with diabetes struggle for access to it!!!???

Forget any recent media talk of ‘a cure‘ – a cure is already as close as out there, in my opinion; I have insulin access and the education and experience to know how to take control! Sure type 1 diabetes management on a daily basis is very challenging, but I can get by. I can get by and run the length of the United Kingdom in 30 days in the process! I can get by and run 29 miles in 3 hours and 1 minute! I can get by and achieve anything I set my mind to do, diabetes adds to the challenge but also to the motivation. The essential reason I can do all that I can, is because I have access to the resources I need for my health. I believe EVERY person with diabetes should have that same opportunity too, before we can talk anything regarding a cure that isn’t here yet.

The biggest positive with diabetes for me is all the people in the world I have met with it. That is not a good thing in the sense they each have or are affected by diabetes, but in terms of the community we have – we are an army. We are a force. A lot of the wrongs in the world, in my opinion, comes down to money. As a global community in diabetes, we can rise above these challenges we face by uniting together in all regions of the Earth; we ARE the driving factors toward making a change so that our DiA-brothers and DiA-sisters, wherever in the world, can live life to the fullest too.

A lot of people often ask me What is next? In terms of my DiAthlete adventures. At this point there are no guarantees as to what next for me, but know this, I INTEND TO RUN AROUND THE WORLD. I intend to do this in 80 ‘blue circle’ marathons, hosting 80 diabetes community events and recording one almighty and truthful diabetes global documentary. With a team of DiA-legends involved, possibly you, we just need to get the sponsorship… and then make a big change to the world.

I always fulfil my intentions!

Happy World Diabetes Day everyone, in celebration of insulin. May one day, soon, we each have simple access to it, with the education and support required to live healthy and live our DiA-lives to the fullest. Together let’s fight this battle.

My sincerest thanks to both Ana and Jenn for supporting. I owe you both a beverage!

Serbian Tennis Sensation, World No.5 in the Rankings, Ana Ivanovic showing support for the diabetes cause on World Diabetes Day!!! #Insulin4All

Professional Pool player from the United States, Jennifer Barretta, showing her support for World Diabetes Day! #Insulin4All

Put the WORLD back in World Diabetes Day. See the Campaign by clicking right here!

Insulin4all

Diabetes Abroad!

There’s been plenty of travels for me throughout this year and I’ve LOVED IT. More please. On my travels I have experienced a diverse range of cultures, which brings a diverse selection of food. A great part of life is to eat, in my view, we have to eat in order to survive – it doesn’t take a genius to figure that out. And in being someone who likes to enjoy life, I enjoy eating! In living with type 1 diabetes, however, there is that issue of WHAT EXACTLY AM I EATING!!?

We need to know what goes in our body in order to counteract it and take control, having the correct insulin intake for both the meal and our bodies. With diabetes we are continuously making key decisions on a daily basis and finding the right formula for our health.

I’ve recently returned from a Euro Trip, this was no DiA-running adventure, just a calm little break – kind of. In the space of 11 days we ventured to Munich, Graz (Austria), Maribor and Ljubljana (Slovenia) and Venice. Before that I had recently returned from the U.S.A tour, which included 7 marathons in 7 days. The challenge there gives me a good excuse to eat more… you tend to lose weight running 180+ miles! In the States I went to New York City, Long Island, Minneapolis, Miami, San Diego and San Francisco. Earlier in the year I also have been to a few places such as Bilbao in Spain and Val D’isere, France.

As someone who is on MDI (Multiple Daily Injections) I need to inject the right amount for carbohydrates in my meals. In order to do this, you need to know (or at least have an idea) of what is in the meal. This is a challenge, for example, when the menu you read is in another language and you aren’t exactly sure what you are getting…

German MenuOr if there is a 4 course set meal being dished out and the waiter doesn’t speak your language very well. This happened in Slovenia. I was fortunate to be there, coincidently, for their week of restaurants. So it was a value meal at a good price with a choice of either the Meat or the Fish menu. Course by course came out and to this day I still do not know what the hell I ate!

Put it this way, the one thing I was aware about was the dessert. It was a vanilla., chocolate and… vegetables dish.

The mistake I made was guessing that four courses would be a lot to eat and injecting 8 units – anticipating 2 units per plate. From what I gathered, there was not much carbohydrates in the meal. This meant I dug into the bread.

The food in Slovenia, apart from maybe one or two of those dishes, was excellent though! In Ljubljana we had this roast plate and it was a dream. I loved it. Meat, this cabbage dressing, potatoes in a special style… I loved it. It was a bit easier to figure out the carbohydrate intake with this one, but again, not exactly certain. Sometimes the best thing to do is to eat first and then inject the insulin. My view is to normally inject shortly beforehand, I like that insulin to be raring to go. But if unsure, I guess there is not much harm in being patient and seeing what the meal is – and in addition, how much of it you eat (in case you leave anything… which won’t happen with me.)

Slovenian Food

You might inject in advance and then fancy another slice of bread. You might later opt for the dessert. In travelling or eating out, injecting after a meal is probably the more efficient method to know what to inject better.

This brings me to America though. I recall Tyler Perez, a 15 year old in Miami, and his mother Jamie. Jamie explained how the insulin takes longer to work for Tyler’s body – everyone has a different body, and so it would be difficult for Tyler to take his insulin after the meal. In a situation of eating like I did in Slovenia, he would have to either select a certain meal and hope to understand what is in it, or take a guess.

Other aspects to take into consideration are beers. I loved Munich. The beers were great! In my best German I ordered one large beer and one small one for Lorea and I. We were expecting a pint and a half pint.

I received a litre glass and Lorea had a pint! There was no complaints by me…

But in terms of injecting. If this beer was with my meal, I might have anticipated for a pint of beer with the meal and injected in advance with that… only for a litre of beer to show up.

Diathlete Munich

 

With diabetes I know and to an extent understand that people prefer to stick to more strict diets. Low carbohydrate dieting for example. In general, yeah, a diet like that works well. The less carbohydrates the less rapid you blood sugar levels are going to increase. And if you consider even when getting your insulin spot on, if it is a high carbohydrate meal or a sugary treat, levels will temporarily spike before coming back to control again. This several times a day is not going to do your long term control many favours. So the low carb routine can be a great help for control in that respect.

In my view though, I believe you can eat the meals you want whilst living with diabetes – and that absolutely includes trying new things. Yes, you have to be much more responsible than the average person, but there is always a way of figuring things out – such as when is the best time for you to inject your insulin, before or after, How long before a meal. What are you blood sugars pre meal to depict whether it is the right idea to have that extra bread on the side, or dessert afterwards.

In time with diabetes you learn your body better and in my view that makes you much stronger in taking control. Being able to test your blood sugar regularly is a key factor toward understanding and developing your experience.

Eat well!

Flying with Diabetes Event 2014

Diathlete (1)

It was a pleasure to be back speaking at the Flying with Diabetes day event at Duxford Imperial War museum again this year. Really enjoyed it last year and after a busy year of travels, it was great to be back and share my experiences.

The event included numerous other speakers, each with type 1, and in being the last person to talk on the day, it was great for me to be there and hear them all beforehand. Supporting JDRF UK the event was set up by the host, a pilot with type 1 and a brilliant role model for anybody – Douglas Cairns.

Dougie began the speaking and shared his story, which in the face of discrimination to an extent, is inspiring for anyone. He’s dream was always in the air, becoming an RAF pilot. After diagnosis to type 1 diabetes, he had to lose his flying license. Today, Douglas has a flying license back and has gone on to set numerous world speed records in the sky. A sincere congratulations is in order to the man, this event marked the fact that he has now raised over £100,000 for JDRF in his life! Well done Dougie!

Following on from Douglas was Kyle Rose. I first met Kyle when we were both speaking at this same event a year ago. Since then, everywhere I seem to go in the world I seem to bump into the man! He is my official DiA-stalker! It is always a pleasure to see him and his achievements are a great motivation to all with diabetes. Kyle was a founding member of Team Type 1 and a professional cyclist. He is a French, American – which would be just the worst breed from an English perspective.. but he is also English as well, so that makes up for it ;) I’ve seen Kyle in 3 different continents in the space of the year – all linked to diabetes of course, and I wonder how many continents we can catch up with in the future!

Kyle where from

Malcolm Knowles gave a brilliant talk that I really enjoyed. Similar to Douglas, Malcolm is a pilot with diabetes. He’s story is an incredible one really. He realised his dream fairly late, that he wanted to be a pilot. He had great support from his Wife as they sold their home to make this dream happen. Very shortly after becoming a professional pilot, he got struck with the symptoms and diagnosis of type 1 diabetes. Life can throw the worst at you sometimes! But his story is very uplifting, he must have HATED diabetes! In the face of it, Malcolm discovered the likes of Douglas and is once again a professional pilot – showing diabetes can’t stop him.

Claire Williams and Dean Horridge spoke afterwards about their adventures of climbing Mount Kilimanjaro, with Claire also sharing her type 1 early life story too. It was great to hear about how both Claire maintained a positive attitude during times when diabetes resources were not remotely the progressions they are today and the changes she has seen through the 80s, 90s, naughties and present day. And their group journey of Kilimanjaro is an example of how by working together in our diabetes community, we can achieve anything.

Karl Beetson is another pilot and the youngest one of the group of pilots. Similar to Malcolm, once he had his path set out to become a pilot, diabetes appeared to take that dream away. Working with Douglas, he has a flying license back and has gone on to set speed records with many exciting adventures in the air! Another fine demonstration that in living with type 1 diabetes, you can still fulfil your dreams.

Jo Brodie then spoke of the progress in research in recent years with JDRF and shared an insight into the history of research developments. The past 100 years has seen some incredible changes, which is why many like myself are able to survive and thrive in life today.

And then I had my turn at the bat. The message from each of these talks, albeit in various different circumstances with cyclists, pilots, mounting hikers and myself… maybe under the extreme nutcase category, is that whatever we enjoyed doing or whatever negative came from diagnosis to diabetes, we can still beat it. We can still go out there and do the things we love. We can set any record and we can achieve any dream. To be honest these guys speaking before me had already done the job in passing that message out there, so by my turn I just fancied reeling out the jokes! But I honestly meant it when I said “running would be boring if I did not have diabetes.”

For me personally, to be able to have opportunities to share my stories, from being out and about in the USA to running the length of the UK covering 900 miles in 30 days, it makes every stride I ran worthwhile. If there’s a person with diabetes in the audience listening and getting the message, that’s why I run really. I love being able to pass on some DiAvation! Every success I have had in life has come about because of diabetes, because I have that added hunger to show that this added challenge in life is not going to beat me – I can and will beat any challenge.

Here’s a clip from the talk:

‘The Cure…’

Recent headlines in the UK suggested that those with type 1 diabetes are soon to be cured…

It was read that Prof Doug Melton has found the correct formula to go on and cure this autoimmune disease.

I applaud the work of Dr Melton, who I’ve read has two children with type 1 diabetes and so would have a heart full-on into his work, and his Harvard Stem-Cell Researchers, but in terms of the media and perhaps organisations pushing this out there as a giant story… be serious. How about complete the cure first and then let us all know about it? The reason for this view is that I acknowledge there has been a positive break through here, I understand that this is something worth further investments and developments on, but I have lived around 15 years with type 1 diabetes and that’s why I feel you shouldn’t be telling people, especially young children and their parents, ‘a cure is coming very soon‘ before a cure is here.

For me I have lived to regard myself as very fortunate.

Diabetes has brought around many experiences; I’ve lived and I’ve learned, I’ve put trial and error into practice more times than I can count, I’ve been knocked down and hit the ground a few times – but I have always returned to my feet to keep on moving forward. And when on those feet of mine I’ve had adventures of a life-time, time and time again with epic successes, I’ve met many of the greatest people I’ll ever meet, all over the world, and I’ve really lived life to the fullest because of it all.

IOW poster

It is from all of those experiences that I have come to the conclusion that I am fortunate, as my eyes have been opened to the world.

For all those with high hopes for a very soon cure, which I expect is in the greater population parents (type 3s) with young children living with type 1, my message to you is to keep that hope alive always, for one day it will come, but do not expect this to be any time too soon. It is not coming next year nor the year after and this is something we have to live with. That is the negative part. But what I am hear to say is that you (or your child if a type 3 parent reader) can still achieve any dream, overcome any challenge and accomplish any objective. I know of many who have and can tell you from my own experiences what is possible whilst living with type 1 diabetes:

Anything, and more.

For me my talk of a cure refers back to 1922 in Toronto, Canada, where a 14 year old boy called Leonard was chosen as the first person to receive insulin, which a year earlier Dr Frederick Banting had started working in a laboratory on developing. By 1923 this finding went global.

You see, this is an example of a cure. Before then people would simply just die from diagnosis to diabetes. This gave people with diabetes the tool to live life. Findings since then of course have greatly enhanced health with the condition – even in my time with diabetes big strides forward in care have been made. With the access to insulin and education in lifestyle with diabetes, we ARE able to live our lives to the full.

My point is that while there is talk of a cure in the news shouldn’t it also be mentioned that in over 90 years after insulin was founded, there are still people in this world without access to it?

I am fortunate, I was born in the UK and while there are always improvements to be made and whilst living with diabetes brings its daily challenges around, I believe I live well through access to the essentials that I need. Consider people living say in areas of Rwanda or Uganda, or people with low incomes living in areas of India for example. A friend of mine out there in the heart of it once passed on a statistic that in one particular location 85% of childhood diagnosis’ to type 1 do not live to see their 25th birthday. That’s the truth, diagnosis to type 1 diabetes is still fatal in many areas. In 2014, coming up to 2015 soon enough, I do not believe this should still be the case, but it is!

A cure would be a fantastic thing to enter this world, of course! It would be the biggest step forward since the discovery of insulin – but, like the discovery of insulin, I do not believe it should be mentioned until it has been discovered. Children, most particularly, do not need to be living thinking I am going to be cured, hurry up and cure me! They need to be educated into knowing their body, into knowing that with the right attitude and responsibility every day they can take control and, ultimately, they need to be told that they can achieve in any dream in life whilst living with this condition. And one day when a cure does come, we can move forward from there.

I believe in my lifetime (or to be safe, a person my age and less challenge-crazed’s life-time), one way or another, a cure will be found – and I don’t think it will be too great a time in truth. There is no way any person could possibly say how long exactly until that day comes around and years on from that day the results remain positive; however, I would ask one question from there…

So when would that ‘cure’ then be available to every person living with diabetes in the world? For if it has taken 90 years and people still do not have full access to insulin, or at least the supplies and education they need, so we must be talking a long time and fight to get a cure all around the world after one gets found in the first place.

For me personally I do not live my life feeling I need a cure for myself, I don’t even consider it at all; give me the resources I require for my diabetes management and I’ll live my life. If a cure was found tomorrow I would happily wait until the people less fortunate in the world, who need the cure more than I do, receive that exact treatment first.

The problem we face in the world is that you may well find I’d be waiting a very long time…

The Diabetes Research Institute

DRI pic

When in Miami during the DiAthlete USA Tour last month I was given a tour of the Diabetes Research Institute (DRI). It was a great experience for me. Turning up there was like a secret agent, as this ‘hidden’ laboratory head-quarters was like something out of the movies.

It was really interesting to see the work these guys are doing behind closed doors. Different experiments constantly taking place, tracking islets and placing them in various potential locations of the body to find reactions. A recent study showed potential positive developments within inserting islets into the eye.

In another laboratory area one Researcher even told how they once cured a monkey!

What I admired about the place were the people behind the experiments and studies. As they all seemed to be linked in someway to type 1 diabetes. Researchers with children living with type 1, some with parents who had it, and the likes of Gary Kleiman and Della Matheson at the top of the tree living with it themselves for many years. That is what counts for me, having people around whose true passion it is to make a difference. That is why with diabetes I have met many great people, as they’ve all shared a determination and desire to support others with diabetes and improve things. And when I saw this at the DRI, I believed in it. A cure will come, it may be Dr Melton who finds it with his results, it may be the guys from the DRI, it may even be elsewhere, but I do believe in the people who really believe in the cause and that was what I witnessed at the DRI.

It would be hard to blame people, if a cure was around, if they were to take the cure and never look back at diabetes again. I suppose that would be the case for many. Yet, I look at the ‘DOC’ (diabetes online community) and the communities that have been brought together by this disease right around the world and I see something with more power than anyone involved has realised. And that would be sad to see dismissed. I do not believe it should or would be. We are a force together and that force could be the impact the world needs to improve things ALL around the world – to every person who has type 1 diabetes.

But at present, let’s talk no more of a cure until that day does come. For now there are people not receiving insulin in the world very easily, there are people still being discriminated against and there are still many people needing the education to take control.

So whilst the professionals do their good work behind the laboratory doors, let’s focus on the issues that need changing in the present day. Let’s do our part to ensure everybody in our diabetes family gets the opportunity to thrive.

We are all born with a fire inside of us and sometimes it takes something like diabetes to come along and ignite it, we all deserve the chance to learn how to move forward so that we can carry our flame in the right direction…

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The Manhattan Marathons

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Between 5th of September until 8th October I was away on the Diathlete USA Tour. This was a series which entailed 11 flights, 4 U.S States, meeting and speaking to many diabetes communities and numerous challenges – the main one being running the equal to 7 marathons in 7 days! Proudly sponsored by Dexcom, where I used their Dexcom G4 CGM device throughout, the tour and challenges were in aid of the type 1 diabetes global initiative of Marjorie’s Fund.

LOGO_MARJORIES_FUND1

In this blog I will be speaking about the extreme running challenge that took place!

THE MANHATTAN MARATHONS

On one hand the prospects of running 7 marathons in 7 days is huge! Yet, some might have expected me to be fine given the 30/30 challenge last year. Personally my feeling was that this was going to be the toughest challenge I had faced to date. The reason being that I was far, far away from home in a location I had never been before and to add to it, unfortunately, I had to spend my summer season working in order to get by. I found myself sleeping in both a tent in a field and in a boarding school for the space of the two months build up. It was difficult to get a concrete training schedule going and diet plan together for my preparations.

I came into it with an element of doubt, which has never been the case before. I was asking myself, am I ready? Can I do it? Never in doubt, however, was my ability to control my diabetes the best I could for the endurance. Experience was greatly in my favour and I was relying on that for both control in my diabetes and success in physically running the marathons.

The pre run plan in terms of control was to lower my background insulin (Basal) from 14 units of Levemir in the morning of my split dosage to 4 units. I would time the evening before’s injection, which again is on an average day 14 units, so that come the morning there would be a small but minimal percentage of that evening dosage left in my system. At 10pm the evening beforehand I would inject and at 9.30am I would begin running.

It did not quite begin that way, unfortunately! We had a bit of a rush to make the start point on time and then waiting around to get all the Marjorie’s Fund team at the start line and have all the pieces I needed in my backpack for the journey, it went on longer than we wished! So it turned out to be a 10.30am start!

I am the kind of guy who would show up late to my own funeral, it has to be said…

Blood sugar wise I started a little bit higher than I wanted, even though to begin runs I tend to prefer to begin a little more on the high side as the endurance will gradually decrease my blood sugar levels in keeping up the same pace continuously when running. It was 16mmol/ls as my Dexcom G4 reflected attached to me. (this is around 270 dl/ml I believe). My preference would have been to start with a level around 12mmol/ls – so around 200dl/ml.

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In using a CGM (continuing glucose monitor) for the first time, having previously always carried my blood testing meter with me on challenges and stopped to test with it, the advantages were clear to see from the off. It is effectively your diabetes control in view with you 24/7. I set my ‘HYPO’ alarm to start beeping and vibrating when my levels dropped below 5.0mmol/ls as even though to be 5.0 is a good level on your average day, I could be made aware of when my blood sugars were dropping lower than they needed to be and give a boost to prevent the hypoglycaemia from taking place.

It was effective – for I only suffered 2 hypo levels during the runs, and they both came on the last day!

The first day was an enjoyable start. The weather was quite hot and I was joined by Team Marjorie’s Fund to see me off out of New York City, leaving the Cure Thrift Shop at E 12th Street. It is a great City where you just get a buzz from being there in the Manhattan area. We crossed the Williamsburg Bridge and I got a little excited to see a glimpse of the Statue of Liberty in the far background, the first time I’ve ever seen it. Dr Jason Baker, a fellow type 1 and founder of Marjorie’s Fund, was on his bike along with Joy and Brian Pape of the board, and Zoe Treeson was running beside me. After the bridge it was time to share our farewells and I was on my own, running through locations I had never encountered before.

Brooklyn was across the bridge and it was an interesting stretch along Broadway. The further away from Manhattan I ventured, the more run down it seemed to get. There was an area which was a complete ghetto, to be truthful, glass all over the floor, smashed windows, burned out vehicles… and I was aware that it is legal for people to have guns. There I was in my Union Jack flag wrapped around me, trotting through it…

I run with the flag because it is my ‘good luck’ charm!

I found that it did not take too long for my levels to drop. Running in a fair bit of heat with the weight of my backpack on me – 7 days worth of clothing, gels, a few drinks, diabetes essentials such as insulin, a laptop and wash stuff makes a fair load! My Dexcom sent the alarm that I had fallen from the highs to begin with to below 5.0 mmol/ls and had the helpful tool of showing two arrows facing downwards indicating that my levels were rapidly decreasing.

Having been alerted, I whipped out my gels from my backpack in true action style. There is a side pocket which my gels were fitted to. I reached to the side and grabbed a gel, bit the lid off and consumed the glucose! After taking the gels the plan was to keep moving forward but I decided it was best to walk the next mile to take it easier and not burn so much energy for a moment, whilst bumping the levels back up. This was effective as despite the near hypo, the low was prevented and I kept moving forward and making progress.

That’s what life is all about in my view, no matter what comes at you be that something like diabetes, you take it, do what you have to do and ultimately keep on moving forward.

Day 1 went a bit wrong after a positive start. When running again I found myself making a wrong turn and heading down Howard Beach. This mistake went on for several miles before I realised there was a river to my left side which was not on my map! As my sugars lowered I stopped for lunch. And then found Sunrise Highway – the road I would be on for the next few days.

Once Day One had finished I began to get that challenge vibe back again. After leaving Rockville in the morning of Day 2, this time on time for once at 9.30am, I made great progress hitting a 5 and a half mile per hour pace with the backpack on. It was a long stretch onto Bayshore. I feel that once I made it to the next town along, Freeport, in really good time, the confidence just came flurrying through me again. Why did I have those pre challenge doubts!? I had a long way to go but always knew I could do it and diabetes absolutely was never, never going to hold me back.

rockville

Sunrise Highway was interesting as for the main part there was ‘sidewalks’ for me to run along, yet, every now and then they just disappeared and I found myself running toe to wheel with traffic – and I don’t mean to be critical to my Yankee friends across the pond, but their driving is insane!

Horns constantly beeping and not at me, at each vehicle they come across. This is quite distracting when you are running about! To add to it, every block more or less has a crossing, which is a runner’s nightmare. Constantly having to halt progress to wait for the signal to cross the street. I noticed that even when the signal says you can cross, cars still make a right turn anyway!

And that was the other confusing part, in the UK we drive on the left and so when crossing roads, I didn’t know where to look!

There were periods where I felt a little drained for energy, as if I just wanted to have a little rest and sit down and then continue. At these points I just slowed right down to around a 4 mile per hour pace and pushed on… but I’d soon get bored and up the pace once again.

It was a lonely run out there on my own. My one contact with human life was a car driving past, acknowledging my Union Jack flag and shouting from the window: “Go Home Australia!!!”

It did make me chuckle a bit, silly Yank…

On the plane a woman called me a ‘Limey’ which was an interesting name. It dates back to the years of British America where the limes were used in Sailor’s diet in order to prevent scurvy. I wasn’t feeling the love out there to begin with…

My control was ranging pretty well. I consumed carbohydrates in the forms of the gels and drinks ranging from 30-40gs per hour and it seemed to work very stable. In fact, my best control for the whole tour over 6 weeks was during the runs!

Sunrise Highway was a mental torture – I spent the whole day on it! My hotel that night, Bay Shore Inn, was as rough as a Sunday morning in Blackpool. The area seemed to be the kind of place where if you did offend someone, the chances of being shot were fairly high. The walls were grotty and I dared not sleep inside my covers of the hotel bed.

To begin Day 3 I guess I just wanted to hit the road and get out of there as quickly as possible! So I did just that, wrapped my flag around me, checked out… and then realised I had packed my shorts away and in fact was just out in my boxers.

A good thing I brought my flag!

On Day 3 I discovered GATORAIDE – and blimey my levels shot up! The alarm had been beeping to signal the levels were crashing and so to prevent a hypo I found a shop and purchased this blue drink or glucose. Within the next hour I rocketed up to a 17 mmol/l level. I hate being too high as it makes me feel so awkward in my body! And to be running a marathon, it makes it even more challenging to keep moving and feeling as good as possible.

In running high, I shot 2 units of Novorapid in to reduce the levels, which as my Dexcom was indicating, were only growing higher!

Within the next hour I crashed back down. The biggest mistake was that I injected in my leg I think, as my legs are constantly moving when running and so the quick acting insulin is forced into the system even quicker.

I absolutely crashed to 4 mmol/ls (70dl/ml) and had to resume the Gator treatment!

Eventually things balanced out as I finished the day at Medford and I was so pleased to make the finish there and get that day done with! I was also finally off of Sunrise Highway and heading North to make the loop where eventually I would, hopefully, arrive back in Manhattan. Sandy from Marjorie’s Fund happened to be working in Long Island and she was able to support by taking a few of my dirty tops away and lessening the load on my back to run with.

Day 4 was the hottest day for weather during the run. It was a complicated route too, heading north but going off-road and making the miles up before winding round into Port Jefferson. I sweated buckets out there with a bag on my back and this increased the speed of which my blood sugar levels decreased. I was consuming carbohydrates and gels on a half an hour basis. I’ve noticed the Americans on average did not tend to use the term ‘half an hour’ and so I’d like to explain this means 30 minutes…

I kept a good pace going toward the end of the run, which I was delighted with. This was mainly because this girl was out going for a run and she overtook me along the road as I was trotting along. The competitive nature in me thought… oh no you did not just take me!

So I kept up at her pace, and she was going well in the heat! She also did not have a large backpack and I doubt she had ran for the past 3 and a half days solid, but nonetheless, it was game on!

We were running along a road called ‘Jayne’ Road. This reminded me of Auntie Jayne back home…

And then at the end of this seemingly never-ending road, I returned the favour and overtook the girl – Union Jack waving about as I passed…

Once this road had ended, I was in the home stretch into Port Jefferson. This was a place I really loved seeing – a seaside town with a great atmosphere to it.

port jeff

The following day, Day 5, was a very, very long one. It took me on a scenic route, which I enjoyed but brought about many hills and the weather was still very warm. My camera broke as I picked up a great pace, probably 10 miles per hour when heading downhill, and the camera shot out its pouch and smashed on the floor.

I decided to slow the hell down from there…

route 6

The roads were more dangerous on this Northern Blvd, no sidewalks at all. When they did show up, a few meters later they disappeared again. WHAT IS THE POINT!!! But in the USA everything is bigger in size and the roads were particularly in that category. This helped me out (although the vehicles are much bigger too).

I saw a dead Racoon on the road side at one point. Wow, never seen one of those before and they look really freaky!

Day 5 just seemed to go on and on for ages. It was more than a Marathon that I ran in distance that day and I did feel the impact of that. The most dangerous part was toward the end as it was a thinner sized main road, with no sidewalk and no lay-by. Cars were speeding by and I was restricted to tuck myself in as far as possible to avoid any contact. When there was a moment with no traffic brushing past, I sprinted to get out of that area faster and make an area where, thankfully, there was sidewalk once again. From there I made it to Centerport and the views from where I was staying were spectacular.

Centerport

In the evening I was grateful to Nick from Dexcom in the Long Island area, who came and met me to take me for a meal. After we ate he drove to the local shops for me to pick up some more supplies for the next run.

Nick: “Cliff Bars are full of energy and carbs, some of those could be good?”

Gavin: “Yeah, that ought to keep me alive.”

We loaded up with a few cliff bars which contain 40gs of carbs per bar and he dropped me back, helping me to change the sensor for the first time. On my previous insertion with the sensor, when on my flight to New York I had a bleed. This caused no problem to the results of the Dexcom but I was concerned to see it. I am grateful to the DOC (Diabetes Online Community) as when I posted about my problem I was given plenty of reassurance. This time there was no bleed and there has not been another since, touch wood.

Day 6 was Day 6 and in my mathematical genius mind through living with diabetes, I knew that meant only 2 more runs of 7 were remaining. I took it nice and easy, wanting to save as much energy for the final day. It was another long stretch remaining for the majority along that Northern Blvd – again a scenic route with warm weather.

The part I enjoyed the most was arriving to a town called Roslyn. It was probably three quarters of the way there, to Bayside, and I was ahead of the times I had set myself – even though it was a challenge of endurance and I had all day! So I stopped for a late lunch in an appealing restaurant. The meal was fantastic. I did look around and see people dressed in suits and dresses on the other tables – there was me with a head scarf on, sweat all over, roughed up from living wild the past week.

Sod’em I’m as classy as I want to be…

I dug right in!

Bayside

Once I made it into Bayside I just wanted to get a good rest and get going again to complete the final day back into Manhattan.

The rest part was not achieved.

I could not sleep. This had been a problem on most nights but more so the last. I kept awaking at ridiculous times and feeling uncomfortable. In total I must have tallied around 2 hours of actual sleep before the alarm went to say GET THE HELL UP!

I got up and ran and ran and hit an incredible pace in the first few miles considering the week of marathons! Maybe a pace of around 6-7 mph. There was a problem though, a MAJOR problem…

Probably a little down to awaking absolutely gormlessly with the lack of sleep, I proceeded to inject my average morning dosage of 14 units of Levemir insulin into my system, as opposed to the 4 units I had lowered it to in order to counteract the endurance I was facing. I realised this during injecting and pulled the pen out of my leg having injected around 11 units of the dosage. FAR TOO MUCH!

From there I knew I was going to crash hypo and would need to consume as much carbohydrates as possible. In making a fantastic start in pace, it made me crash even quicker. I consumed the last of Cliff Bar and also another bar I had purchased which was 20gs, yet, still saw my levels go low when approaching Queens. It went down to 2.2mmol/s (around 40 dl/ml) and I had to keep focus. I had ran out of supplies when passing the Mets stadium and was on the lookout for a shop, which soon enough I found.

Soon after the levels began to drop lower once again, my Dexcom beeping away. I prevented the hypo on that occasion as I found a shop to buy a drink and boost myself, whilst walking for a bit. Once Manhattan and the New York City skyline was in view I felt re-energised in myself. I knew I was going to make it.

Brooklyn Bridge

Despite the skyline view, I had a long way to go still. I ran down from Queens beside the East River and headed for Brooklyn, where I would cross the Brooklyn Bridge. The rain absolutely hammered it down at this point but the views were spectacular! In progressing into New York City I took a loop which went from West New York to the East, before coming back in to the Cure Thrift Shop at E 12th Street. When in the City, partly worn down by the rainy weather too, I crashed to a second hypo of the day and challenge! But in having a short stretch remaining, decided to play my old tactics of changing the pace, sprint, jog, sprint, walk, to boost the levels up again by releasing glucose from the liver. And then, I met Dr Jason Baker and we sprinted in to the finish line to meet the supporting Marjorie’s Fund team and celebrate!

Finish

I believe in the team and their work. Marjorie’s Fund is a charity that support young adults in need with type 1 diabetes, across many locations of the world where people cannot get the support or supplies they need very easily at all in order to survive. Marjorie’s Fund helps support their needs and provide education for people to take control of their diabetes and thrive into adulthood.

Never doubt yourself! In completing this challenge of running 7 marathons in 7 days, I feel it shows what we are capable of given the supplies and education in control for our diabetes – and that is absolutely anything! This diagnosis cannot prevent you from fulfilling your dreams and I dream for a world where one day that is the case for all areas living with type 1 diabetes.

GG JB

DIATHLETE USA TOUR – PREVIEW

So upcoming is: 11 Flights, 7 back-to-back Marathon challenges, 6 U.S destinations and a series of diabetes community and speaking events!

It sounds a little bit like a Christmas song… (and a pear tree anyone..?)

Flying over to New York (via Amsterdam) on Friday (September 5th) the next 5 weeks is going to be extremely busy – and I am looking forward to it! Of course there has been a lot of planning, preparing, organising and daring to make this happen, with still a few more details to be confirmed as well, in this post I share how things are shaping up for the Diathlete USA Tour 2014!

Firstly I would like to say a big thank you to tour sponsors DEXCOM. Their support has made this all possible and as a result I will be trying out one of the latest break through’s in diabetes management, their Dexcom G4 Continuing Blood Glucose monitoring sensor (CGM), which traces my blood glucose levels as I travel and run. Having never used a CGM before, I’m excited about this opportunity. Dexcom have also adapted the device which previously only operated in mg/dl (milligrams per deciliter ) to suit me using mmol/L (millimole per liter). I appreciate that for in the UK it is most common to use mmol/Ls when managing your blood glucose levels, whereas the USA it is more common to use mg/dls.

…It is kind of like the fact that in the USA they drive on the right, in Britain they drive on the left.

We like to be different! And as far as the majority of the world is concerned… you drive on the wrong side of the road!

To help people’s understanding, here is a basic comparison of Mg/dl to Mmol/L levels:

Mg/Dl

Mmol/L

54 (hypo!)

3.0 (hypo!)

70

3.9

108 (spot on!)

6.0 (spot on!)

180

10.0

270 (hyper!)

15.0 (hyper!)

380 (way hyper!)

20.0 (way hyper!)

 

Where did the Idea for the ‘Manhattan Marathons’ challenge first come from?

Some point during 2013 I  became introduced to a charity named Marjorie’s Fund with a global type 1 diabetes initiative. I had succeeded in ‘the impossible’ or so I was told it was, in running the length of mainland United Kingdom in 30 days and my next venture was a trip to Australia, where I would become an IDF Young Leader in Diabetes representing the UK and would also embark on a ‘Diathlete Down Under‘ tour.  At that stage I had done a heck of a lot for charities in one year already! The 30/30 challenge was supporting Diabetes UK and JDRF UK, the Down Under Tour linked me with the International Diabetes Federation, I was fundraising for JDRF Australia and also spoke to Diabetes Australia at an event.

Supporting another charity, surely, was way out of the question!

But I looked at the initiative Marjorie’s Fund shared and to me it appealed in what their goals were. Many people with type 1 diabetes in the world are dying each year. Many are children. And it is preventable! It all comes down to the fact that in certain areas of the world the funds are not available. The resources are not provided. The education for control is not there. There is little care for the people with type 1 diabetes. There is much for discrimination. Ignorance comes into it, as a serious disease not being viewed seriously. It is not understood and there is a lack of awareness in many areas.

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Marjorie’s Fund helps in these areas of the world – ‘thriving not just surviving’ being their motto. They support children and adolescents diagnosed with type 1 diabetes to not only receive care and education, to not just survive into adulthood – but to thrive into good health, or as good health as possible to go on and live full lives – as people with diabetes should be able to do. As I do in being someone who has the resources such as insulin and education to keep control.

I had shared emails with Dr Jason Baker and even had a few chats on Skype. He was intrigued with what I had managed to accomplish as ‘the Diathlete’ and the challenges I had endured, I was intrigued by what his charity that he had founded was doing. Jason also lives with type 1 diabetes and by founding Marjorie’s Fund, he was following what was in his heart from his experiences and the people, such as Marjorie, he had met along the way. We shared a lot in common there and decided to plan for the future. It just so happened that Dr Baker and Sandy of Marjorie’s Fund had a booth at the IDF World Diabetes Congress in Melbourne, where I was.  We set up a meeting and discussed plans and from there… Manhattan Marathons was created.

Dr Baker and Gavin

Likewise to all my challenges, the routes I run tend to be completely random. I would run around Long Island! It worked out the distance would endure 7 marathons, therefore, we had a weeks-long challenge set up.

I caught up with Jason again in my hometown, he was over in London and I had an event on to introduce my latest challenge – it was great as we had Jason share his story, I invited the then Mayor of Bexley along, Sharon Massey, who done great things for diabetes in our local area and she spoke, along with daughter Tori, 14, who lives with type 1 diabetes too. And Paul Farrelly came along, who lives with type 1 diabetes and once cycled from Portsmouth to Istanbul in 30 days – and also once capsized a rowing boat in front of Sir Steve Redgrave, with me in the back…

Event pic

Training and Preparations

It has taken a lot of planning and organising. As previously mentioned, still with one or two possibilities to confirm too. It is a bit like Transfer Deadline Day, as I try and make some last minute deals happen, only without the bizarrely, unnecessary dramatic impact of Sky Sports News ‘HQ’…

Whilst going over to the USA I figured it is great to go and do a challenge for a week, but here is the thing, I have never been the the USA on my own before – I want to see it all!

My message to others is to never let diabetes stop you from living life to the full. Therefore, instead of just going to New York City and then around Long Island, I decided to push it on with a tour! Travel is sometimes a big concern, especially for parents with children who have type 1 diabetes – a big worry. So I would like to demonstrate that I live with diabetes and yet am very comfortable travelling around, even to the other side of the world! And I am gaining new experiences, meeting new people, enjoying life – whilst living with diabetes. The Diathlete Tour came about. It took some work, as the initiative is to support and inspire diabetes communities, raise awareness of Marjorie’s Fund and involve other people with diabetes as much as possible. I had a few contacts and have managed to establish a few more which I am grateful to a number of volunteers for! And so the final decision had been made to go to Minneapolis, Miami, San Diego and San Francisco for a series of events. It is an exciting schedule and I’ve never been to any of these places!

It has taken a lot of work to set this up. An example is my email inbox – over 100 emails this week so far alone. I’ve been up taking Skype calls past midnight, to even as late as 2am in the morning – the time zone difference not helping me. But it is all coming together!

In addition to that I have also put in serious time toward another major project that I hope comes to plan in the future. But you will have to wait a while to hear anything on that!

Through doing many events over the years and crazy challenges, I have gained some great skills to effectively make events such as this one successful – so I have confidence going forward. If there has been a problem though, it has been the fact that my time has been consumed up organising everything – and not training as well as I needed to.

I also have to try and earn something of a living whilst committing to these things. That is the difficult part. I do these things because it is in my heart, I want to do them, I want to support people with diabetes as much as I can. There is nothing more rewarding than being at events speaking your story to others affected by diabetes, particularly children with type 1, and being able to pass on some inspiration to them. But it means I can never commit to a full-time job, as I don’t know where I’ll be next week!

So over the summer period, aside from all the organising, I had to get some random work. I spent a week sleeping in a tent working at a festival. And it rains a lot in England. The showers were cold too… I then spent 6 weeks living in a boarding school to work as an activity leader with foreign students. It was an enjoyable job, to an extent, I met great people who I worked with and kids are always entertaining. But it was more or less 24/7 work given that I was living on campus. This all meant that my training time was shredded right down.

But you gotta do what you gotta do.

So in all honesty, I am not coming into this Manhattan Marathons challenge of running 7 marathons in 7 days in the shape of my life – by any means! I also suffered an injury whilst playing football working in the summer. My Achilles heel if you like is my left ankle. I sprained it whilst working. So I had to take time strengthening it back up. It caused me some bother during the 30/30 challenge on the first week, but fortunately the Edinburgh group arranged a masseuse to check me over when needed it the most and the exercises I learned, which recovered and saved my 30/30 challenge, I’ve again put into practice here. 5 years back I tore the ligaments, so it is my one weak area. Yet, with the right exercises, as proven in the past, I can strengthen it to succeed. And that is what I’ve looked to have done.

Although my training time has not been enough, one thing I do have in abundance which I am confident about helping me to succeed in this challenge is experience. 30/30 was 30 ultra marathons in a row! And I’ve been running big challenges since the age of 16. 7 years! I also think the experience of running in Adelaide last year is a good help, as it was very hot! I think there are similarities in the settings of Australia and the USA too, seeing as the USA is a new experience to me, the Australian experience can be a great factor in experience. Roads and street-settings are a similar layout.

To add to my frustrations in final preparations, over the weekend I came down with a flu bug! I have been as sick as a dog! This was absolutely the last thing I wanted, as it weakens everything, my immune system to my muscles. But rest assured I have been dosing up on all vitamins to recover, it is still there but I have seen improvements. Hopefully a good sleep tonight and I can feel better tomorrow and ready by Friday.

diathlete warm up

Diabetes Management

Of course the key element of all of this is to manage my diabetes successfully. This is the soul reason why I am doing the challenge of 7 back to back marathons, to show that I can do it whilst living with diabetes. That is the soul reason as to why I run full stop! And my message through doing this is not to say I have diabetes but I can run marathons if I want, it is a statement to say I have diabetes but it is possible for me, or anyone else living with diabetes, to achieve anything in life. Not only in sport, but down any path.

To run Marathons with diabetes it takes a lot of know-how indeed, it takes a lot of planning and I believe you’ve got to take some gambles too. As previously mentioned I have plenty of experience, which is why Diathlete has developed so well, and this means in the past I have taken the gambles already – and learned from them. This provides me with many ‘Dia’-tricks up my sleeve.

An example is when hypo. Now the prime aim is to prevent hypo levels from happening altogether, but with diabetes if you are burning so much energy, as you tend to do when running marathons, hypos can happen. The key is to never panic. Luckily for me I am as laid back as they come and do not do that anyway. If out of glucose supplies, from energy bars, gels to energy drinks, which on this challenge I hope never to be in that situation and to always carry what I need with me, then I even have a plan for that too. Simply by changing my running pace I am able to raise my blood sugar levels. I can put in sprints, then walk, then jog, then a burst of pace and sprint again… by mixing it up and altering the pace I am likely to trigger the ‘adrenaline effect’ – where my liver reacts to the sudden changes of endurance and releases glucose into my body, which, without insulin intakes to counteract it, rises my blood glucose levels. Therefore, temporarily, keeping me safe from hypoglycemia.

That trick alt to buy me time to get help or get to a shop and buy more supplies.

As said though – I plan to do my best to prevent off those hypos! And for me insulin management in consideration to the level of exercise is the crucial factor.

Personally I am on multiple daily injections (MDI) and currently take the insulins Levemir and Novorapid for my basal and bolus rates. For my Levemir, basal insulin, I have a split dosage. On an average day I inject 14 units in the morning, 14 in the evening – roughly 12 hours apart. I see my basal (background) rate as the key solution for control in exercise and especially when out all day running. Too much basal for the level of exercise means CRASH – hypo will happen. Too little could mean gradual hypers take place, or the slightest energy boost could zap my levels far too high.

Diabetes is all about balance and even more so when running extreme challenges. Through my experience, the tactic I am putting into play with this challenge is to inject just 3 units of Levemir in the morning before running. Now that seems very little in comparison to the 14 units on an average day, but both timing and calculations take place here. In the evening I am going to inject 11 units of levemir. This means that in total I have halved my daily average of 28 units down to 14 units for the day – which in consideration to the level of endurance, I predict to be a good cut down – if anything I may need to lower the background units some more.

Timing is key as if I inject the night time dosage too late, say 11pm, and I start running at 9am, there is a good chance that the evening basal dosage will very much still be in the system along with the morning 3 units – and therefore could mean too much insulin is working whilst I burn energy running at a consistent pace. This puts me at risk of falling hypo early on. I will aim to have 8-9pm evening injections and 8am morning ones – starting the runs for 9am.

I think within that first hour or two of running I certainly have the biggest hypo risk, given that the insulin is fresh settling into my system and potentially some of the evening insulin will be around anyway, so this is the point where I consume more glucose in forms of gels or drinks – to keep a balance. The breakfast meal needs to entail slow release carbohydrates to last throughout the morning.

The evening meal likewise needs to be quite filling – for I will burn in region of 4000 calories per run! I need to get that back and keep my energy up!

My bolus insulin doesn’t need adjusting as much as people would think. I know many people adopt the tactic of lowering their bolus insulin right down to rise levels and then burn energy to bring them back down through the day. That can work, but for me I believe the key is in the basal insulin working in the background. Therefore, I aim to keep a check of my blood sugar levels and have target levels to be at.

In mmol/Ls the aim is to be between 7.0 – 12.0 to get things underway. So somewhere between 120 – 200 ml/dl. I think more towards 12 (or 200) is better. What needs to be in mind is that insulin can take a few hours to operate and bring the levels to where they will be after eating – as firstly comes the food into the system, which temporarily makes blood sugar levels rise, and then comes the insulin to bring it back to normal (if you’ve done your calculations correctly). So the calculations need to be on a basis that once these sugar levels come back down, when the insulin is working, it is coming back down in the planned range of between 7.0 – 12.0 mmol/Ls and not any lower than that. This may mean my starting blood sugar level could be a little higher, such as 13.0 or 14.0 mmol/Ls but on it’s way to 12.0 or slightly lower within the next hour. So in terms of injecting my quick acting Novorapid insulin, I probably want to adjust it, depending on the morning blood glucose level, to act with my breakfast meal and get to the level I want it to be. This may mean lowering it by injecting one unit less than what I would normally require for the meal.

Yeah I know, I’m pretty smart…

But know this: all this info did not come about from any medical professional – it came about from 15 years living with type 1 diabetes, 7 years of extreme challenges, sometimes getting it wrong and learning from that – it came from living with diabetes, taking a few risks to begin with and learning from it. And through that I have been very successful over the years!

In having the Dexcom G4 CGM I believe I have a great tool available here to help prevent hypos altogether, as I can keep a constant check whilst running.

The Schedule and How I feel ahead of the Journey…

You can see more information on the full schedule by clicking this link right here and checking out the official Diathlete USA page!

I arrive in the Big Apple on Friday September 5th. On the 6th we have the opening event taking place and I can’t wait to be there and hear the talks from Dr Jason Baker, Lauren Antonucci, Zoe Heineman and then give the first talk of the tour myself too! My USA debut! This is a free event too and takes place at The Cure Thrift Shop, 111 E. 12th Street, New York from 7pm until 9pm. I look forward to catching up with the likes of Paul Madden and Justyna Wozniak at the event too!

The challenge of running around Long Island, NY, begins Sunday Sept 7th, going from the Cure Thrift Shop to Rockville. The following day and route is from Rockville to Babylon. And then Babylon to Medford, Medford to Stony Brook, Stony Brook to Huntington, Huntington to Queens and Queens to Manhattan – finishing back at the Cure Thrift Shop 111 E. 12th Street for around 6pm! So if about – come along and be at the finish New Yorkers!

On Sept 14th I am off the Minneapolis – looking forward to catching up with Scott Johnson over there and also speaking at a JDRF Minnekotas event on 15th.

Next is Miami where I’ll meet Jamie Perez and her son Tyler, who has type 1 diabetes. I’ll be arriving there on Sept 18th and a series of events includes a tour of the Diabetes Research Institute.

After Miami it is a long journey across America – to California. I hit San Diego on Sept 26th and speak to the Dexcom team on 29th.

After that I then head to San Francisco where I look forward to catching up with fellow IDF Young Leader, Lucas Fogarty, and also fellow type 1 Fabiana Couto. I arrive there Sept 30th.

I return to New York City on October 6th and head back home on the evening of 7th.

Despite this rather frustrating flu I’ve had, I feel sure I’ll recover in the next day or 2. And ahead of the journey I am excited to get things going, it is the trip of a life-time that I hope can help inspire many communities and raise awareness and some funds to support the fantastic work of Marjorie’s Fund!

To make a DONATION please see this link here – I can’t thank you enough!!!!!!!!!

You can also FOLLOW ON TWITTER HERE and of course LIKE ON FACEBOOK!

55km finish point

 

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ALS ICE BUCKET CHALLENGE

It is a global awareness typhoon! And for a very worthy cause that I can only presume was not remotely as widely known as it now is… all through people simply filling up a bucket of cold water, adding some ice cubes and chucking it over themselves!

Amyotrophic Lateral Sclerosis is a progressive disease which affects nerve cells in the brain and spinal cord. It is awful what the people with ALS have to go through. I look at myself with type 1 diabetes and can only say I am fortunate, firstly because in the UK the resources such as insulin are available in order for me to survive – and through that it becomes my daily responsibility long term to keep monitoring my blood sugar levels, make the key decisions on how many units of insulin I need with particular meals, or when involved in exercise. The bottom line is I have the freedom to take control of myself with my condition and that is why I am fortunate.

Sure, I could be better off – I could live without a disease at all! But when looking at the facts of my own way of life, where I have always been able to eat good meals in being educated in my condition, knowing what to inject, I am able to go out and party, get away with a few beers, I endure extreme endurance challenges and have always been active and successful. Yes, a lot of work, effort and understanding has to take place for me to do those things in living with diabetes, but yes, I can do whatever I aim to in life. When you look at things such as ALS – that freedom just gets taken away from people. They can no longer speak clearly as they once could do, they can no longer participate in their favorite sports and rely on daily care from other people. So that’s why this Ice Bucket campaign is just brilliant – and it is important that the people taking part understand the real reason behind it and donate/raise awareness, it is not just a trend to look cool!

I was nominated this week by my sister Kaylie, I made my donation via text and accepted the challenge… wearing a Mankini and using a bin filled with icy water! To be fair, I had just finished training that day and was due an ice bath…

My nominations went to Lucas Fogarty over in California who lives with type 1 diabetes, is a fellow IDF Young Leader and is founder of DASH Camp, John Sjolund over in Stockholm so no biggy for him with the ice, he also has type 1 diabetes and is founder of Timesulin, and my Mother! She is over in Malaysia somewhere right now and hates the cold…

To see the video, go on my facebook page where it was uploaded!

ice buck

Is my Insulin Working?

That’s the question right there…

Insulin is a peptide hormone produced by Beta Cells in the Pancreas – type ‘insulin’ into Wikipedia and it will tell you just that…

This hormone is not something the average person, of course not living with diabetes, would think twice about. Screw that, they wouldn’t have to think once about it! Many may have never even heard of such a name as their body naturally produces insulin all of the time. Every meal is naturally weighed out by the non-diabetic body and the appropriate amounts of insulin are released – all this happens whilst the non-diabetic-dude hasn’t had to pay a single thought about it; non-diabetic-dude can just sit back, pat the tummy down and think about whether or not the chicken pie went down the right hole alright…

For those of us living with diabetes we think about it, make decisions on and repeat the word multiple times EVERY SINGLE DAY.

WE ARE INSULIN ADDICTS!!!

And with good reason of course: we need this hormone in order to survive long term as our body simply doesn’t produce it at all if living with type 1 diabetes and also in some cases of type 2, or else does not produce enough insulin in other forms of type 2 diabetes.

In living with type 1 diabetes I have to inject multiple daily injections – every meal I am counting away with mathematical equations to work out exactly how much carbohydrates I have consumed and what the levels of glucose are, in order to find the right answer to inject the appropriate amount of insulin to keep my blood sugar levels stable.

I literally sit there pointing with my finger and pulling some cross-eyed expression to do the maths in my mind – when in a restaurant the waiter always comes and asks “is everything okay sir?” when witnessing this maneuver.

“It’s all good Jose,” would be a reply before whipping out a pen with needle on top and injecting my arm.

By knowing your body, mainly through keeping regular enough check ups on the blood sugar levels throughout each day, you can take control of it. Diabetes is a big responsibility to add to life itself, however, with great responsibility comes great power – I believe through living with diabetes and keeping positive I have been more determined in my life to live well and achieve, therefore there are no negatives about living with this condition in my own life. Over the past couple of years I have been able to keep really well controlled, with only a few hiccups along the way – it happens, but overall the control has improved greatly and so too has my health as a result. I’m extremely confident and well educated in my diabetes.

Recently, however, I noticed my blood sugar levels which in mmls I aim to keep between 4.0 – 10.0mml on average, creeping up to regularly being in the teen levels or higher – unexplained! I had taken my insulin after counting my carbs, had done everything by my own book that had been working very well over the years… and yet – hyperglycaemia???

Pen

What happens when your insulin doesn’t seem to be working?

It was as though my quick acting (NovoRapid) insulin was not working? It just wasn’t setting into my system! I even tried injecting more units than what I would normally require and still… hyper blood sugar levels, over two or three hours later!

Surely my food would have settled into my system by then!?

This was in fact the problem… my own mistake of course, but why do we make mistakes? To learn from them.

I opened up too many pens at the same time. Meaning I had about two or three pens out at once, it was mainly through laziness – not being bothered to look for the pen I was currently using and opening up a new one. The problem from there was that when the pen was not in use, I had left it out, probably in trace of the sunlight, basically going to waste.

It went off. The needles was still on the top of it too with no lid!

I did not think twice about it. Once the original pen had been used up, I went back to the other pen that I had used as I couldn’t be asked to find my in-use pen, only to find that it had been left out for a long while and was no longer effective as insulin.

It took a while for me to figure this out. Injecting away with a confused look on my face a few hours later when finding hyperglycaemia blood sugar levels!

After a few nights of waking up in the early hours of the morning high, feeling it more than anything, the need for the toilet and quench of thirst – similar to the symptoms when first diagnosed 15 years ago, I decided the insulin pen needed to be changed as that had to be the problem.

It was clear this was the problem when my blood sugars were registering 20.0 in the early hours of the morning and after taking 3 units of quick acting insulin I woke up at 19.1mmls.

Surely 3 units would lower the levels more than just 0.9 levels! It is said that 1 unit is supposedly to lower blood sugar levels by around 3 levels (without consumption of anything)

I also knew it couldn’t be my background insulin, which was the other alternative, as my background insulin pen had only recently been changed and for a few years now has been the key to my good levels – getting the bolus insulin correct has done wonders for my control.

The quick acting pen it was – and once changed…. problem solved.

What I dislike is the fact an entire insulin pen went to waste. It happens of course, but it is a sour thought when considering the world – the world where in many, many areas people are lucky to just get a syringe to consume insulin, once per day.

Having my levels running hyper for a few days really made me think about what people in locations of the world where they have very little access to insulin altogether must go through. I felt my eyes ache a little bit, I did not feel comfortable in my body for a few days. What if that was every day? What if those symptoms and aches were much worse, on a regular basis?

I thought of my fellow Young Leader in Diabetes from India, Reghunath, who sadly recently passed away through high blood sugar levels. It was preventable, a change of pen for me and I was right back on track – but over in certain parts of the world, there is little information on that, if not, little resources available.

reg

With Reghu in Melbourne last December

My advice to everybody is to always keep on top of your health, especially with diabetes. For me I need to up my game too – I recently missed a clinic appointment and eye test, which are key parts to knowing your long term control, so I need to get back on that phone and rearrange before heading to the USA in a few weeks time. I am currently also fuming with my GP as he keeps on messing with my prescriptions – no test strips a month ago, not even a repeat prescription this month, what is he playing at? There are many great health care professionals, especially at many diabetes clinics, that give good advice and are supportive – I recall my childhood nurses Jan and Sarah always being friendly and reachable, yet, there are far too many in the world who believe they are the center of everything. I have a GP that always complicates matters, he wants to make the decisions… “I know diabetes” he says.

I know my diabetes. That is what I say.

Living with diabetes means yes, you need advice along the way of course, but you are in control of you. You make the decisions, you feel your own body. You take responsibility and inject what you need to inject for certain meals, you decide to test you blood sugar levels. It requires the resources to be free to do that, of course, but it also requires the strength to keep on top of your own health.

You get one life and diabetes should never stop it. In my life, diabetes has made it.

I look forward to supporting Marjorie’s Fund in this upcoming USA tour and running 7 marathons for them – as I know this is a charity that provides support in the areas of the world for diabetes where it is needed the most. Let’s do this!

Diathlete training 2