‘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

#ShowMeYourPEN

Recently there has been a brilliant campaign going around the social network for those pumpers with type 1 diabetes where people have been proudly showing off their insulin pumps. Using the hashtag #ShowmeyourPUMP it has been great to see so many get involved – and it was started by a beaming lady named Sierra Sandison who won a Swimsuit Competition as Miss Idaho, whilst attaching her pump to her bikini.

I can see how wearing a pump has that possibly nervy effect in terms of showing off your body and the fact that Sierra proudly showed it off to all in the competition, let alone won the whole thing, has been a real boost to the pumping diabetes world’s confidence.

MISS IDOHA

 

Sierra Sandison, Miss Idaho with her insulin pump attached

The way I’ve always seen it, people are who they are and if you’re living life you should live to be proud of who you are. Living with diabetes makes no difference to that, in fact, you should be more proud and determined through it – valuing life and good health that extra bit more.

I love all the keen pumpers following in Miss Idaho’s footsteps and showing those pumps off, yet, I also know the majority of the type 1 diabetes world are currently on Multiple Daily Injections (MDI), using needles with pens or syringes to inject their insulin into their systems several times each day. I am one of those people! So I feel we should all join in on this campaign too!

With the pump, perhaps in cases there could be that element of I-do-not-want-to-show-my-body-off-with-a-pump-attached… which Sierra has stood up against brilliantly. But also with MDI, there is the possibility of bumps and bruises on the body caused through injections (always change the injection sites as much as possible, on the legs, arms, tummy and bottom) which could also potentially lead to some forms of self-consciousness.

In addition to that, injecting in public locations is always a part of life which draws attention. Personally for me I have always just got on with it, but on many occasions, particularly out in restaurants, you’ll get many looks. This itself could lead to people being nervous or uncomfortable about injecting in public – I know people who choose to inject in private all the time, even leaving to inject in the toilets in order to not be gazed upon. I recall as a young, slightly crazy, boy, having someone give me a dirty look (it seemed that way anyway) as I took out my syringe (it was before my pen days) and plotted where to inject. So after acknowledging the stares for long enough, I decided to pull down my trousers and publicly inject in the top of my rear-end!

That woman may well have thought twice before next frown-gazing at people trying to ‘shoot-up’ at dinner tables…

My point here is that people with diabetes should never be made to feel uncomfortable about their medical condition. We are who we are! And not only in restaurants, but many public places it can be difficult to feel confident or comfortable when in front of others. Even in airports there is that fear of will I be stopped because I am carrying needles about???!!!

This is what we need to change for everyone.

For me, I would never have even ran had I not been diagnosed with type 1 diabetes. I wanted to do something about it and through acting on that and keeping positive in my life, I’ve had so many incredible moments and experiences in my life so far – experiences which most people living an entire life-time would have missed out on, and I am still just 2 weeks short of my 23rd birthday! There’s a lot more to come for me – because I live with type 1 diabetes. I say to all living life with diabetes, live it to the fullest because you can!

Those on the pump, keep those pics coming #ShowMeYourPUMP

And those like me on MDI, well, here I am #ShowMeYourPEN!!!

Pen

 

 

Diabetes Marathon Man

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I have been into long distance running to support and help inspire people with diabetes for over 7 years now. Until recent times, the often words I heard regarding my extreme challenges were ‘impossible’, ‘plucky’, ‘risky’… heck even ‘foolhardy’ – basically, the feelings from the outside world for all my previous challenges beforehand were that I had no chance. But I was never going to accept that, the soul reason I got into running was because I have type 1 diabetes and I can do things about it – more so, I can do things that ordinary people without diabetes couldn’t.

I’ve always enjoyed silencing those people and perhaps I’ve earned a right now for people to see it a different way, particularly after succeeding in the 30/30 challenge last year, running 30 miles a day for 30 days.

In light of this, it feels a little bit odd ahead of the upcoming 7 ‘Manhattan Marathons‘ in 7 days challenge that I am not being slaughtered and called mad, told it is impossible or labelled a fool. The expectation is almost as if it will be easy for me…

I can say that no marathon is easy, for any participant. Even Mo Farah!

west country

Succeeding in an ultra feat is always fulfilling, that buzzing adrenaline rush where you can’t help but punch the air and shout “come on!” – all the while knowing that you’ve defied your medical condition. It is something that serves as motivation to many others too, which is the most rewarding factor. Yet, when people say “well done” after the challenge and acknowledge the achievement, as appreciated as that always is, most showing their respect do not actually understand the full effort that has actually taken place towards reaching that final moment of “come on!!!”

Only if you live with diabetes can you ever really get an idea to understand it.

Over the years I have more or less educated myself in my diabetes management to keep control, particularly during extreme endurance challenges, and to share a taste for what that “come on” moment is all about – it all starts in the preparations. My body is like a Formula 1 race car and my brain is the constructor team, having to make the crucial decisions. Here’s an insight into the calculations of team Diathlete:

Education in Sports and Diabetes

Down Under Run

Here are some notes copied directly from my documents, reflecting the exact details of my methods for control of my diabetes during ultra marathon runs. This shows exactly what my brain has more or less worked out with experience, to now take control during marathons, and the level of workings out that there is to consider in being a ‘diathlete’!

How diabetes affects an ultra marathon runner with type one diabetes

For my type 1 diabetes management I take x2 different forms of insulin:

  1. Novorapid Insulin – This is my ‘quick acting’ insulin I take for meals (known medically as ‘Bolus Insulin’) counteracting the carbohydrates and glucose I intake. Novorapid lasts in the system more or less instantly for approx 1 hour.
  2. Levemir Insulin – This is my ‘background’ insulin I take at set times each day. Some diabetics take this once every day, I take it twice daily as the insulin lasts in the system roughly 12 – 15 hours. Medically this insulin is known as my Basal Insulin, and it works as a cushion for control with long lasting insulin in my body.

Controlling diabetes is about keeping a balance of your blood glucose levels (BGL) and I have to aim to keep my levels between a daily target ratio between 4.0mml/s – 10.0mml/s. If the blood glucose levels reads below 4.0mml/s this counts as a hypoglycaemia level and my body requires glucose (energy) to pick the levels back up again. If my blood glucose levels registers above 10.0mml/s this is a hyperglycaemia with too much glucose in my body. A more serious ‘hyper’ is when the levels read higher into the teen levels and when above 20.0mmls this is when the body can become at serious risk of Diabetic Ketoneasicdosis (DKA)

Ketones are an acid remaining after the body burns its own fat. When the body is burning too much fat, it may cause ketones to become active in the bloodstream.

When Running a Marathon, it is likely that blood glucose levels will gradually decrease in this form of aerobic exercise, as the body is burning energy at a consistent rate in running at the same pace for a long period. Alternatively, anaerobic exercise, which entails short bursts of energy such as sprints and changes of pace, can create the opposite affect and cause the body to rise blood glucose levels. This is known in diabetes terms as the Adrenaline Effect. What happens in the adrenaline effect is that the liver reacts to the sudden bursts of energy in anaerobic exercise and release Natural Glucose into the bloodstream. This will cause temporary spikes to rise blood glucose levels.

Running Marathons usually means that the Glucose Levels will lower in aerobic exercise and the rate that the levels lower can vary on the amount of insulin in the bloodstream. This means I have to work out what my Blood Glucose Levels are Pre Run by testing my Levels and inject an appropriate amount of insulin in both Novorapid (Quick Acting) insulin with my meal (looking for slow release carbohydrates such as beans on toast) and, most importantly for the days activity, my Levemir (Long Acting Background) insulin.

The Levemir (basal insulin) will be in my system throughout the entire run and as I am burning energy for the majority of the day in running the marathon, I am effectively replacing the job of this insulin and therefore do not require as much in my body.  If I have too much Basal Insulin whilst I run, this will be likely to cause my Blood Glucose Levels to crash.

Hyperglycaemia (high blood glucose levels) means when running, despite being safe from going hypo (low glucose) as well as the risk of the DKA it also becomes difficult to concentrate fully, with too much glucose in the bloodstream feeding the brain. Which may affect performance.

Hypoglycaemia (low blood glucose levels) is an essential must to avoid. A serious ‘hypo’ level will put me at risk of at worst case a Diabetic Coma – as the body has not enough energy to function. What happens in a hypoglycaemia is that the body begins to shut down as the Brain is not being fed any glucose (sugar) – meaning a lack of concentration, possible symptoms of shaking limbs and shivering and finally, falling unconscious. Blood Glucose Levels under 3.0mml/s are considered serious hypos.

When I am running the main aim is to Balance my Blood Glucose Levels, using appropriate Insulin Management for the level of activity and consuming the appropriate amounts of carbohydrates for the rate of energy that I will be burning.

WHEN RUNNING MARATHONS INSULIN RATIOS:

Average Day (not running): 14 Units Morning Levemir Dosage, 14 Units evening dosage (roughly 12hrs apart)

On a Marathon Day: 2 Units Levemir morning dosage, 1 unit Levemir early afternoon dosage, 11 units Levemir evening dosage. 

I figured that too much Levemir when running crashes levels rapidly. Too little causes hyperglycaemia. By adjusting to x3 Levemir injections per day instead of x2 daily, and lowering the total intake by roughly 50% I am able to keep more consistent control throughout and post Marathons. Timing of insulin intakes is crucial – it can lead to there being too much or too little insulin in the system when running. The 11 evening units are important to not be too late in the night, as will still be active when running in the morning, causing a hypo crash. Minimum 12 hours in advance for evening dosage vital.

So basically – living with diabetes and being active in sport makes you a mathematical genius!

Beach Running

Diabetes Awareness in Sport

The instant fear I had as an 8 year old after my diagnosis to type 1 diabetes was: CAN I STILL PLAY SPORTS!!???

For as far as I was concerned I was gonna be the next Sir Geoff Hurst, in fact, this very upcoming World Cup 2014 in Brazil was going to be the one that I played a big role in winning for England… I was always very imaginative as a boy. Diagnosis to diabetes complete with a lack of reassurance from medical professionals at the time, left me feeling uncertain of my dreams - could I still compete!!?? As far as I knew, this newly found type 1 diabetes in my body was going to be with me for life and affected my lifestyles, particularly during exercise.

I was back playing football on the school playgrounds within months and in an 11-a-side team within a year, going on to play against professional opposition during my teen years too – okay, it may not have been a World Cup Final, but facing the likes of Gillingham FC for me suggests that you can compete at any level in any sport whilst living with diabetes. Understanding your body and being educated in control is key, which the best part of that comes from experience in living with diabetes – how to prevent hypos or hypers, managing insulin and keeping regular blood sugar level checks.

The defining line here is that with the supplies such as insulin and blood testers, clinics on hand to monitor long term health and provide advice, and general self-experience in living with diabetes… you can master it. And when you master it, you can accomplish anything -in sports and life in general. It doesn’t always go to plan, but then you mark that down as experience and learn from it.

Sport Awareness Against Diabetes Discrimination

Over the past year or so I have been welcomed to many sports stadiums by professional clubs, particularly in the football world, in my Diathlete campaign to show the fight against discrimination towards people with diabetes. We can compete at the highest of levels the same as anybody else, we just have that added responsibility for our own health more than others too.

In many areas, unfortunately, there is a lack of understanding, particularly with type 1 diabetes. Many schools may be an example. I recall my School, Trinity, not having the greatest of understandings as far as diabetes was concerned, however, they took my word for it – and allowed me to compete in a Sports Day or PE sessions knowing I could control myself and would bring supplies such as energy drinks or gels and my testing meter with me. I won an 800m race once in Sports Day for my Yellow Tutor group, and won it by at least 200m in front of 2nd place! There are many schools though that do not let children with diabetes play in sports through fear something will happen, which I completely disagree with.

A story though which makes me proud is of a young lad with type 1 named Alfie Huke.

Alfie is now 6 years old and ran with my Olympic Torch to help me over the Bristol finish line during the 30/30 challenge last year. Last year he competed in 6 races and came first in 5 of them, 2nd in the last race (but he could have been a bit tired then so we’ll let him off!) – which to me states how diabetes can never hold you back, at any age, in any sport or part of life. A can do attitude is the key in keeping positive, keeping control and living life to the fullest!

This post will highlight some professional venues and sports clubs who have supported my Diathlete Awareness against Discrimination in Diabetes Campaign in the past few years:

Stadium: Selhurst Park
Club: Crystal Palace FC
Sport: Football
Division: Barclay’s Premier League

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Stadium: Camp Nou
Club: FC Barcelona
Sport: Football
Division: Liga BBVA

FC Barcelona

Stadium: Eton Dorney Lake
Club: National
Sport: Rowing

Eton Dorney

Stadium: Hamsworth Park
Club: Wick Academy FC
Sport: Football
Division: Scottish Highland Football League

Wick Academy FC

Stadium: Mosset Park
Club: Forres Mechanics FC
Sport: Football
Division: Scottish Highland League

Forres DUK

Stadium: Tulloch Caledonian Stadium
Club: Inverness Caledonian Thistle FC
Sport: Football
Division: Scottish Premier League

Inverness Caledonian Thistle

Stadium: Pittodrie Stadium
Club: Aberdeen FC
Sport: Football
Division: Scottish Premier League

Aberdeen FC

 

Stadium: Tannadice Park
Club: Dundee United FC
Sport: Football
Division: Scottish Premier League

Dundee United FC

Stadium: Ibrox Stadium
Club: Glasgow Rangers FC
Sport: Football
Division: Scottish First Division

Rangers FC 2

 

Stadium: Fir Park
Club: Motherwell FC
Sport: Football
Division: Scottish Premier League

Motherwell FC

Stadium: Brunton Park
Club: Carlisle United FC
Sport: Football
Division: English Football League 2

Carlisle United FC

 

Stadium: Highbury Stadium
Club: Fleetwood Town FC
Sport: Football
Division: English Football League 1

Fleetwood Town FC

 

Stadium: Ewood Park
Club: Blackburn Rovers FC
Sport: Football
Division: English Football League Championship

Blackburn Rovers

 

Stadium: Old Trafford
Club: Manchester United FC
Sport: Football
Division: Barclay’s Premier League

Manchester United FC 2

 

Stadium: Anfield
Club: Liverpool FC
Sport: Football
Division: Barclay’s Premier League

Liverpool FC

 

Stadium: Goodison Park
Club: Everton FC
Sport: Football
Division: Barclay’s Premier League

Everton FC

Stadium: Racecourse Ground
Club: Wrexham FC
Sport: Football
Division: English Skybet Conference

Wrexham FC

 

Stadium: Alexandra Stadium (Gresty Road)
Club: Crewe Alexandra FC
Sport: Football
Division: English Football League 1

Crewe Alexandra

 

Stadium: Molineaux Stadium
Club: Wolverhampton Wanderers FC
Sport: Football
Division: English Football League Championship

Wolves FC

 

Stadium: Villa Park
Club: Aston Villa FC
Sport: Football
Division: Barclay’s Premier League

Villa Park

 

Stadium: Memorial Stadium
Club: Bristol Rovers FC
Sport: Football
Division: English Football League 2

Bristol Rovers

 

Stadium: Country Ground
Club: Somerset County Cricket Club
Sport: Cricket
Division: County Championship

Somerset County Cricket

 

Stadium: St James Park
Club: Exeter City FC
Sport: Football
Division: English Football League 2

Exeter

Stadium: Plainmoor
Club: Torquay United FC
Sport: Football
Division: English Skybet Conference

 

Torquay United FC

 

Stadium: Home Park Stadium
Club: Plymouth Argyle FC
Sport: Football
Division: English Football League 2

Plymouth Argyle

 

Stadium: Wembley Stadium
Club: English National Football
Sport: Football

Wembley Stadium uk

 

Stadium: Adelaide Oval
Club: Australia National Cricket
Sport: Cricket

 

Adelaide Oval

 

Stadium: AAMI Stadium (former home to the Adelaide Crows)
Club: Adelaide Crows
Sport: Australian Football
Adelaide CrowsStadium: Coopers Stadium
Club: Adelaide United FC
Sport: Football
Division: Hyundai A-League

Adelaide United FC

 

Stadium: Murrayfield Stadium
Club: Scotland International Rugby
Sport: Rugby

Murrayfield

Diabetes Week

In the UK for this week it is Diabetes Week (8th – 14th June 2014) to help raise awareness of type 1 and type 2 diabetes throughout the nation and share support and encouragement across the UK’s diabetes communities.

Diabetes UK are launching a campaign through the week on the theme of ‘I can’ – a theme I very much agree with in my own life with type 1 diabetes. You can tweet them @DiabetesUK with your positive diabetes stories using the hashtag #Ican this week.

In regards to I can, I’ve always believed that in living with diabetes I can still achieve anything I set my mind to do in life. From graduating out of University after being predicted somewhat low grades during my earlier stages of education, getting a BA Hons in Media Writing when ironically enough as a young boy that couldn’t hold a pen the ‘normal way’ they made me write in pencil until the age of 8, to accomplishing ‘impossible’ feats such as running the length of Great Britain! With the right attitude to life, keeping positive, keeping focused, anything becomes a possibility – I believe that diabetes in my life now serves as an added motivation to go and accomplish more.

I have diabetes and I can do anything I set my mind to do.

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Over the weekend I was in Edinburgh to meet with the International Diabetes Federation’s Board and present the plan for my global Young Leaders in Diabetes project – which, of course, represents another major challenge! Although the time is not right to mention the project just yet openly, I finished my presentation with a Nelson Mandela quote:

“Education is the most powerful weapon that you can use to change the world.”

Where there are views such as discrimination in many areas of the world, where there are preventable hardships and many restrictions in areas to insulin or blood testing meters/strips and crucial medical supplies, with high costs for care and a general lack of understanding for people’s control… I intend to keep on running to one day educate the world that if the people living with diabetes in all areas are provided with the daily supplies they require in medication and knowledge for their health, there is absolutely no limitation to what people can achieve down any path of life – whilst living with diabetes.

I would like to thank the IDF Board for the opportunity to present the aims of my project to them and for having me at their board meeting. I look forward to cooperating with them on this throughout 2015!

Selfie taken at Murrayfield Stadium on Sunday, Edinburgh 

MurrayfieldI have diabetes and I can look like one suave git, whenever I like to.

Diabetes World Cup

With the World Cup 2014 coming up in a matter of days, I felt it a right time to post on my experiences with Football and Diabetes – for my life growing up was simply a case of: football, football, FOOTBALL!!! My hopes, like the rest of the English nation, aren’t too high this year for our National team – especially after the display against Ecuador in the warm-up friendly. We were playing with Ben Foster in goal though among a few other questionable names too (dare I say Rooney…) so maybe, with our first team on the pitch, we could do better. You never know…

Roy Hodsgon

I grew up supporting Crystal Palace as a boy living in the South East suburbs of London, so I am a loyal fan of the beautiful game to its truest, not-so-beautiful of meanings. After diagnosis to type 1 diabetes in January 2000, my childhood dream of playing football was under some pressure.

Every little child has a dream and football for me was it. I would constantly kick a ball around the house, the garden, the local park, the school… it was my life and soul. I loved going to Selhurst Park and watching Palace attempt to win games and to be fair, for the core of the 90s, we were a strong side. My long-term memory is very strong, for in the 90s I also remember growing up and watching the best England team I have probably seen in my life in Euro 1996 and again in France 98 with that epic match against Argentina, where we were absolutely cheated!!! Sol Campbell, the heroic Salmon, headed the ball in and Shearer never failed anybody! And as for David Beckham’s sending off… he went on to show the world after that HE IS DAVID BECKHAM – YOU CAN’T SEND HIM OFF!!!

Being diagnosed to diabetes I was left in hospital asking the question: can I still play football!!!???

A life-long medical condition, yes okay, but DO NOT TAKE AWAY MY FOOTBALL!!!

There was a lack of reassurance for me in leaving hospital. I guess at the time the levels of research were not as high as they are now in diabetes education and it was pointed out that I would have to closely monitor all daily activities – which had me fearing for my future career.

Within a matter of months though there was an advert in the local newspaper, Crayford Arrows wanted new players as they were going from 7-a-side Bexley A League champions, to an 11-a-side level.

My Old-Man suggested to go along, so I did.

I got in. We trained from the April through the summer and I never had any difficulties in health playing during that period. We had a bottle of energy drink available if I needed it, I had a good meal in the mornings and I was back playing football. If anything, it bettered my health being out exercising.

During that summer the future of Crayford Arrows became in doubt. The team split up, the players and coach left to form another side and the bare-bones of the team I was training with remained there. New trials commenced and we patched together a squad to compete in the Bexley D League – with one of the Dad’s, Big John, with a son we called Little John, becoming the gaffer. He planned to just be the manager for one season in order to keep things going until someone else could step in for the team…

8 years later, he was still the manager in our final season together.

Every club in any sport or activity has a responsibility for its members. With me having diabetes, it was important that there was some kind of responsibility to keep control, which meant John had to understand it a little – which is difficult for him as he wasn’t someone who had to live with it at all. But without bringing it up at all, he would have the energy drink on the side during training or games, if I seemed not myself he would ask but if not, we just got on and played football and he always said to just let him know if I felt I needed to test my blood sugars. For me this was the best approach. It was more my responsibility to let John know if I needed to, yet, wasn’t constantly asked about diabetes – so I felt like all the other lads, just there to enjoy football.

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In my early years of playing football, it was more likely that I had a hypo (low blood sugar levels) than a hyper (high blood sugar levels) after a game; however, it did not happen all that often. There were a couple of incidences where my levels crashed after a match and I needed the Parents on the side-line to quickly aid me with drinks or energy bars, yet, we always had that handy. There was one incident on the pitch where I went hypo that I can recall, it resulted in an own goal, I desperately scrambled to clear the ball away and got my coordination all wrong as it bobbled off my shin pad and in the net.  I asked to be taken off then, not feeling too good, and in checking my levels was hypo. I believe this was the case in my earlier years for two reasons, the first being my insulin. In my younger days I was on an insulin which is not even in existence today – Mixtard 30, It is a concoction of what now is two separate insulins, Basal Insulin (long term acting) and Bolus (quick acting insulin). This mixture made it more likely for a hypo drop to take place, especially with the games on Match-days being in the Morning times soon after my injection.

My insulin then altered as a boy to Novomix, which was quite similar but perhaps an improved version.

To begin with, I was a left back. Whilst we had John Church, our Millwall supporting gaffer on the side-line barking out orders such as “if in doubt kick it the f**k out!” we also had a good team of supporting Dad’s involved. Eddie, a lad named Matt’s dad, was a fitness crazed Hell’s Angel and would have us doing press ups during training sessions… Richard, whose son Charlie played upfront, was the coach we all needed, doing the lino-flag whilst barking out motivation on the side: “don’t let him beat you Gav! He’s not getting past you is he Gav!” and then when the speedy winger knocked the ball past me to try and do me for pace, “take him down Gav!” and we also had Trev who was the calmest of the bunch and his son Bill played in Midfield, he was like our assistant manager.

On one of our training sessions former England, Crystal Palace and Arsenal legendary left back, Kenny Sansom, came down and trained us. It was a great experience for us all and he liked me as I had an Eagles hat on my head, played left back and had developed a nicknamed of “Chopper”.

kenny

Richard had come up with it, for my first key skill playing football was mastering the slide-tackle. They were usually perfect; I would time it so the ball would get taken first and then the follow through made sure the player felt the tackle and hit the deck. Nowadays this would be deemed a foul as football is a pantomime and players get hurt without even being touched. But, a real tackle kids, is when you take the ball first, before the man, then the man goes down afterwards. Football is a contact sport and it’s about time diving, which consists of pretending you are hurt and rolling about on the floor with no shame, was deemed the wrong and not perfectly good and solid tackles.

After a game in the mud of crunching tackles, Rich started to shout out: “go on Chopper!” when the opportunities to make tackles arose.

It helped give me more confidence.

In playing Left Back, it didn’t require a dramatic amount of running as perhaps other positions. I would work up and down the left side, mainly in the defensive areas, so this meant I didn’t create too much of an adrenaline buzz – which can have other affects I will mention in diabetes.

As my teenage years came about, eventually my insulin patterns changed with my body growing. I then took Levemir as my Basal insulin (long acting) and Novorapid as my Bolus (quick acting, for meals etc).

My position on the football pitch also changed, I played Centre Midfield. My role there was to simply keep on running!!! Something I am very used to in the present day!

I would wear other teams out more than anything, working hard, getting back and winning the ball, getting forward and creating goals or opportunities. I was box-to-box, up and down the pitch like a nutter. With all the running, it would seem my Blood Sugar levels would drop through burning so much energy, but instead it was quite the opposite. I would constantly be involved with the game, which meant my pace kept on changing – sudden sprints, to darting runs back or forward. This adrenaline rush meant that my body triggered the ‘Adrenaline Effect’ and my blood sugars would rise. This happens when the body reacts, possibly caused by the sudden sprints, and in that reaction the Liver releases Glucose which, without any quick acting insulin on hand such as when eating  meals, meant my levels shot up high.

DCF 1.0

I would come off the pitch with a Blood Sugar of around 20.0 sometimes, which was quite higher than the targeted range of 4.0 – 10.0mmls. The other lads without diabetes on the pitch would be keeping a blood sugar level of around 5.0 – 7.0mmls comfortably of course. So for me, I was battling my body and the opposition, and being hyper meant that concentration levels become much more difficult.

It was hard to notice though, it has to be said. In my latter years at Crayford, I was the main player in the team, being the midfield engine, and was a class-act!

But when playing football or any sport, to be at your very best you want full levels of concentration.

It was more and more frequent when I played for semi-professional standard Dartford FC. I had a successful trial with them and with it being a higher level, in being closely watched and monitored all the time and in a big squad, the pressure was always on and this meant much more adrenaline – so therefore, much higher sugar levels for me. I had to work out a way to overcome this, so I tested more regularly and decided that upping my Quick Acting insulin with meals would not do it as it would mean I crashed towards a hypo quite quickly. Instead, I looked at upping my Levemir, background Long Acting insulin.

The problem with this is that despite levels going higher in a game, within 2 hours I found that my levels went from the teens or possibly 20s in blood sugars to absolutely crashing down towards a hypo, under 4.0mmls, sometimes as low as 2.0mmls. This happens with the Adrenaline Effect, as hypos are delayed by the glucose release, yet, the energy has still been burned up.

In upping my background insulin by one unit, I found although it did help prevent the hypers during game-time, it meant the CRASH of blood sugar levels happened much more quickly – within an hour.

The key to defending this was to eat right after kick-off.

Fortunately, when at Dartford, it was the kind of level where sandwiches were always provided – so I would dig right in!!

I recall scoring an absolute wonder goal in a training game for Dartford against the age group below. It was still a high level game and the one goal decided it, but it deserves a mention as it was sensational. The ball was laid back to me along the smooth all-weather artificial grass pitch they had and I just stroked it with much belief and instinct perfectly… it looped up, curled and lobbed the goalkeeper. To do that my levels of concentration had to be at the maximum, supplied with self-belief. That was what I had in my game as a boy.

I returned to Crayford for their final season and enjoyed a year where we went on to win our League. I won a Jack Petchey achievement award that year too, which meant funds went towards an all-weather training pitch at the ground, the lads joked and called it ‘The Gavin Griffiths Pitch’ every time we trained on it.

I did have another stint back at a higher level in my later teen years before taking Long Distance running more seriously, but a part of me will always love a good kick about. To be honest I feel the modern professional game is filled with far too much money and greed, which is why although I look forward to the World Cup in Brazil, I don’t expect anything fantastic from any of the teams. But back in the days in the Sunday morning mud as Chopper – that was what real football was about to me.

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The fact is I was a decent player as a boy – and diabetes never held me back. I even got to live my childhood dream in a sense and walk around Selhurst Park to an applause of the fans after being an Olympic Torch Bearer, it was through diabetes and keeping positive which earned me that honour too.

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Key facts in control with diabetes and football:

  • Make sure your club / coaches understand you do have a medical condition
  • Have supplies handy on the side-line such as Energy Drinks, Gels etc
  • Test your blood sugars regularly: before, at half-time and after
  • Do not panic: if sugars go low, take what you need to take and get back out there. If they go high, alter your running which is difficult but go for less sprints and more consistent running
  • Have a good energy meal before a game and have a good meal ideally within an hour after the game too. Do not adjust to more insulin after game if levels are high, keep it the same.
  • Go out and give it your all!

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