The Impact of Stigma on Identity Formation within a Diabetes Football Community… A Research Project

For the last 3 and a half years The Diabetes Football Community has been doing its best to be a leader of peer support for sporty people with Diabetes and those specifically with a passion for Football….. As we’ve seen growth, an increase in engagement and increase in awareness there has been widespread acceptance that there is a need for this group to come together, to provide help for a population of people who felt under-supported before TDFC arrived. However, a big question loomed for me from the off…. Why has it taken until now for this group of people to feel supported? And why has the community continued to develop?

In the pursuit of these answers I decided I needed to expand my knowledge and investigate the issue. So, just under 3 years ago I took the decision to study for a master’s degree in Socio Cultural Studies of Sport and Exercise. By choosing this particular path it allowed me to create my own research project which followed the degree’s subject, but in a field I was passionate about. This gave me the opportunity to search for the answers in the hope that I could glean insight which may help alter the narrative that people with type 1 Diabetes have been up against in Football throughout my entire life.

So, I’m really delighted to say that I’ve now completed my degree and am awaiting the final results. It’s been an incredible 3 year journey which has taught me a lot, but in this blog post I want to give a bit of background and discuss some of the reasons why I feel it’s a hugely important step for the community, as well as the concepts and findings which have been presented within the conclusions of the study.

The Why?…

I wanted to provide academic foundations for why this incredible community continues to grow, support and enhance the lives of those who are involved. Academic research remains at the forefront of change globally and I felt this was the right way to try to influence leaders across the globe, into considering how the narrative for Diabetes care should not be completely focussed upon medical enhancements and technology, in improving the lives of those with T1D.

The How?…

The research I conducted involved analysing some of the online content of blog posts, Facebook posts and tweets as well as interviewing several type 1 members of the community who had volunteered their time to support with the project. This allowed me to collect a substantial amount of data to analyse and compare with previously written academic literature.

What was found…

So, the really important bit…. What were the findings? What did the analysis show about our community and how stigma impacts on members of our Diabetes football Community living with Type 1.

Well… there’s plenty to choose from.

As most people would expect stigma towards Diabetes was shown again to impact the lives of those interviewed, whilst also driving the success of particular online content, as posts which were uplifting, dispelled stigma and provided education against it, were all highly viewed and extremely important to community.

I don’t think that would come to the surprise of many involved in TDFC, however the strong feelings of discontent surrounding type 2 related stigma imposed upon those living with type 1 was an area which I was a little surprised by. The feelings demonstrated were strong and it may have something to do with the particular field the study was focussed in, Football. With Football an unforgiving sport, where weakness is often exploited and ostracised you can potentially see why some of the participants felt strongly towards a stigma bestowed upon them which doesn’t actually represent what they live with. Yet, in their eyes it affects how they could go about their business on a Football pitch or Futsal court.

But it’s there on that very Football pitch or Futsal court where one of the most surprising findings from the study really comes to fruition…

As I’ve already mentioned, the show no weakness culture, masculinity and macho approach that’s embedded in Football really pushes players to hide anything that could be perceived as a weakness by fans, players, coaches or the media. This is why for example there’s not a single player in any professional Football league in England who has come out as gay for example… It’s a perceived weakness which goes against the image of masculinity and strength within the sport so therefore must be hidden. In all other parts of society that stigma is beginning to break but in Sport it still remains, and I believe that it forms the basis of why those in our community, who strongly identify themselves as a footballer, hide the fact they live with T1D. In using secrecy as a coping mechanism for avoiding stigma, academic research has demonstrated that this may increase the likelihood of poorer self-management and thus health outcomes. This is a highly significant finding because for the first time I’m suggesting, with support from the research, that the culture of the sport I’ve grown up with may have a detrimental impact on my health, as a result of the culture within Football, which depicts difference as weakness and ultimately attaches it with negative stigma.

So, with greater identification towards football, you’re more likely to hide your condition, and in hiding your condition you’re less likely to do the right things to self-manage it. With this academically evidenced throughout this study it’s a finding which really needs much more investigation to test its transferability. Nonetheless, when I consider my own experience as young person growing up with the condition, this finding resonates very closely to my experience. I love the sport I’ve played but I now question the impact that it’s had on my mental health, choices and behaviours.

However, there are also questions that stem from this which could really open the door for some interesting exploration. For example, is this just as a result of the Football culture, a team sport surrounded by mainstream players, traditionally with a working class – middle class background? Does it differ with other team sports such as Cricket or Rugby, where the tradition of the game may encourage a different culture and demographic background? Could we also consider a difference between Men’s Football and Women’s Football? Is there a cultural difference between the genders?

But then what about individual sports? Is this an issue which disappears or lessens in individual sports because there isn’t the need to hide from teammates, coaches, referees and opposition players what you need to go through to get out and play? Would we see a different view from a T1D Tennis player, Golfer, Badminton player, runner or cyclist etc?

Although the evidence of the study suggests a significant challenge for those with T1D accessing a sporting culture where weakness is shunned, I do think we’ve seen an opportunity in the findings to help alleviate some of that strain. It’s not all bad news!

This mechanic we’ve created through TDFC has helped to bridge the gap in identification for this population. Building identity with diabetes is important, it helps psychologically, socially and with the eventual medical outcomes for the condition. The research is out there evidencing this but in what we’ve created we’ve potentially helped people identify with T1D who otherwise may not have done. Those people have been so keen to keep it secret because of their life’s interests and passion in Football specifically, that actually by linking their passion to the condition we might have helped gain their attention enough to identify themselves with T1D, seek out others with their condition and ultimately receive help which betters their self-management.

Combining this with the use of Social Media as our prominent tool for communication actually increases this likelihood too. Through Social Media you can view content, see what people are up to and get support from posts without anyone else knowing you’re looking. This ability to temporarily and intermittently identify with T1D is something I would guess has happened a lot. In these moments the individual can see the benefits they may get from associating with the community, talking to others who share their passion within it and begin to develop their identity with the condition that in the long run, I certainly believe and so does the academic literature, will impact positively on self-management.

It’s no secret the positive impact that peer support has for people with T1D, this has been evidenced for years with strong support for it in this study too. However, if you have no inclination to seek out others, or no reason to identify with your condition because your favourite thing in life actively tells you not to, how on earth would you find it? You wouldn’t. So, this study really for the first time suggests we need to create a positive affiliation to draw people to their condition and break down some of the stigma for those who find it hard to identify with T1D. Without that, peer support is not able to cut through to those who may need it the most. It has a hugely significant impact on people who partake in this kind of support but why isn’t everyone doing it if that’s the case? I think this is an area and idea which may help to uncover some of that why….

Peer support is an incredible tool that buffers against stigma but another area that comes through strongly in the study is the idea that personal experiences in life and of stigma are a key driver in identification with T1D. I think for this population of people they are more likely to experience stigma as a result of their decision to put themselves in an environment where their condition is far from embraced, actually actively shunned. Only 2 weeks ago did I experience a pretty obvious stigma related slur, and in the last year I’ve experienced stigma on 3 different occasions all of which were related to Football/ Futsal. I don’t think it’s a coincidence.

This population struggles to come to terms with their condition in the face of it. Which is why TDFC has grown, expanded and continues to do the good it does. Because it tackles and dispels stigma whilst providing a positive view of our condition, which for the first time in our lives is celebrated rather than shunned. THIS is why TDFC has been successful. I knew the reasons deep down but now I’ve taken the time to research it and understand it from a social and cultural perspective, I believe my view of our direction is far clearer for the future, whilst I really hope it can help to influence decision makers within Diabetes care to look at niche populations in greater detail, and more importantly on the impact of stigma on self-management. I’d like to appeal to the Diabetes academic community to really consider this area in the future…. The below link shows a recent poll I ran to get a feel for how it’s affecting behaviour/choices and I think the results speak for themselves:

https://twitter.com/chrisbrighty1/status/1295416282695770116?s=21

With only really the Australian Centre for Behavioural Research in Diabetes (ACBRD) focussing in on this area globally, it needs more. I might add they’re doing a fantastic job with it and a number of their papers heavily influenced my thinking, but they can’t be the only institution driving this.

Evidenced in my study and on the TDFC website is the impact the community has had on altering behaviour positively. We’ve achieved identification with T1D for the first time in this population. Which I firmly believe has resulted in an upturn in the psychological and Hba1c measures that have been achieved within this population. This wasn’t achieved through the traditional models of care provided by Doctors and Nurses but through a new innovation which championed a new way of looking at the condition. Now this is not to diminish the contribution of our incredible Diabetes teams but rather to say, there’s more we can achieve, if we work closer together.

The overall outcomes of a condition determined by self-management is far more holistic than looking only to the medical professionals who support us for the answers. Sometimes, the answers come from ourselves, our choices and our behaviours…. Which may have been influenced.

I hope the blog gives some real insight into what I’ve been working away on in the background to try to drive change for our community as well as raising awareness of why TDFC is a special project.

Throughout all of this it’s important to know that TDFC stands right there beside our NHS and healthcare workers across the globe in trying to make life easier for people with Diabetes. We couldn’t do it without you and I hope we can help you more greatly in the future.

I must say a huge thank you to those who have shared the last 3 years of my journey and the research, projects and teams I’ve been a part of at the University of Worcester. Whilst I can’t forget the contribution of both the University itself and my supervisor Dr. Gyozo Molnar. Without their support it would not have been possible.

If anyone would like to discuss the study with me, its findings or any future collaborations with TDFC please do get in touch via email:

thediabetesfootballcommunity@gmail.com

Thanks for reading,

Chris

Jon Rosser: My life with Type 1 Diabetes

I’m Jon Rosser, 27 years old from Bristol and have been a type 1 diabetic for 17 years. Being involved with TDFC has enabled me to link up with other diabetics of varying ages and share our experiences, however this is often very focussed on the present – what we are currently doing, learning or going through. Reading these blogs, I found gaining an insight into these people’s pasts and hearing of their journey has been really enlightening and valuable, even for someone who has already learned to an extent how to live with the condition. So the obvious next step was to try and somehow put down my story outlining the changes it has made to my life and the lessons I’ve learned in the hope that others can take something from it like I have done. So here goes…

My journey starts with diagnosis at the age of 10 and the very familiar story of the tell tale signs. I was always thirsty! I didn’t really notice this symptom but my dad whose late mother was a Type 1 noticed I was increasingly up and down to the kitchen tap, filling up pint glasses of water and knocking them back like no tomorrow. As a result of this I was back and forth to the toilet and it didn’t take long for him to step in. Looking back at it now I suppose I was quite fortunate that my dad noticed this going on and intervened pretty early as I can’t actually remember feeling too bad! He made me do a urine sample and booked me into the doctors. A quick ketone test and finger prick confirmed what my dad had feared and arrangements were made for me to forget about going back to school, pack a bag and get to the hospital. Being a 10 year old I can remember feeling a bit oblivious to what was actually going on, but I knew that something had ultimately shifted by the way my dad had reacted, he seemed gutted and spoke to me about how we were going to go about telling my mum when we got home. I had never even heard of diabetes and was still completely naive about what was to come. 

A few hours later I was at Southmead Hospital being admitted into the children’s ward. A flurry of nurses were showing me my bed, where the toilets were, where the common room was, a full on tour of the facilities and this was the point where I kind of started to realise that I was here to stay for a while and this whole situation was going to be the start of something that was going to change my life forever. I was on this ward for 5 days and during this time I had to learn the skills that would ultimately keep me alive. One event that sticks in my mind from this period was when a 16 year old boy got rushed into the booth next to me. Other kids on the ward were all chatting to their neighbours so I welcomed a new face to hopefully ease the boredom. However on admission his curtains were shut and I remember feeling that the nurses were actively discouraging me from trying to say hello, and no sooner had he arrived he was gone again. I didn’t find out until years later that this guy was also a diabetic and had not woken up one morning due to having a serious hypo during the night. Looking back now I realise it was the right call not to let a newly diagnosed 10 year old get wind of this! The ward had a classroom where I spent a few hours a day which was nice as it got me out of my bed, but I remember being pulled out at regular intervals to be finger pricked and stuck with syringes and this was another point where I started to realise this was going to be the new normal from now on, and I didn’t like it one bit. How was this going to work at my own school? What about at football? I was bang into scouts at this age so how will I go on the camps? Can I even still do all these things? The answer of course was yes, but the anxiety and worry about all of this was something I will always remember. 

Fast forward a bit and I’d settled into my new routines, teachers and coaches had all been really engaged in making things as easy as possible for me. But it wasn’t all plain sailing by any means. I was initially put on the 2 injections a day regime and it wasn’t long before I felt frustrated at the restrictions of this, especially when transitioning to secondary school. Having to inject my insulin at the same time morning and evening, and knowing I HAD to also eat at these times each day meant things such as after school sports fixtures, clubs, and even just hanging out with friends would all have to be arranged around my insulin and meals. It took so much planning and at times I found it exhausting and stressful. 

30112008530

I want to shift the focus largely on how I’ve dealt with my diabetes within football and sport and I guess I’ve never let it stop me, but there have been times when I felt it has hindered me. At the age of 15 I joined Forest Green Rovers from just previously playing local junior football, and the training stepped up which was great! But it was a much more competitive environment and although to a certain extent I had always tried to keep my condition under wraps (which seems to be a common theme from guys writing these blogs), in this environment I found myself doing this even more. I didn’t want to show any weakness and felt an obligation to keep up with the standards being set, often not recognising that in order to do this I needed to take time out of sessions to take on sugar or test my levels. Occasionally this led me to playing on through hypos and my standards suffered as a result. Sometimes coaches and players would confuse my hypo reactions with being lazy or uninterested, and I found trying to explain what was actually going on sounded like excuses. The fact I was still on the 2 injections a day meant that I would get home from school, have to hastily eat a carby meal (to avoid going low during training) before heading straight off to train on a full stomach which personally my body did not deal well with – I’d feel heavy and slow. It was the same with the games – we played in a floodlit league so fixtures would be midweek evenings so my preparations would never be ideal. These pressures ultimately led me to change onto the basal bolus regime and immediately after I did that I saw the benefits, not just with my football but with my day to day life. The flexibility was something I’d been longing for and I continued to play for 2 more successful seasons at Forest Green, winning individual awards at presentations and I remember feeling really proud and realising at this point that I had gotten the upper hand on my diabetes and vowed to never let it beat me.

Another event that always sticks out to me as a time where I felt I overcame the urge to keep quiet and let my diabetes win was in a tennis tournament when I was about 17. Over the course of about 6 weeks I had played a match every week and got through to the final without any diabetes related issues. In this final however I struggled from the start. There were a fair few people watching and I was putting my performance down to nerves and threw away the first set in record time. On the switch around I asked the umpire for 10 minutes just to check my sugars which for me at the time took a lot of courage, I was 3.1. I remember sitting there in front of the crowd openly testing my sugars and taking on food which is something at that age I always felt really self conscious doing. My opponent was getting restless as were his supporters watching on but I stabilised my levels and got back out there… I smashed him in the next 2 sets to win the tournament. Like I said this was a real moment of realisation that I could achieve things in sport regardless of having this condition and getting dealt hypos, and it gave me confidence to keep aiming high. 

IMG_0137

The next major milestone for me was gaining a place at Plymouth University. Leaving the family home to move to a new city with new people, new surroundings and new routines was pretty daunting, and when you throw diabetes into the mix it was quite a challenge. I was having to shop and cook for myself and it took a while for me to get used to having full responsibility for what I put into my body in order to maintain good control of my condition. Students’ diets are notoriously not the best so resisting the urge to follow examples of quick, convenient, often high sugar and high carb meals set by my new found friends was important and something I’m glad I focussed on, as it set me up well to continue to control my diabetes successfully. I quickly got involved with the Uni football club and was playing regularly, although the routines and rituals of a university football club were much different to what I was used to. One thing I struggled with was the fact that if we’d win on a Wednesday afternoon (and often even when we lost!) after the game it was shirt and tie and straight to the bars. A lot of these guys wouldn’t take time out to eat post match, and especially after a good win, wouldn’t go home until the next morning. Being diabetic, I felt a bit of a kill joy having to temporarily leave a buzzing group of lads for a few hours to go and get some food of substance and make sure I recovered well in terms of glucose levels, especially when there was alcohol involved! This was a small price to pay though as I found if I put my diabetes first, I would have a much better time celebrating later on knowing I’d done what I needed to do in order for my sugars to behave (as well as they could) during a night out in Plymouth’s finest establishments. These were some of my best times playing football, the social side of the club was immense and winning a varsity and a cup in my 3 years at Plymouth are things I remember for the achievements and not how my diabetes hindered me!

6093483-large

The most recent landmark in my footballing life has most definitely been getting involved with TDFC. I remember turning up to the first session and experiencing an environment where everyone there would openly discuss the condition, openly test their sugars and inject insulin, there was an underlying bond straight away. I had been so used to dealing with diabetes in a changing room and on a pitch on my own – it was solely my problem, and to feel that problem shared by everyone else there was so refreshing. No feeling guilty for taking time out to test sugars, no strange looks for sticking a needle in my arm, just a feeling of understanding and support. I have played in both DiaEuro tournaments that the UK team has entered in Bratislava and Kiev, and both times were amazing experiences. Playing against some top nations and top players gives you that drive to improve and I feel since being introduced to Futsal (which I had never played before TDFC) I have learned and improved my game as well as my control of my diabetes. I have also found myself transitioning skills I’ve learnt from Futsal into my 11-a-side game which is great! I’ve also found my Saturday team mates have taken a real interest in what I’ve been involved with regarding TDFC, seeing it on my social media and things like that. One of the lads has even adopted a pre match ritual of eating glucose tablets with me before kick off and now swears by it! 

IMG_0758

So that’s my story (so far!) of my life, football and sport with type 1 diabetes. My message to anyone maybe struggling to adapt to life and sport with diabetes is not to hide it, be open and honest about the problems you may encounter, it’s not a weakness! Although it presents challenges I feel diabetes has made me stronger in many ways, especially with discipline and will power… so keep at it!

Thanks all!

Jon

Instagram: @rossergram

Alfie Carr: Taking it in his stride!

We were delighted to receive a message from Alfie’s Mum recently.  Alfie was diagnosed with diabetes during the Corona Virus lockdown in the UK and we have been delighted to offer support to him.  One of our squad, Craig, has been speaking with him and has even arranged for Alfie to speak to one of his favourite players at Notts County, who he supports.  Alfie’s Mum also tells us that he’s saving up to purchase one of our training tops.

IMG-20200616-WA0001

While it’s great for members of the squad to be writing their blogs, we absolutely love to receive and publish stories written by other people, such as this.

Alfie takes in everything he reads and sees. He read Rob’s diagnosis story blog, and wrote his own for his home learning this week! Here’s Alfie’s story and if you want to share yours, get in touch:

IMG_20200616_090911_730

“Inspired by someone else’s diabetes journey story, I wanted to write my own.

It was spring 2020 and we were in lockdown due to the corona virus outbreak.  I started drinking a lot and weeing a lot. I got tired and just thought it was due to working hard when I was doing learning. I lost a lot of weight, mum said I looked thinner, she thought I was just growing. In the night I was going to the toilet about 5 times and began to wet the bed sometimes. Mum thought it was just a water infection. So on April 23rd we went to see the doctor. Due to corona virus we had to wear a face mask. We saw a nurse and she asked me to do a wee sample- no problem for me because I couldn’t stop weeing! She checked it and asked to do a blood glucose test. I didn’t really know at the time what it was. She got a finger pricker and said I was 29.9 and it could be a possible case of diabetes. She said we had to go to hospital. When I got there they did more tests and my sugar was 35 and I definitely had diabetes. They asked mum lots of questions. I felt a bit worried about the injections but once I had done it I realised it wasn’t that bad. When I found out I could still do football it cheered me up. In hospital I learnt loads about diabetes, but what I remember the most is how supportive my football friends and family were. My team made a video for me and it made me smile and cry happy tears at the same time. I have been at home 7 weeks now.

IMG_20200526_095445

I’m only just starting off with diabetes but I know I can handle anything.”

Scott Burrell: My Story with Type 1 Diabetes

Disclaimer – Some of what you’ll read in Scott’s journey portrays difficulties, mistakes and challenges that have shaped who he is. As human beings we cannot go through life without making difficult decisions, but through doing this, we learn and evolve into who we were meant to be. But please be warned that some of Scott’s journey touches on some of those difficulties, mistakes, challenges and emotions that some may find tough to read.

It’s an extremely powerful, emotive and truthful account of how life has been for one of our own and we hope you enjoy the read.

Over to Scott to take us on his journey…

“My name is Scott Burrell, I’m 31 years old and have been a Type 1 Diabetic for 20 and a half of those 31 years! I remember my diagnosis day/week incredibly well considering I was only 11 years-old. It was the October half-term (so yes strictly speaking I’ve been T1 for longer than 20 and a half years now!) and I wasn’t going down to the village green to play football with my friends. I hadn’t been on any day of the break as I’d been laid on the sofa at home, this was very much out of character as usually I would be down that green every single evening in the summer and every day during school holidays playing football. I was drinking ridiculous amounts, drinking things I would never usually drink and even at one point freezing fizzy drinks (all full sugar in those days!) in an attempt to ‘freeze out’ the acid! The crazy mind of an 11 year old child! It had got to the point where I was going for a drink every 5-10 minutes and going to the toilet 6 or 7 times an hour. My parents called a doctor out on the Wednesday night as I had deteriorated again quite quickly, I did a urine test which was no problem at all as I was going to the toilet so regularly and as soon as that was done the doctor advised my parents to take me to the hospital ASAP. My dad drove the three of us to Pilgrim Hospital, Boston, Lincs (fantastic hospital for T1 care by the way!) and before I knew it I was on the ward strapped up to many drips and cables looking very much like a scene from Casualty was about to be shot…without the tomato sauce for blood! My mmol on the finger prick was 34.7 (normal range between 4 – 10 mmols ) and I was diagnosed T1 straight away. I don’t recall having ever heard the word diabetes before let alone having any idea what it was.

I remained in hospital for the next four nights and left on the Sunday. I’d had to take on so much information during this time I’m sure like everybody in this situation. I remember not being allowed to leave hospital until I’d done an injection myself, I was desperate to leave so reluctantly did one into my right quad which was a favoured injection site of mine for many, many years. This was so horrible and painful but the price I had to pay if I wanted to leave the hospital ward. I was on a twice daily mixed insulin, Humulin M3 and took this before breakfast and before evening meal. It combined 30% fast acting and 70% long acting. My parents were advised to practice on each other with water and I was told I could gain practice by injecting into an orange! I’m sure times have changed an awful lot now!

I would say initially I was doing pretty well as a T1, I tested fairly regularly, always logged my results in the log book, never missed an injection, tried as best I could and my hba1c was always in the 6-8 range so fairly acceptable. I hid my diabetes as much as I could. I always had breakfast and dinner at home so had no need to take any insulin to school with me and this suited me, I was different. As far as I knew I was the only T1 in my year and possibly in the school at the time however if there was another keeping it secret like myself then I wouldn’t know anyway. I had told a couple of close friends that I’d been in hospital and that I now had Type 1 Diabetes but similar to myself none of them had any idea what it was. The teaching staff were aware and I remember the first time I had to discuss this with a teacher, I was petrified. I was in the changing room for PE and was told by the hospital to have a fun size Mars bar before any sport, of course eating was banned in school classrooms and changing rooms so this would have been very out of place. I asked the teacher as quietly as I could if I could have said Mars bar because ‘I have diabetes’ and was greeted with a yes straight away. I tried to conceal eating this as much as possible from the rest of the group and seemed to succeed in doing so. This doesn’t seem like a lot but for me it signified difference. I didn’t want to be different. I wanted to be a normal 11 year old!

Fast forward a few years and I struggled during my teenage years with T1. I thought I was invincible and that it wasn’t something I needed to be concerned with. I very rarely tested, at my worst I did maybe one or two finger prick tests a month at times when I had played football, all other times I would just disregard testing. I didn’t think it was relevant, I didn’t care what my glucose levels were. I did however take my injections and never missed a single one. Before any appointments at the hospital with the DSN I would just make up readings (different coloured pens for authenticity of course!) in my log book and if I felt myself going hypo I would just eat, usually chocolate as we were told that was good for hypos then or Lucozade tablets which were very similar to the Lift tabs now. I recall one poignant day was actually on a family day trip to London, I would have been about 13 years-old at this point and we were in McDonalds having dinner, my dad had ordered a selection of items and we were to take what we wanted from the table in the busy upstairs seating area. I went to the toilets to do my injection only to find that they were out of order. I went back to the table and just sat down, I didn’t take any food and started crying. My dad was asking me what was up, but I didn’t answer, I continued crying and was very upset. I had nowhere private to inject so therefore made the decision that I would just not eat. I was that insistent on keeping my diabetes a secret I wasn’t prepared to sit in a restaurant and allow people to see me doing an injection, that’s not normal, or so I thought aged 13. Jumping ahead slightly here, I later found out much later that a lot of my injections were almost a waste of time anyway as I was injecting into non-recommended sites on my body. Looking back, I would imagine I was high (mmol above 10) for a majority of the time. If/when I did do an injection into a ‘good’ site this would bring me back into range as I seemed to be injecting quite a large amount of M3, way more than what I needed in reality, 40 units twice a day. In today’s MDI terms that worked out to be 56 units of slow release a day and 24 units of fast acting…far too much insulin for a skinny teen!

I didn’t want to be seen as different, I hid T1 from my life as much as I could, I would only ever inject in private and didn’t want to know about it as much as I didn’t want people to know I had it. This really was a complete car crash in how to manage Type 1 Diabetes.

In my late teens and early 20s not a great deal had changed. I was still hiding my diabetes as much as I possibly could, and it was still affecting my life in a negative way. I would tell anybody who absolutely needed to know that I was Type 1 such as employers but apart from that I was still very shy and reclusive about talking about it, showing any sign of it in public or acting on it in public. I have way too many hypo stories from this age bracket and I’m going to explain a couple of the most ridiculous. I say ridiculous in the sense of looking back now and realising how different things could have been had I been more open about having Type 1 Diabetes, of course at that age I still wanted to be seen as ‘normal’, I was just the same as everybody else….I was invincible! Mentally I wasn’t strong enough to accept I had diabetes. When I was around 19 years old a good friend of mine was managing the local Domino’s Pizza, he’d offered me some delivery work at weekends which was ideal for a bit of extra cash. I was getting on fine with these deliveries but recall one specifically. I was driving to do the delivery but suddenly realised my glucose was dropping very low and very quickly. I never carried any hypo treatments with me in those days, I didn’t want to be different and have people question why I was carrying sweets or glucose tablets. I was struggling to find the address for this delivery because I was going hypo and having no treatments on me the only option, I had was to start eating the delivery myself. I tucked into some of the breaded chicken wing type things which really are a terrible hypo treatment as they’re a very slow release carb and that’s just on the breaded part…I had no other option though it was a case of needs must! I waited around for a little while, found the address and delivered the food, I don’t believe any complaint was made about the box of chicken wings being a few short! Looking back that was an utterly absurd moment for myself as a human, I could have dealt with that so much easier if I’d had hypo treatments in my car or on me, still fighting that mental battle of not giving diabetes the respect it needs of course I didn’t take that easy option. Going into my 20s I still had battles with myself against diabetes. It became a battle, me verses it. I’d have hypos on nights out and am incredibly grateful to the wonderful group of friends I have around me as I’ve been helped on many occasion, I’d have hypos during games of football, I’d have hypos during work, to put it simply I could have a hypo any time through lack of care. It was type 1 diabetes that ‘thing’ I refused to accept. I’m sure during these times I had many, many hypers (high blood sugars) too but of course these are less noticeable and as I wasn’t prepared to give diabetes attention, I wasn’t testing so I wouldn’t know what my levels were. In my head I thought the way to ‘win’ verses diabetes was to simply ignore it! I’m very sorry to say that on three or four occasions I’d had hypos where ambulances had needed to be called and paramedics would ‘save’ me. I always apologised profusely to them once I’d come round and felt very guilty that tax payer money was being wasted on me purely because I wasn’t strong enough mentally to accept I had a condition which needed care from myself.

Scott Waving
In my mid 20s I had attended the regular diabetic retinopathy screening (photos to look for potential nerve damage in the back of your eyes) at my local hospital and later received a letter to say that I had the very early stages of retinopathy. This was my first encounter with any potential complication from diabetes and I became very worried. My eyesight has always been very good so to receive that was a huge shock and a big wake-up call that I must now start taking care of my diabetes. Losing my sight at such a young age was something I didn’t even want to consider. I did some research online and spoke to some other T1s I’d found online who had had the same letter and was advised that it was nothing to worry about too much as it was a generic letter sent if you had even one slightly enlarged blood vessel in the back of your eye. All you can do is keep good control and things shouldn’t progress any further. This was my first engagement with the Diabetes Online Community (#GBdoc #doc) and I was so pleased that I’d done that. This was the first time I’d ever had any contact with any other person with Type 1 and it had helped me a lot, talking about diabetes was something I’d never done before.

Just after this I’d seen posts from a guy called Chris Bright looking for people who were Type 1 and also played football. This was ideal for me as I met both criteria massively. I was a Type 1 diabetic and a football nut! I’d messaged Chris a few times and discussed his plans with starting TDFC and was thrilled when there were enough people and interest for us all to meet in person over at the now base, University of Worcester. I was quite nervous and really wasn’t sure what to expect but set off early morning and got myself over to Worcester. There were around 19 in attendance and after some introductions in one of the meeting rooms we got into the sports hall and began a well-coached session. Other than a work colleague from my early 20s I’d never had a conversation with another T1 before let alone played football with one! This isn’t an over the top saying but this day felt like the first day of the rest of my life. I’d had so many conversations with so many different people about diabetes, something I’d never ever done before. I was no longer alone, I had a support network, there were other people out there just like me, they loved football and also had Type 1 Diabetes. There were also some sections of the media in attendance and I’d ended up doing an interview for the BBC which later appeared on their Facebook page! In the space of a day I’ve gone from seeing diabetes as the enemy, something I’d let hold me back in life both mentally and physically to engaging with it for the first time and speaking openly to a TV camera & journalist regarding it! The clip itself has had over 9,000 views which still shocks me to this day, you can catch it yourself here – https://www.facebook.com/bbcherefordandworcester/videos/2003662723039459/

Scott in Sofia

Driving home from that session I felt so infused, I’d learnt so much, met some great people and taken in so much information about how I can manage my diabetes better. This started an overhaul for me with the condition. I was still on the mixed insulin, the same stuff I was given on diagnosis day 18 years ago and had now seen first-hand that life would be so much better changing this. I did this and noticed a difference immediately. My control was better, I was aware of new technologies to track blood glucose which made it easier to track hypos and generally manage my condition better. I genuinely could not speak highly enough of what this session did for me. For the first time ever, I was comfortable being diabetic. I would inject in public, I would talk and engage about the condition rather than just ignore it, I would seek to improve wherever I could. Anybody new coming into my life I would make aware very quickly that I was a Type 1 Diabetic, this really was a watershed moment for me. I’d now taken control of a condition which for many years had completely taken control of me.

We had further meet-ups and training sessions with The Diabetes Football Community and I loved these sessions, great friends were made amongst the group we and we all loved the fact we were in the company of other Type 1s. We were lucky enough to be able to represent the UK at DiaEuro in 2018 and 2019, I was very fortunate to be selected in both of these squads and that for me was incredible. I was now being selected on a national level for an international sporting competition for people with Type 1 Diabetes. Three years ago, I refused to accept I had the condition, now I’m representing my country with it! Spending a week in Bratislava in 2018 and a week in Kiev in 2019 with the squad competing for the UK helped my mental health massively. I was with other T1s 24/7, seeing how they lived their lives with the condition, what could I learn, what could I do differently as well as playing futsal and having a lot of fun.

To summarise my relationship with Type 1 Diabetes since getting involved with TDFC would be quite hard to put into words. I love football/futsal but it’s completely changed my life for the better regardless of the sport. I’m happy injecting anywhere now, I’ve done injections on the Tube platforms in London, I’ve done injections on planes, I’m completely open with everybody I know and meet about my diabetes and I discuss my diabetes. Friends I’ve had for 10-20 years plus have also commented on what a positive change it’s been for me. I’ve even had the privilege of meeting a younger Type 1, Ollie Carr and having a really good chat with him and his mum about the condition. If someone had told me four or five years ago I’d be publicly speaking about my diabetes and going around others houses to do the same I’d be shocked, I’m so pleased this happened though. It felt incredibly fulfilling to pass my knowledge and information on how I manage T1 and sports to a young family.

Scott with Ollie
I’ve met many other T1s through the online community and also been involved in some T1 running events which is something I’ve really gotten into over the last year. I took part in an attempt via Paul Coker and OneBloodyDrop to break a world record for the most people with Type 1 Diabetes at the Swansea Half Marathon, I somehow finished the first finisher out of the Type 1’s with virtually no specific running training and this gave me a real boost to take up running more seriously. I’ve ran with other Type 1s outside of that event and met some other amazing people through running (as well as ran with amazing people!), my diabetes has never been so well controlled because of this too. If I’d never got involved with TDFC I’m not sure I would have taken up running too so it’s another massive positive for me.

Scott in Copenhagen
To sum up I’m proud of who I am now, I’m proud that I control the condition rather than it controlling me and I’m very happy to have met so many amazing people through TDFC. If it was not for these people and having that community, I’m not sure I’d be here today. It’s given me opportunities I never thought I’d have but most of all it’s made me a better, healthier (both mentally and physically) person and that for me is absolutely priceless.

It’s good to talk.”

Rob Fletcher: A recent Diagnosis Story

I’m Rob Fletcher, and I wanted to write down some thoughts from the beginning of my diabetes journey. I see a lot of people (especially with-it being Diabetes Week recently) sharing their long-term experiences and what has changed for them in how they manage themselves and their condition, but very little from people who are just starting out on this. It may be because like I did, people think they don’t have a lot to share, but maybe that is what needs sharing sometimes. So, here’s my journey so far (I may get carried away and make this into an essay – I’ve never actually put this down anywhere).

In the summer of 2018, there were signals that I didn’t pick up, they may have been related to diabetes, they may not (and I’ll never know for sure) but they were some of the tell-tale signs. I needed the loo a little more regularly and long drives were really hard to manage due to toilet breaks. However, it was that autumn when things got a bit more serious for me.

I am a primary school teacher, and in September 2018 I started to feel exhausted after every day. This felt almost expected, autumn term is tough, and I had a few big school events I was responsible for organising and running. I was 31 – maybe it was just a sign of getting old, maybe I was working a bit hard, maybe it was working with a different group of children – I am excellent at finding excuses for things, especially if my excuses mean that ‘nothing is really the matter’. As we rolled into October my half an hour walk to work was taking between 45 minutes to an hour. I was starting to get little cramps and I needed the toilet a lot, I could rarely make it through a lesson. At this point I no longer thought it was stress but maybe a urine infection or a virus of some kind. My wife was telling me I should go to the doctor, but I guess I didn’t want to hear what they may say so I convinced myself that I would be fine, my parents wanted me to go to a doctor but I palmed them off with my self-convinced nonchalance.

tdfcblog3

My vision had become blurred, it felt like I was walking through treacle, my urine had begun to smell so bad that I believed we might have a problem with our drains. I felt awful. I had a job interview in this period, so the fact that I couldn’t stop sweating must have been down to my nerves right? On October 10th (My school was doing Book Day), dressed as Fantastic Mr Fox, I was teaching sat on some cardboard boxes at the front of my class, I couldn’t find the energy in me to stand up, and this was unlike me – I love to throw myself into my teaching and around my classroom. My TA at the time noticed all this and got the assistant head to come who quickly sent me home. Even at this point I was in denial, “I’m sure it’s nothing!” I told my wife as she went to work on Thursday morning, she told me in no uncertain terms that if I didn’t go to the dr that day there would be trouble! I got my appointment and off I trudged.

The dr gave me a urine test, took one look at it and told me that he normally would say that he thinks it could be this, but in my case,  he was absolutely certain – “You have diabetes.” I was walking distance from the hospital so I trudged off round the corner explained who I was (the dr called ahead) to reception, called my wife, and before I could sit down they called me through.

tdfcblog2

The next part of this feels very blurry looking back. I remember my wife arriving, and I remember all the staff being very concerned, I had blood sugars of 37 and ketones of 7, I was in DKA. The hospital staff told me they hadn’t seen someone with my bloodwork conscious before. I remember my wife looking scared.

tdfcblog4

To cut the scary part of this experience short I spent 3 days in hospital getting my sugars settled and learning how to inject myself and check my levels and generally how to manage type 1 diabetes. Then I started what feels like a totally different phase of life. Genuinely nothing seems the same.

 

In terms of diet I changed very little, I had been a vegan for about 10 months at this point, the dietician told me I didn’t need to counter for most of my diet just processed carbs and root veg. I changed out white potato for sweet potato, white rice for brown rice (the internet said it was a good idea) and I went about managing what I knew was the rest of my life. I recall people saying they wouldn’t be able to do it, or that they were very surprised with how well I was taking it, but for me I didn’t have a choice so I may as well do it in good spirits and determination. There were times I got it wrong, big nighttime hypos, pizza (that’s a mad one! I still don’t know how to handle pizza) there were frustrations, there were sore fingers but generally I got on with it.

I think it was as New Years rolled around that I started to feel the mental health effects of a life changing illness. I felt guilty about what my wife might have to go through (I think I still do a bit), I felt lonely, but I didn’t want to go and sit in a support group. I didn’t want to feel different, but I did feel different – every little head rush, every pins and needles, if I was tired or a bit giggly all felt like ‘that’s diabetes’. I became nostalgic for times before my diagnosis. I had got to thinking about playing football again, partly as nostalgia (I did well as a kid, then had played off and on since) but also to get back my fitness – this felt like something important as a diabetic.

It was by searching for diabetic football I got put in touch with Bryn who had just set up TDFC London playing futsal (I had never heard of futsal before – but I was up for learning). It has been, without doubt, the best part of being diabetic for me. I gained a ‘support group’ in London that was actually just a group of guys playing futsal, and I got to learn how to be a goalkeeper again (which I love). I’m quite shy and not ‘a lad’ so I kept myself back a bit from the group but took on as much information as I could, then the opportunity came to train with the UK diabetic futsal squad in Worcester. The car journey up 4 of us spoke the whole way about troubles, shared experiences and advice with each other. This and all of the future journeys was another chance to get to know these brilliant men and to learn about my condition. On top of that I got to play futsal at an even higher level. Chris Bright has to take so much credit for starting TDFC and putting together this incredible team of guys who care as much about each other as we do about futsal.

It was at one of the UK camps where I realised how far I had let my fitness slip. I love to have a target, so I booked myself onto a half marathon, raised money for Diabetes UK and almost a year to the day of my diagnosis with type 1 I ran my first half marathon. I genuinely couldn’t have been prouder of where I’d got to in my first 12 months of diabetes.

tdfcblog5

There are so many things I have gained from playing with TDFC: a group of mates, a love of a new sport, better fitness, so much more knowledge of type 1 diabetes, I even got my freestyle libre based on advice from one of those car journeys. I still have frustrations, I am of course still learning – I find it hard to manage my meal spikes, but I am learning.

I have grown as a person due to this illness. I understand more about when people feel in denial, when people feel scared about the future, I feel so empowered when I meet a type 1 child who needs to talk to someone about it – I would never have had this without diabetes.

I am excited for the future: I am excited to overcome my future challenges, I am excited to play futsal (when we can again), I am excited to help other diabetics. Would I choose to have it, absolutely not. Am I scared of it, sometimes. Does it worry me everyday? Absolutely not, I am getting there slowly but surely.

Mo’s Lockdown Story (Diabetes Week 2020)

How’s lockdown been for you?

I’ve found it tough. As someone who is always out and about playing sport and meeting people, I’ve had to outsource all of that to whatsapp chats. Really miss seeing people in person. I guess I’ll cherish the moments more when this is over!!!

How have you managed to cope?

I guess I’m lucky I work in healthcare, so my routine hasn’t changed much. Though being a diabetic meant that my job was a bit restricted which did frustrate me. However, I feel happy to be part of the solution during the coronavirus pandemic as it gives you a sense of purpose and togetherness at work. 

Outside of work, I’ve tried to occupy myself watching stuff, upskilling and playing a really active role in the diabetes online community. I think social networks are priceless at this point in time. The mental support, practical advice, positive distractions, sentiments of encouragement and also knowing you’re not alone are invaluable. 

The diabetes online community has been really good at keeping us informed and occupied. The diabetes 101 twitter initiative is really good. The patient-run facebook diabetes support groups have been really supportive too. 

TDFC has been doing loads as well. I think we’ve seen Dinngy’s nutmeg video more times than I’ve actually seen him kick a ball! Also really enjoyed Chris Bright’s interviews in IG, but mostly appreciated the support from the lads. We’ve also got a lot of new additions and the banter is class! It says a lot about TDFC when we have people from different professions sharing useful advice and tips (both about diabetes and daily life).

Though I must admit my physical health hasn’t been as good as I don’t exercise as much as before the lockdown.

IMG_20190526_115802

Regarding working during this period, were you ever worried or concerned about your personal health? 

What did worry me at the beginning was the lack of clarity on shielding and social distancing for diabetics. 

Fortunately this got better over time. Also within the healthcare sector, advice was changing everyday as new evidence and guidance came out. 

I took a very cautious approach to protect me and family. My managers were very supportive which was a bonus. 

Fortunately my diabetes team is very good and so it was also reassuring to know that they were only a phone call away if I needed them. 

The only real worry was the constant change and adaptation. However I learnt to appreciate that this was brand new for everyone, including the experts. I therefore decided to step back and take it day by day. 

How has it impacted your diabetes?

We know everything from the weather to the mood you’re in has an impact! From a physical point of view, I’ve had to up my insulin requirements as I’ve decreased the amount of exercise I do. I’m eating out less, so I can plan meals better, which has helped.

My sleep patterns have also changed, so meals are at different times. I’ve had to increase my insulin to carb ratios at dinner time to compensate.

The month of Ramadhan started in lockdown. I understand this is your first year fasting in your life. How has that been?

Firstly, I just want to highlight that current medical advice does not recommend fasting if you’re  a T1 diabetic as the risks of hypos, DKA and dehydration are a lot higher. Having said that, I have an artificial pancreas system and am taking part in a voluntary trial. I wanted to appreciate the sacrifices people make, remember those less fortunate, see the health benefits and also help improve diabetes care by providing my data.

I’ve really missed the social aspect of it, as I used to volunteer during the month of Ramadhan and also spend loads of time with friends in the evenings.

It’s been challenging physically too, as I’ve stopped all sports to prevent massive variation in my blood glucose which may cause me to break my fast. Fasting whilst playing sport may be something I can work on towards the end of the month, or maybe next year!

In my 28 years as a T1, I’ve never fasted for more than a day before. So far this month, I’ve had to break 2 fasts as I hypoed. They’ve been good learning points and I’m slowly adjusting my ratios and insulin. The first week was really tiring, surprisingly it’s gotten better over time, even though the fasts have got longer as the days have gone on. 

A few months back I had a really good discussion with Scott Burrell about how long fast acting insulin lasts in your body. I’ve learnt a lot from people’s experiences and have tried to implement them into my management.

Overall good so far, but I think I’ll only continue if it’s safe to do so. I’m extremely grateful for the tech we have now, the support and the expert advice that’s available.

Thinking forward, are you worried about how society will pick up after lockdown?

I always take the mindset that you should only focus on what you can influence. Our world has changed and will continue changing as a result of the pandemic. The things I can’t wait for are getting back into kicking a ball, meeting up with friends and family, travelling and eating out.

I think the biggest thing we’ve learnt is how important we are to each other as a community of human beings. I hope the help and support people have provided carries on after the lockdown.

 

Managing Type 1 Diabetes for Football & Futsal in 2020…

The new year is always a chance to take a fresh look at things and alter the path or journey we’re on…. At the start of every year I try to look at the context I’m surrounded by and set myself new goals or challenges which drive my motivation for what’s ahead.

But what I thought I’d do, to help some of you out there who might be thinking about starting a journey with Football/Futsal & Type 1 Diabetes or taking it up a level, is give you some insight around how I manage my condition. 2019 was a pretty good year for me with my sport so it’s probably a good time to share with you some of the ways I go about trying to get the best from my glucose levels to allow me to play to the best of my ability.

So I thought I’d outline some of the ideas, most of which I shared at the #SporT1Day conference, to hopefully provide some insight and support to anyone out there who might need it.

Here’s my general thoughts on what I try to do or think about for my management before any sport or exercise:

  • A plan of how to approach the sport/exercise/game – What type of exercise is it (interval, aerobic, anaerobic etc)? Intensity? Duration? Time of day? Timing of meals? Last Bolus?
  • Consistency of Routine – If it’s working, I keep using it.
  • Good night’s sleep.
  • Plenty of time between pre match meal insulin dose and starting the game (3 hours + ideally)
  • Lots of Testing – As much as you can or utilising a CGM such as the Dexcom G6 which has been the best I’ve used so far. This way you can learn about the effects of types of exercises, intensities, durations etc on your glucose levels.
  • Small adjustments of insulin & carbs to try and find the right glucose level for your best performance or for you to just enjoy it.
  • I aim for 7-8 mmols throughout the duration of any game to try and achieve my best performances.
  • Having my quick acting hypo treatments and insulin available and accessible for any adjustment I might need.
  • Consider the weather… Is it cold or hot? They usually play a part in how our glucose levels respond.
  • Am I in good general health? Have I been ill recently? Can play a part in less predictable glucose levels.
  • Keeping on top of my hydration… I find my levels drop more quickly if I’m dehydrated.
  •  Stress Levels – Do I feel nervous? Am I calm? Sometimes bigger games cause a bigger adrenaline spike in glucose levels. Do I need to account for this?
  • Have I fuelled up well before the exercise? Have I eaten enough calories/carbs in general for the energy I’m going to expend.
  • Always consider how much activity you’ve been doing around the particular sport or exercise you’re about to take part in, because the more active you are, the more sensitive to insulin you are!

Below are some of the generic details about my day to day management…

• My daily carb intake is around 180g. ( + or – depending on activity levels). I’m on MDI and CGM, No pump.
• Carb Ratios are roughly 1:15 g breakfast, 1:10g lunch, 1:7.5 g for dinner.
Much of what I’ve said above is linked to a generic way I tackle my Football or Futsal but there are some subtle differences I employ between the two because the intensity of the two sports is very different. This has a drastic impact on the reaction of my glucose levels and the way I manage them during and afterwards especially. So I’ll show you some of the key differences below:
Football (Example is preparation towards a Saturday 3pm Kick Off)
  • Aiming to be 7-8mmols to start the game and throughout.
  • Ensuring my pre-game meal & bolus is 3 hours before kick off.
  • Reducing pre-game meal bolus by roughly 10%.
  • Half time testing and adjusting based on level. If I’m below 9mmols I’ll take on 10g of carbs to cater for the second half dip and even more if my levels are below 5mmols. These choices very much depend on length of time you’re going to play and how hard the game is. If it’s a tough game with a lot of chasing then I sometimes have an extra 5-10g of carbs. If I’m over 13mmols I’ll take on a unit of insulin.
  • Post game meal I reduce my bolus by 25-50% depending on how much I’ve played and the intensity of the game.
  • I try to make my post-game meal both full of protein and carbohydrate to help with the recovery of glycogen stores and muscle growth/repair.
  • I will have a bed-time snack of 10-15g without a bolus to try and alleviate the nocturnal hypo risk. (If I’ve played a whole 90 minutes, I’ll scale all of this back if I’ve played less than that)
  • I don’t adjust my basal insulin because I use Tresiba, which is an ultra-long acting insulin and this will have no effect on my risk of a nocturnal hypo.

Futsal

  • I like to start the game at 5mmols if I can, because despite being lower,  I’m still likely to need a small bolus before the game or at half time to manage my levels rising as a result of the higher intensity and expected spike.
  • Because of the roll on, roll off substitutions within Futsal, there’s a lot more opportunity for adjustment. So I always come off from the court and immediately check my CGM and look for the trend arrows and glucose level.
  • I always tend to carry a bit of short acting insulin in my system because for me within Futsal, knowing I have frequent breaks and the likely impact of the intensity (levels rising), I’d rather be lower and taking on some glucose, as it reacts quicker than my insulin, than being too high and waiting for my insulin to kick in. The important factor for me is having a glucose level which allows for performance, not the number of adjustments I have to make.
  • I will always have a protein bar/snack post game of around 20g of carbs because I tend to have a sharp drop in my levels post game. Probably as a result of carrying short – acting insulin during my sport and the intensity.
  • I don’t make any bolus adjustments post – game to my meals. Again I’ll eat a meal heavy in protein and carbohydrate.
  • No basal adjustments as a result of using tresiba.
  • If I want a bed-time snack I’ll bolus for it with a small reduction of 25%.
Wales vs Northern Ireland - 2019 Home Nations Match 1 -62
I really hope that this is a useful post for people out there trying to tackle football or futsal for the first time, or who might be finding it challenging currently. If something from this article helps someone out there get more from their performance or just allows them to enjoy it more I’ll be happy!! Please give it a share if you can because I’m sure you’ll know someone who may also find this useful.
I’ve also added my slides from the #SporT1Day Conference to the bottom of this post if you wanted to see what I shared on the day, which also has much of this detail in.
Thanks for reading and I wish you all a happy and healthy new year! Please also be aware of the below disclaimer.
Chris
Disclaimer – Always remember that this a personal perspective and is not endorsed by a medical professional. So any advice or ideas you take from this post is at your own risk and should always be cleared by your diabetes team. 

Chris Bright Presentation 2019 ( #SporT1Day Conference )

A look back on 2019 at TDFC…

It’s been some year…

We’ve had some incredible things going on within the TDFC family during 2019 and I’m immensely proud of what we’ve achieved together.

For the last couple of years I’ve written a blog to try and summarise the progress that we’ve made during the previous year because as much as I firmly believe in focusing on the present, to ensure we don’t stand still, it’s also important to celebrate and remind ourselves of the successes along the way.

Firstly, I want to say a massive thank you to everyone who helps to make this community what it is. Those who’ve stepped forward to lead on particular projects and areas which needed support I’ll never be able to thank you enough. You know who you are and I hope you’ve enjoyed the opportunity to take our community to the next level. We don’t stop there though…. 2020 has so many exciting ideas that we need our current team and others to step forward to make it happen.

Before I start recapping, I’d like to say a big thank you to our sponsors Dexcom, Lift, JL property solutions ltd and our close partner the University of Worcester. Without your support none of what we’ve done in 2019 would’ve been possible. Thank you for everything and I hope we can continue what we’ve started as we enter 2020 and the next decade.

Now, I’ll try and talk about some of the big moments in order of how they happened throughout 2019….

So, to kick it off we had the beginnings of TDFC London. It is our affiliated project that takes the ethos & ideology of what TDFC is all about and localises it to the area of London. Having come up with the idea for this alongside Bryn during DiaEuro 2018 it was amazing to get this off the ground in February 2019. This was the first ever all type 1 futsal or football team to take part in a mainstream Futsal league when we entered the London Futsal League in May 2019. An amazing statement which I know the boys are extremely proud of. It was a special moment seeing the lads take on this enormous challenge. I was just delighted I could be a part of 2 of the 3 wins TDFC London picked up in their first season! The first time I was involved in a win was momentous, not only because of the statement it makes, but because we did it against another disability team. We played against a deaf team, which was another bit of history, having our 2 teams battle it out in a mainstream futsal league. It’s been a fantastic start for this project and as the numbers of people interested continues to grow it’s looking like a really exciting 2020. We must thank Havas Lynx for their support for the team in 2019 as we got the team off the ground. Make sure you visit our “Find Your Local Community” page if you’re interested in what they’re up to.

Alongside delivering our own projects we try our best to network at some of the diabetes events and projects across the country. We’ve grown the awareness of our community by attending these events and in 2019 we tried to ensure that we continue to reach further and engage with members of the community interested in our journey. Having our stand at Talking About Diabetes (TAD), the rise of the machines 2 (RoTM 2) and EXTOD (Exercise for Type One Diabetes) allowed us to do just that. It’s always amazing to get a feel for what’s going on in the community that supports us. We’ve been lucky enough to exhibit and share at conferences like these for the last 2 years and we’re very grateful for every chance we get to do this.

IMG_1319

With the unique nature of some of the work we’ve had the pleasure of creating, we’ve also had more interest than ever in coming to take a look at what we’ve been up to in 2019.  This has led to some amazing awareness for The Diabetes Football Community which we’ve all been incredibly proud of. I just want to mention a few which I think have captured the reason we exist, been seen by most people and have probably resonated furthest with the community.

When we spoke with Jonny Labey in the early part of 2019, it was a chance to show him what we were up to for his new Know Your Type vlog. So, we invited him along to one of our UK Diabetes Futsal Training days. Jonny is a former Eastenders actor, West End performer and was recently on The X Factor Celebrity series but the most important thing is obviously that he lives with type 1 diabetes too. We didn’t just get him in to film what we were up to and interview myself and the team, we had him playing as well!!! Jonny was top class on the day and got stuck into the friendly match we had planned. You can see the feature Jonny created on the below link:

https://www.youtube.com/watch?v=TjAd0vXs5Gg

Then as we headed towards our big summer project, which aims to inspire and raise awareness of our condition we had another bit of great news in showcasing our work. So as our UK male Diabetes Futsal squad were preparing for Kiev, Ukraine and a week away at the DiaEuros (European Futsal Championship for people with diabetes, www.diaeuro.org), the local BBC Midlands Today team got in touch to come and feature the squad’s final training session. It was our first exposure on the Television…. I was made up for our project and all of the team involved. Showcasing what people with Diabetes can do in the form of our Futsal team goes some way to disproving many of the stereotypes and stigma which surrounds the word Diabetes, so to have our story shared to a mainstream audience on this scale was incredible. If you want to check it out look on the below link:

https://www.youtube.com/watch?v=9SHg-Cobx-Q

Also, during the final days of build-up to DiaEuro we had the honour of having 2 England Cricket Legends announcing our squad for us… Again another fantastic piece of awareness for TDFC during the Cricket World Cup 2019. I know some of the lads were big cricket fans so to have these guys read out their names to represent the UK’s All Diabetes Futsal team was a huge honour for them before they’d even kicked a ball. A huge thank you to Michael Vaughan and Jimmy Anderson (And Tim Peach for organising it!) for doing this for the team and the project, it means a lot and will be something we all look back upon with our smile on our faces…. check it out below:

https://www.youtube.com/watch?v=EsdsaqKzeSA

Then of course there was the experience of the tournament itself…. What a spectacle it is for diabetes. I wish more could be made of the journey, the teams and the showcase for the condition. It’s a special opportunity to represent your country and your condition…. One which I’ve had the pleasure of doing on 2 occasions now and with this team I hope I’ll be able to continue to do so in whatever capacity that is for a good while to come…. Unfortunately, I won’t be able to play forever!!!! I won’t talk too much about it as I wrote down my thoughts on the below blog post, but it’s without doubt one of the biggest highlights of 2019:

https://thediabetesfootballcommunity.com/2019/09/05/diaeuro-2019-perspective-chris-bright-player-coach-organiser/

As we arrived home from the championships, I knew something pretty big was also on the horizon but I was sworn to secrecy for at least 2/3 months prior to it happening…. A big moment for me, a big moment for TDFC but an even bigger moment for type 1 diabetes in sport & physical activity. Sport England in combination with the Richmond Group of charities had decided to create a national campaign to attempt to increase the numbers of people exercising whilst living with chronic health conditions. The #WeAreUndefeatable campaign is the first time in my lifetime I’ve seen a concerted effort to promote people living with health conditions into physical activity (Also the first time I’d seen anyone injecting insulin on TV!). For someone who’s always shared a love of exercise with my chronic health condition, this has been an incredibly long time in coming, but I’m so pleased that the emphasis is there and it’s had a national spotlight. I was obviously incredibly honoured to have been featured in the campaign, to represent Type 1 Diabetes, but for me it’s just another chance to change perceptions, stereotypes and the stigma I’ve faced in sport since the day I was diagnosed. My story embedded within the campaign is just a strand in the fabric of the overall picture of what’s happening. The winds of change are blowing and I believe our work is certainly contributing…. Thank you to all of the #WeAreUndefeatable team for doing such an amazing job with the campaign and my story. I do find it tough to watch… Talking about the pain I felt as a kid gets me every time but this creates the power within the message. My condition hasn’t stopped me from enjoying my sport and nor should it. I hope this comes across. If you want to check out the TV advert you can find it on the below link:

https://www.youtube.com/watch?v=5_yydj6EvAY

And if anyone wanted to view my story as part of the campaign use the below link and make sure you check out www.weareundefeatable.co.uk:

https://www.youtube.com/watch?v=19T9M5944E4

Alongside our own pride in the work we do it’s also been amazing to receive our first award/accolade during 2019… It’s never something you set out to do when you begin a journey within a project like ours but nevertheless it’s incredibly humbling to receive an award in recognition of the hard work the project has put in. Earlier this year we received the Grassroots Project of The Year from the Worcestershire FA in acknowledgement of the impact we’re having across the county for Diabetes in Football. A list of the County’s award winners for 2019 can be found on the below link:

http://www.worcestershirefa.com/news/2019/may/23/the-fa-and-mcdonalds-grassroots-football-awards

Then finally, we had the incredible #SporT1Day 2019 conference held at the University of Worcester. Another massive highlight in the year as we work alongside 1BloodyDrop to create the only conference focussed on type 1 diabetes in sport and exercise, created by people living with the condition. It’s proven to be a huge success with many of the diabetes community and we can’t wait to see where this ends up. It was a fitting way to celebrate World Diabetes Day 2019 and a fitting way to finish up our major projects for the year. If you want to read up on what happened at the conference head to the below link:

https://thediabetesfootballcommunity.com/2019/12/21/what-happened-at-sport1day-2019/

As with anything in life, as much as I want to ensure we don’t forget the incredible things we’ve done I’m also conscious we need to look at the things to come…

On the horizon for 2020 are a number of new ideas and projects to compliment our existing ones. We’re in the midst of starting up our Women’s Diabetes Futsal project led by Katie McLean which will look to mirror our successful Men’s project. We will be finally getting to our Kid’s sessions in partnership with the Worcestershire FA after securing a slot on their new 3G astro turf facility in 2020, as well as looking at a project that moves around the country in combination with the growth of our local community hubs. It’s an exciting time to see where the next turn on this journey of ours takes us.

An incredible 2019 which took TDFC up a notch, and with the help of everyone involved in our wonderful project, we hope to go up another level in 2020. Please keep sharing, liking, retweeting, tweeting, commenting on our work and helping in any way you can, it all helps. If you’d like to get involved in what we’re up to we’d love to hear from you so please make sure you send us an email if you feel like that’s you.

It’s an honour and privilege to be leading TDFC into 2020. Single handedly the best decision I ever made was creating this project and it means the world to have so many people sharing the journey.

Thanks for everything in 2019.

Chris

What happened at SporT1Day 2019…

Well….. Where do I start?

I suppose it’s taken me a little while to get this written down with the vast amount of things on my plate in the last month but we got there eventually!

A culmination of months of behind the scenes work, emails, phone calls, marketing and raising awareness of what we were putting on came to fruition on November 17th. There was no better timing than to host it 3 days after World Diabetes Day as a statement of support for one of the most important days in the calendar.

Before I talk about the event itself, I need to thank the University of Worcester for allowing us to host the last 2 SporT1Day conferences within their facilities. I have a brilliant relationship with so many people at the university and their continued support for me, the conference and The Diabetes Football Community is incredible. I will always have a strong affinity to my university for how they’ve encouraged & facilitated the projects we’ve come up with and I just hope I represent their values & ethos in the work I now do. A huge thank you must also go to Dexcom & Roche for sponsoring the conference and supporting with refreshments & the programme.

I also must say a huge thank you to Paul, who shares this joint vision to drive education in sport for people with type 1 diabetes. A mate of mine whom I’ve been able to co-create something special alongside. Thank you buddy… We’re on some journey with this and I can’t wait to see what we can do next.

But lastly before talking about the day a final thank you to the incredible speakers, paul’s family and my own family for helping us deliver the day. Without you it wouldn’t have been possible.

An early start for myself, the family and one of our speakers Alex Richards, as we made our way down to the university. I was definitely less nervous than the first time round after having the experience of last year’s conference already under the belt. After setting it up the best we could based upon the volunteers and resources we have available for this kind of event we were all really excited to start seeing people arrive.

As soon as you see people arriving with their tickets it’s an incredible feeling to know that all of the planning you’ve put in place is about to happen but it’s also the moment when you realise there’s a show to put on.

We kicked off the day with the incredible Professor Partha Kar, who really needs no introduction. An amazing man, who through his determination, passion and ability has helped drive a transformation in the way type 1 diabetes is both viewed and supported within the NHS. Partha gave us a talk about the focus and direction the NHS England Diabetes programme is heading in whilst demonstrating the incredible developments and uptake of technology across the country. Having someone of Partha’s credentials attend the conference was a huge compliment and I really do owe him (He’s got me down for a couple of beers the next time I see him!). @parthaskar on Twitter

We’d planned the day to give our audience a chance to take on the recommendations and thoughts of the healthcare professionals at the beginning and end of the day. We felt this would be a good way of allowing people to pick up some tips before listening to some of the experiences of our athletes and people living with type 1 diabetes throughout the rest of the day.

After the excitement of Partha’s opening we then had the pleasure of having 2 of the leading healthcare professionals in exercise and type 1 diabetes within the country, whom lead on the EXTOD programme (www.extod.org), talk to us about the science of managing blood glucose levels through particular types of physical activities and sport. Dr Alistair Lumb and Dr Parth Narendran have been imperative in driving attempts to improve the knowledge of other healthcare professionals across the country through EXTOD and having them share the knowledge and framework at SporT1day was a privilege. You can always tell when a topic and talk has captivated an audience by the response at the end…… Let’s just say we could’ve been there a lot longer with the questions. A huge thank you for coming along guys and I look forward to working with you in the future on some exciting ideas! @DrAliLumb & @parthnarendran on Twitter.

Following an opening of theory from the healthcare professionals we started to delve into some of the experiences of those living with the condition, who are putting this knowledge into practice day in and day out. So first up was Brian Hoadley or Type1Bri ( www.type1bri.com). A really top bloke, who encouraged me to share my journey and who had a huge impact on me personally as I became aware of the diabetes online community. He’s been a great friend of mine who’s always supported the work of TDFC from the very beginning. It was an honour to have Bri share his own inspirational journey of running the London marathon less than a year after being someone who didn’t do any exercise. To do that in under a year is epic for anyone, but made even more special and inspiring when you’re able to do it with type 1 diabetes. Bri shared the journey he went on, how he did it and the effect it had on him and his diabetes. A brilliant talk and achievement from Bri. So pleased we all got to hear it. @Type1Bri on Twitter

IMG_1370

Next to the centre of our SporT1Day stage was Alex Richards. A very good friend of mine who’s work in sports psychology has taken a special interest in the experiences of people with type 1 diabetes in sport and exercise. Alex gave us a talk about perfectionism and it’s challenges to both athletes and those of us living with type 1. It was very poignantly linked to the goals we set ourselves and how most of us look towards outcome goals rather than process goals. Interestingly, those outcome goals are often out of our control to some extent, as winning trophies, representing teams or qualifying into tournaments relies on coaches, other players and beating the opposition which you can’t actually impact upon. His talk fascinated me having spent much of my life with this idea of perfectionism rooted inside of me and my focus on outcome goals, that I couldn’t always impact upon. Top work Al and I think there was a large proportion of the audience desperate for a chat about the presentation and keen to grab hold of the slides afterwards! It says it all about how interesting the talk was. @alex_acr on Twitter

IMG_1351

Then we moved onto the incredible Melanie Gray. Now Mel will always have a special place in the history of TDFC as she was someone I spoke to when I was thinking about putting myself out there to share my individual experiences as well as creating TDFC in the early part of 2017. So to have her along to speak at our joint conference with 1BloodyDrop was an honour. Mel has been an inspiration to so many within the diabetes community as an international sprinter with the condition who has gone onto share her story widely through her renowned blog, advocacy work and now her role as a dietician. As an experienced speaker with a vast knowledge of her sport and how to manage type 1 diabetes within it, it was a brilliant watch and listen. I think anyone in the audience on the day would’ve enjoyed the insight surrounding Mel’s management which complimented talking about her work, which has had her featured in a nike campaign during the London 2012 olympics, seen her become a London 2012 olympics torch bearer whilst also developing her own peer support group Blue Circle Diabetes.  If you want to take a closer look at what she’s up to head to www.lifesportdiabetes.co.uk to check out her blog and thank you Mel for supporting our conference.

IMG_1353

We then had a chance to take a breath! It was lunch…. Now for everyone else it means take a breath and grab some food but for me, paul and a couple of the speakers who’d already spoken it was an opportunity to speak to members of the audience. So lunch went in the blink of an eye but we had so much more to come….

Our afternoon had a heavy tinge of football within it as 2 of the UK Diabetes Futsal squad shared their stories about getting involved in TDFC and their feelings towards the team. Having Tim and JT, share their thoughts so publicly about how TDFC has helped them through their involvement in our team was pretty special. I didn’t tell them what to say either!!! So for them to show their overwhelming support for what we do and showcase it so brilliantly to the audience was amazing. The power of peer support for people with chronic health conditions should never be overlooked and I firmly believe that its power can drive holistic improvements for people with conditions like type 1 diabetes. Listening to Tim and JT certainly made me feel that this is the case. After they’d both shared their stories it was a chance for me to briefly talk about how I manage my condition around my sport, some of the techniques and ideas I’ve adopted, as well as showcasing what TDFC has been up to and what’s planned for the future. To be honest, it was quite nice to just have a small part in the talking side of things such was the level of organisation required! Hopefully my small snapshot in the day was a worthwhile 10-15 minutes amongst the stars of the show. As we grabbed our coffees, we readied ourselves for Craig Stanley to take to the stage. If you wanted to hear more on JT or Tim’s journeys you can follow them on twitter under @Tim_Ward07 & @JonoTyrrell

I’m biased as a Football/Futsal player but Craig (Staners) talks so honestly and openly about his journey in professional football with type 1 diabetes that it just fascinates me every time I’ve heard him share it. Professional sport and the “elite” are supposedly supported by infinite resources, in the way of money, people and specialists, but Staners shares a story that despite his day job being to play in front of thousands of people playing Football, the support he had throughout his career was limited. I’d always felt this with my experiences in the part time game but you just assume that the added professionalism would improve the experience that players with type 1 diabetes had. Instead talks like Craig’s continue to demonstrate that mainstream sport still hasn’t got it right from the grassroots through to the elite for people living with chronic health conditions. This is where I hope campaigns like the #WeAreUndefeatable campaign created by Sport England goes some way to addressing the issues we face. Despite what Staners has faced he’s had an amazing pro career of over 500 appearances, a Wembley playoff victory and having the opportunity to captain the England C team. All of this despite living with type 1 diabetes. He’s a very down to earth guy but what an example he sets for us all. A massive thank you buddy for coming to share your story with us again. If anyone wants to follow Staners on social media you can find him on twitter under @staners6 and on instagram under @staners10.

Our last lived experience of the day came from my partner in crime Mr. Paul Coker. His experience of living with the condition for over 40 years which combines feats of endurance along the way always provides an insightful and inspiring listen. This time we had the pleasure of listening to the story of climbing Mount Kilimanjaro for JDRF with a number of other type 1s. I’ve heard Paul talk a few times but not on this topic with so much depth. It was really interesting to see the impact altitude had on himself and others managing the condition and certainly provided some important insight into how to go about tackling that sort of challenge. Paul’s experiences of Kilimanjaro provided yet another valuable varied talk for our audience whom I’m sure gleaned so much.

Another member of our healthcare profession came to round up the day with a specific view of what it’s like as a diabetes specialist nurse (DSN). Emma Innes talked us through some of the specifics of how we should work with our specialist team, some of the recommendations from healthcare professionals for sport & exercise and how technology is making it easier. Emma now uses her experience in the field to lecture at the University of Worcester for the nursing cohort of students. Her talk helped to remind us all of the importance of working with our healthcare professionals to achieve our joint goals together. A big thank you for sharing your insight for us Emma! You can follow Emma on Twitter under @emmainnes3

IMG_1366

Finally we finished off with a Q&A session for the audience and as I stood at the front with my fellow speakers, providing answers in the best way we could, I knew we’d delivered something special. The engagement, the faces and the thank you’s we received told us that. Now we need to consider where we go from here…. The magic of what we’ve started needs to be built upon and myself & Paul need to go away to think about how we make this grow and work for the future. Nevertheless SporT1Day was an incredible success which I certainly will look back upon with a huge amount of pride!

If you’re interested in where we go next make sure you follow @SporT1Day on twitter for updates and news from the conference. Our plans are always ongoing and if you think you’d like to see us in a different part of the country or you have an idea you’d like to share with us, you can contact TDFC, 1BloodyDrop or the SporT1Day twitter account to get through to us.

Thank you for all of the support with our conference & the wider work of TDFC and I hope you all have an amazing Christmas!

Chris

Live. Play. Inspire.

World Diabetes Day 2019 – Chris’ Message

A day that I remind myself to thank the great Sir Frederick Banting for the gift he gave me, a chance to continue living my life despite being diagnosed with Type 1 Diabetes. His co-creation of Insulin in the 1920’s has saved millions of lives, including my own, from a life cut short by this condition. This day is about you my friend, as we celebrate your birthday and the gift you gave us.

With that extra time you’ve given me, I hope I’ve done you proud. I’ve done my best to defy the pitfalls of Diabetes and use the experiences I’ve worked hard for and been fortunate enough to have, to help others that share this condition with me. I feel that your gift to us all is one I won’t overlook or take lightly, and if I can gift anything back to others like me, then I will at least be living in a way which befits your legacy. I know I’m lucky I’m still here, with the developments of science, and in particular the incredible NHS, to thank for the life I’m able to live in 2019. Others round the world still aren’t as lucky as we are here in the UK and I’ll always be grateful for what we have.

Through the work of TDFC, the honour of representing my country within Futsal and my advocacy work for the condition, I hope I do what I can to ensure the time I’ve been given back is not wasted. I’m able to live a life which I decide upon, not my condition, which is all thanks to you, Sir Frederick Banting. There is another person I want to talk about though today…

A man whom I’ve rarely mentioned publicly when talking about Diabetes is my grandfather who also lived with Type 1 Diabetes. He was diagnosed at the age of 21 in 1956 and lived 40 years with type 1 before he died in 1997. 40 years of living with the condition whilst having only the use of animal insulin and without the medical support/devices we have nowadays to help us control it. I think to do that was pretty amazing and even though we met for just a short period in my life, I’m just glad I got the chance. A man with an incredible story, who defied the odds more so than I have in my opinion, that I wish I’d have had the chance to get to know more.  I was very young at the time of his passing and at this point I hadn’t been diagnosed with Type 1. I’m grateful he never saw a day where I was diagnosed with the condition (My Mum is too!) , which had potentially passed on a generation to me, because I know he’d have been devastated. But more than ever I wish he’d have seen the work that has been done through The Diabetes Football Community. In the face of what we both lived with, I’ve tried to tread a positive path, which I’m hoping many others can follow.  I know he will have been extremely proud of this project and I’m sure he’s looking down smiling upon it all from wherever he is.

I wanted to talk about both of these men, whom never knew I lived with Type 1 Diabetes, because of the lasting impact that they have had on my life. A day of remembering Sir Frederick Banting felt like the right time to remember my Grandad too. A day full of positivity surrounding Diabetes that I want to dedicate to them both.

My life now consists of ensuring I do them both proud by ensuring I live a life full of positive experiences, whilst sharing the journey and helping others with the condition fulfil their potential in sport. If I can do that I’ll be a happy guy and I think they would be too. I’ve now lived with the condition half as long as my Grandad did, with this year marking 20 years. I hope by the time I hit 40 years since my diagnosis, diabetes will be something we remembered we lived with not something we continue to.

So what’s my lasting message for World Diabetes Day?

Be grateful for what we have, treat the time we have as a gift and don’t let Diabetes define the way you live your life. See it as an extra hurdle to jump not a mountain to climb.

This one is for you Grandad & Sir Frederick Banting…. I hope I’ve done your legacies proud.

If you want to see an incredibly inspiring story from Katie McLean who’s sharing her story publicly with us for the first-time head to the below link:

https://www.youtube.com/watch?v=8QbZR6alWBw

And make sure you don’t forget to pick up your tickets to #SporT1Day this Sunday at the University of Worcester (17th November 2019)… We still have a few left and you can get your hands on them on the below link:

www.eventbrite.co.uk/e/sport1day-2019-tickets-59520275747

Have a great day everyone and Happy World Diabetes Day 2019!

Chris