I attended my first TDFC session in July following an introduction to the project by Mo who found my Facebook profile on a Type-1 diabetes page & saw from my profile photo that I was a football fan.
Looking forward to the next gathering….
I attended my first TDFC session in July following an introduction to the project by Mo who found my Facebook profile on a Type-1 diabetes page & saw from my profile photo that I was a football fan.
Looking forward to the next gathering….
Guess what, it’s been a weird 18 months hasn’t it, but as the restrictions end and some form of normality returns it was great to get the message from TDFC HQ that the futsal sessions are back on and a couple of summer meet ups are in the diary. Get in!!
As many us will know (especially if you’re a parent or carer) you must wear different heads daily, nurse, best friend, coach, Darth Vader. All of which had to been worn in increasingly difficult lockdown circumstances. Having worn all of these (including the new Key stage 2 teacher head) I was driving down to Worcester for the session thinking I haven’t worn the futsal keeper/skipper one for over two years.
A light bulb moment that almost felt like imposter syndrome, as if I was stepping into someone else’s shoes. I’d felt a little like this going to the first ever meet up back in 2018 when I felt like the old guy who had come for the dads v lads’ game. Believe me that feeling disappeared almost instantly in 2018 and the same in 2021.
The reason why, it’s easy, it is the people. The strength and support of community is powerful. Something you don’t (or I didn’t at least) realise until you’re involved, meeting and listening to others, simply having a chat, a laugh or empathising with the issues they are encountering. The WhatsApp group that all who join TDFC are invited to has been fantastic in keeping in touch with everyone but meeting up with some old and new faces, getting the boots on and simply having a game, that is a life saver.
I have family down in Worcester, so we decided to make a day of the first session and catch up, so the Ward clan turned up on mass at Worcester FA HQ.
The meet up followed the usual routine the hello’s, how are you doing, nice to meet you, take the mickey out of each other and have a laugh (mostly at my lockdown barnet), yes Tob’s I know the barbers are open now but I’m going full Zlatan! 😊
There were loads of new faces and although I didn’t get to chat with everyone it was great to meet you all, apart from Bryn who megged me 3 times, you mate, can stay in Aberystwyth next session!
The presentation and discussion with Chris and Jon that opened the session was a real eye opener with the differing level of access to diabetic support across the country, be that physiological support, CGMs, pumps, and dietary & lifestyle advice offered was frighteningly varied, far from consistent and really not great to see. The tireless work Partha Kar and others are doing to remedy this is vital for people with type 1 across the country.
A special shout out to Mo Ismail, who has been an absolute legend throughout the pandemic and well ever since I’ve met him. His advice and guidance (he’s a qualified Pharmacist and T1D brother working in the NHS) on all the questions posted in the group has been a real source of inspiration and support and the recognition he received during the session is well deserved! Well done and thank you pal from us all.
After the presentation and discussion, it was down to the pitch for the futsal, but first media duties for me and Mo discussing the project with Active Herefordshire and Worcestershire, who have provided us with some great support to get back on our feet. It was great to chat about TDFC and the return to playing and training.
The training was great as usual (apart from the megs) and it’s always nice to learn as well as get chatting to Tom about Goalkeeping and his master’s Studies in the USA too!
I coach academy and grassroots football, so I am on a pitch most days of the week but being out there playing and being coached is such a release, you don’t know how much you miss it.
A nice end to the day was having my picture taken by Chris from Reaction Photography of me with Brighty and my boys all of us in TDFC kit, I think they are expecting to be on the flight to Bosnia now for the next DiaEuro.
It was great to be back to see some old and dear friends and make some new ones. I can’t wait to catch up with the rest of the lads and keep meeting new people within TDFC.
In a thousand different ways the day was a real family affair.
It’s been a tough year for many of us.
The world, what we value, how we see the future, jobs, the economy, sport, social activities, health etc have all been affected this year by Covid-19.
This piece was written to focus on the positive, and is focussed on gratitude 😊
Moving on to where we are now; Diabetes month!
Throughout the years I’ve seen people post images of how many injections they’ve had to endure over their lifetime, images of libre scans, hypo treatments, Hba1cs, the DKA and diagnosis in hospital, how people have overcome their diabetes challenges and all those additional things we have to endure…..just to function everyday.
This year I’ve had a think about what’s important to me, what has helped me keep ticking, year on year, and ultimately has led me to meet up with, and work with some of the most inspiring people I’ve ever met.
The story begins a few years back, sometime in 2017. I had a decent job, life was great on the outside, my diabetes control was awesome, but I was, at the time, not feeling good inside. There were two parts to why I wasn’t feeling great, one was diabetes related.
I was struggling with diabetes burnout. It was something I never knew existed as I’ve had t1 since the age of 2.5, and so not known what life was like otherwise. I guess when “not being okay” becomes a routine, it ends up being normal.
I’d figured out through my understanding of medicine and pharmacy, how rapid acting insulin worked. The bottom line was that I could get away with measuring my sugars less than a handful of times a day, guesstimate doses extremely well, have limited hypos and have an a1c of below 6.5. I could manage exercise well and only really struggled when I went out for a three course meal and desert at a posh curry place.
I couldn’t really see the point of bothering really, even my hospital appointments were pointless. I’d turn up, be asked for my diary (which didn’t exist), someone would have a proper go at me for a bit, then open up my record.
After this point they’d take some time to double check my hospital notes, scroll through my history and say well done. I often felt it was more out of shock than praise. That was it. No “sorry” for making me feel like the smallest thing on planet earth, no “is there anything I can do for you?”, no “how do you manage to dose”, no “how are things?”. Then I’d get an appointment a year later and rush back to work.
One time at work (I work as a hospital Pharmacist) I had a brief discussion with a dsn about care. She asked where my care was and I mentioned the hospital. She asked whether I thought about moving my care to my workplace. I didn’t know this was possible. I thought about it for a bit, and concluded that it would be hugely beneficial as I wouldn’t have to travel back to work by train, saving about 1 hour of my time, once a year.
So I worked really hard to move my care over. Contacted the GP, my DSN and after a while, I got the appointment notification in the post.
A few weeks before my appointment, I was working in a GP surgery, running a clinic that aimed at preventing blood clots. A routine patient came in, mentioned that they were really worried at the time as their sibling was unwell. They lived nearby and asked if I could do a quick blood test for their sibling, who was also part of our service. I stated that I’d do their consultation, and if I had time, would look into it as I had other patients waiting.
Later on, I read through the sibling’s discharge summary and was shattered. There was a lot on there about poor compliance, complications of diabetes…….it was a mess. I took the kit I needed and headed to the home. The person was in an awful state. I took the blood test needed and they used the blood to test their sugars. I could tell this wasn’t going to be good.
They were throwing up, dehydrated and their sugars were 17. It was a bad mix. They asked for advice and I couldn’t give any, as my clinic wasn’t a diabetes one. It really broke my heart, but you have to be professional. I advised they seek medical attention, and left. As I got back to the clinic, I realised I forgot one of my monitoring devices. I headed back to the home and an ambulance was there. I got the device, wished them well, headed back to the clinic, tidied up and went home.
There are times in my job I experience these things and often ask myself many questions. Most of them are “Why not me?”, “Why does diabetes lead to so many bad outcomes?”, “Why do I find people in situations I’ll probably never find myself in?” and it usually ends up with “Why bother?”.
Afterall, it’s a lot easier hiding from a condition, not having to think about it, than grinding your way through your daily routine only to be seeing others suffering, with you not having the ability to influence or change their outcomes in a positive way. That stuff is soul destroying, but I guess at the time I couldn’t see any way to process that in a positive way. I thought, “who would understand, and who could, if they would understand, be able to do anything about it?”
I guess weeks went past, and I cared a little less, it gets better from here onwards, promise!
So I turn up to my appointment, expecting the same response. Hopefully this year, a little quicker as I won’t have to travel back to work.
So I get called up, knock on the door, open it. “Hi can I come in?”. “I haven’t had a chance to read your notes yet….do come in.”
From then onward it was quite an interesting consultation:
“Where’s your diary?”, “I don’t have one” (expecting a massive lecture/some condescending remarks at this point….).
“So how do you monitor?”, “I dose according to how I feel” (probably the first time in years someone has actually taken the time to ask the question, rather than judge straight away).
Usually I get a sarcastic smile or a brief laugh. Instead I got a look of someone who was genuinely interested, trying to take a moment to understand.
I felt bad at this point and decided to pull out my phone to show a pic of a day I had with a libre, showing a full 24 hours without a sugar over 9mmol/L.
“Not a single sugar over 9?!”, “Yeah…” (I couldn’t really be bothered about a conversation at this point).
At the time I just wanted the consultation to end and go back to work. The checks (though understandably important), were just a tick box exercise of me. Nothing ever changes, so I decided to answer all the questions with short answers. It was the quickest way back to work, and the quickest way to forget I had a chronic condition to manage.
Towards the end of conversation, doc was like “Have you ever thought of seeing a health psychologist?”
Again, I just wanted to be out as quick as possible so decided to ask for their recommendation and then say “can’t be bothered, can I go now?”
To this day I will never forget what happened next. I asked “What would you recommend?”
“I’m not going to recommend anything, here is some information.”
I was stunned into silence I guess, and didn’t know what to do next. The freedom of choice is one thing, but it’s extremely powerful for a clinician to be extremely non-judgement. To understand the dark places a chronic condition like diabetes can take you is something you can’t really learn from a book, nor pick up from experience; you have to have a personal connection with diabetes to do that.
“Do you have diabetes?” I asked, trying with all my years of having t1, to figure out how someone could pick up so much from so little information given.
“No I have a relative and growing up…….”
For the first time in years, I had a meaningful conversation about t1 with someone. I was still demotivated, and managed to negotiate a yearly appointment instead of a 6 month one. Doc was still okay with that, which was really nice. 😊
I thanked them for their time and went on my way, doc even managed to convince me to see the DSN and dietician at a later date.
After that point I thought to myself, there must be some “good” out there. Over the next few months I searched for diabetes groups online, attended some in person meetups and actively searched for some diabetes stuff.
I even went to the health psychology appointment and it did help put things into perspective.
A few months later I went to a diabetes tech event where Chris presented how the dexcom had helped him manage his sugars with sport. I caught up with him after and said “I think you should start a diabetes football team.” He was like, “There is one!.” 2 years in, it’s had a massive impact on people across the country (all the way from the Isle of Wight to Scotland!).
It’s truly changed some people’s physical and psychological health – for the better! There’s even a local London team and every day it’s growing. It’s also got so much more to offer too! This is a must watch video if you want to find out more!
I even turned up to the annual diabetes picnic in London. This is where I met Tim Street and learnt about looping. What an amazing concept I thought. This eventually led me to building a loop system, making managing diabetes slightly less of a burden. I’ve seen the #WeAreNotWaiting movement take huge strides to making t1 safer, more manageable and less psychologically draining.
I also joined loads of T1 facebook forums and have seen so much positive support, and positive change coming from them. A big shoutout to Louise Troubridge, who helps to effectively manage the “Type 1 diabetes uk” facebook page. It’s got over 8,000 members! 😮
My favourite facebook group (sorry to disappoint Louise!) is “Libre line art”. Do have a look as you don’t need to be a facebook member to appreciate it!
There’s also the amazing “GBDoc” (Great Britain diabetes online community) on twitter, who are never far away to provide help and support if you tag “#gbdoc”. They even hold insightful and entertaining “TweetChats” on Wednesdays at 9pm. Follow ”@GbdocTChost”
Furthermore, this year I’ve fasted a whole month for the first time in my life (see my 30 day graph below). A huge thank you to Dr Sarah Ali (@AliRacaniere) and Dr Sufyan Hussain (@sugarydoc) for making this an achievable reality, despite Covid and it being my first ever attempt!
I feel really good to get that off my chest.
Just remember you are not alone! Sometimes it takes a human to just listen and “try” to understand. I know this year has been extremely tough psychologically, financially and socially.
Reach out, know that you’re not alone, bounce off people, celebrate the small wins, take it one step at a time, love yourself, be grateful, there is a lot of good in this world and I’m thankful I’ve found it when I needed it most.
I dedicate this post to my awesome endocrinologist Dr Karen Anthony, and my now, unfortunately retired 😢 DSN and dietician; Susan Olive and Janice Mavroskoufis.
Sometimes you just need to take a step back, listen, be non-judgemental and “try”.
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.
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 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:
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:
Thanks for reading,
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.
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.
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!
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!
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!
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.
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:
“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.
I’m only just starting off with diabetes but I know I can handle anything.”
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:
Below are some of the generic details about my day to day management…
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
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
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.
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
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!
Live. Play. Inspire.
In our fourth instalment we feature Zak Brown… Zak is currently living and working in Australia but has been heavily involved in all things TDFC throughout 2018 as a pivotal member of the UK DiaEuro squad, whilst also heading out to Ireland with Chris to observe the Diabetes Junior Cup… Zak’s passion for the project is evident and in this post he shares his thoughts on how being involved has helped him! No more words from us, over to you Zak:
“I think firstly and foremost, the opportunity to meet several other T1D’s with a passion for football was amazing in itself! To then be able to discuss our condition as we went through very similar schedules during DiaEuro was great – having a diabetes discussion with your team-mates was like having 10 nurses beside us, as they added great value through personal stories and specialist advice.
The access to technology was a huge thing for me personally. I was a bit skeptical of the Dexcom G6 initially, as I have been on the same insulin and blood sugar testing strategy for a number of years and been relatively consistent (HbA1c usually between 50 and 61). It took a couple of days to adapt but several months later and I wish I still had the G6. I regularly see T1D’s on social media posting about how much the Dexcom has improved their control in recent times.
The other thing which was highlighted for me was the carb counting. I have generally just guessed my insulin based on what I am eating and knowing how it has affected my sugars in the past, but to see plenty of my UK team-mates measuring the carbs on their packets of food and calculating their dinner plate in the their head was a good insight for me; and pushed me to start making more calculated guesses with my own carb intake as life and diabetes continued after the tournament.
Whilst I wouldn’t say the experience has directly improved my control yet, I think it has acted as a gateway for me to access more information, attend diabetes meet-ups and possibly gain access to modern technology, which I expect will have a direct improvement on my Type 1 Diabetes control moving forward! Only time will tell…
UK DiaEuro 2018 Player”
If you want to follow Zak’s journey on social media head to his twitter @mrzakbrown or his instagram @zakbtown