Another leading member of The Diabetes Football Community and a veteran of the UK Diabetes Futsal squad wanted to share his views on 2020. Zak has been living a long way from home, with the pandemic unfolding in a completely different way in the country of his birth, to the country he’s been living in…. A really interesting insight from Zak and we want to wish you all a Happy New Year wherever you are in the world and thank you for all of your support. Over to you Zak:
“It’s obvious that many people will be glad to see the back of 2020. However, reflection is an important part of every cycle or transition to a new period.
And with any reflection, it is important to acknowledge the positives of the year just passed.
Despite challenging circumstances, I have seen so many friends on social media starting up a side-business this year, whether it be selling hand-made gifts, homemade cakes, or launching a company they had been thinking about for years, and had finally been given the time to turn a vision into action.
Secondly, I have seen some seriously impressive 5km, 10km and further run times from people who had barely ran those distances before. The ability to get out in the fresh air and to explore the local environment will always be free, and for that we should be grateful. It also shows how quickly we can improve at something if we just put the time and effort in.
My situation is different to most right now, as I moved to New Zealand at the end of 2019 from Sydney, where I had been working on an overseas visa for the previous three years. The events that were about to unfold meant that it turned out to be a fortunate decision in many ways, with New Zealand containing the virus for much of 2020. However, despite the relative freedom, it still affects me in a similar way to others as I don’t know when I can next fly home to see my family and friends (I was due to see them this Christmas).
The main challenge for me this year has actually been diabetes-related. The health care system here isn’t quite as advanced as in the UK, meaning diabetes care options are much more limited. For example, only one type of long-acting insulin is government funded (Lantus) and CGM is mainly self-funded here too. Due to my current visa status, I am not eligible for any discount on prescriptions. The full price of insulin, the thing that keeps me alive on a day-to-day basis is eye-watering at times, and certainly makes me feel some empathy for our friends across the Atlantic in USA, who deal with similar battles over the cost of their diabetes.
Despite these hurdles, I have taken a positive outlook and tried to address how I can combat this challenge. To save some money, I decided to cut back on a couple of other “luxury” expenses. However, I made sure I did not cut back on my diabetes care, as health is so important, therefore I tested as much as I usually would, despite the extra costs. This yielded a positive result, with my HbA1c resulting in 42 at my last check-up; the lowest it has been since diagnosis 14 years ago. I remain hopeful that my new visa will come through soon and that I can then access my insulin, test strips etc. at a more reasonable cost.
Looking ahead to 2021, our CEO at Sport Wellington summed it up quite well by wishing for a “dull and boring” 2021! With uncertainty set to continue for a while, “prepare for the worst, hope for the best” may be a good mantra to live by. For me personally, the current situation just re-iterates how happiness and health are essential to our livelihoods. So, I would encourage everybody to think about what makes them most happy? And think of how you can achieve this in whatever circumstances are thrown at you. And when we think about health, as people with Diabetes we have that extra aspect to think about; but remember that health is holistic and not just physical – mental, emotional, social and spiritual health are all contributors to our overall wellbeing.
Take care everyone and wishing you all a Happy New Year.
After Jon’s incredible commitment to the work of our cause he has recently been added to the Board of Directors at The Diabetes Football Community C.I.C after a recent organisational meeting… Congratulations Jon and following that he sat down to write his thoughts on what’s been going on for himself in 2020…
“2020. What a stinker of a year. Diabetes and football both suffered for me this year. It started off recovering after shoulder surgery in November 2019. January brought the first few football training sessions and I was finding my fitness again. Then I broke a rib training when an innocent collision with a team mate caused me a ridiculous amount of pain. So another recovery and just as I was getting started again, we entered lockdown! Roll on August when we started pre season training. It was going well and I’d played the first few games of the season when I had a nasty accident on my bike resulting in a horrible concussion, keeping me off football for another 10 weeks off after a month of constant headaches. On top of that, I’m also suffering with 2 frozen shoulders, which really limit the movement and impact massively upon my sleep every night (any advice welcome!) Frozen shoulders are another one of the added complications that people with Diabetes are prone to, with no known evidence as to why. Add to this the mental impact of working from home that so many of us have suffered with, and it’s not been great on that front.
Then there’s the blood glucose…..all the periods of inactivity make it harder to maintain tight control for me. Some days have been great, some awful! When you factor in the increase in body weight meaning it’s another factor to have to deal with when calculating the regular insulin, it’s been a tough battle, but one I’m determined to win.
So what about the positives? Our TDFC WhatsApp group has been far more active, with lots of advice and mickey taking going on as people are facing new situations and have more time on their hands. I also took on the role of updating the social media accounts during lockdown, so was responsible for posting and editing all the toilet roll challenge posts and the player profiles. While it was time consuming, it was also great to interact with so many people, and realise the difference that TDFC was making to so many. It was great reading the comments posted on the clips sent in, and the encouragement and advice that the community were offering each other.
I also got involved with Diabetes UK and a couple of their campaigns on being active with diabetes and diabetes and technology, and have featured on their website a few times, social media channels and recently in balance magazine.
I also recorded a podcast with a veteran of the podcast Chris Bright! We were lucky enough to be invited to do one with Stevie Ward, captain of Leeds Rhinos (my team!) and the charity he has set up to support means mental health, Mantality. We’ve had loads of positive feedback from it which is great to receive and if you haven’t heard it yet check it out by clicking here .
So 2021. Here’s hoping for a better year for sport and diabetes!”
it’s ok to not be ok and always reach out when things are tough… 2020 has been a year like no other and we just want to say we’re always here for anyone who needs to reach out. So many of us have had a tough year and we need to stick together.
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”.
2020 hasn’t been the year any of us expected and instead it has provided us with challenges that none of us could have imagined… It’s been tough for the entire world to come to terms with….. So what we’d like to do now is showcase how some of our community have been coping with the situation we’ve been confronted by. So if you’d like to share your lockdown or post lockdown story of how you’ve been dealing with the COVID19 crisis we’d love to hear from you!!! Send your stories in to us with your pictures and videos and we will get them on the website. We hope that by sharing your story it will help and inspire someone else who might be finding the situation difficult to cope with.
To kick us off we’ve got a story shared by Tim Ward (Our Men’s UK DiaEuro team Captain) about how he’s been adapting with COVID19 to coach children all whilst trying to keep himself safe after 40 years with type 1. No more words from us, over to Tim :
“The footballing world has always been a tricky one to navigate with Type 1 Diabetes, what are my blood sugar levels, have I got my glucose/Lucozade, what time did I eat, will I need something more at half time. The list goes on. Now as a coach it feels to me the bar has been raised. I now have eighteen 7 to 10 year olds to care for so I have to be on my game and touch wood, I’ve never had a hypo yet while coaching.
After the COVID-19 lockdown the academy (IFA) I work for started to run academy and pre academy sessions again (to the delight of the kids and the parents as a chance to burn off some pent up energy) in June after the FA guidance gave us guidelines to do so.
The restrictions including limits on player numbers attending, social distancing and hygiene, disinfection requirements were a needed headache especially for me being within the high risk group (44 years old, type 1 diabetic). But I’m fit and healthy so don’t put me down just yet. 😊
Every child and coach had their own station to place drinks, possessions etc and parents were asked to stand at the far end of the pitches where we trained, whilst being well aware of the requirements through WhatsApp messages and our Heja app.
As a group we designed some amazing sessions emphasising ball mastery and challenges which kept the kids entertained and making them competitive through time trials & races which mitigated the lack of competitive matches.
Thankfully we can now run normal (ish) sessions but the planning and organisation required in the beginning I feel has improved me as a coach. I spent hours reviewing all aspects of each session more thoroughly whilst spending more time reflecting to make each session a great one (still working on that).
As a diabetic of 40 years being prepared has always been part of my make up and the extra restrictions and planning required didn’t really alter my approach, get it done, crack on. Always making sure I’ve planned for my diabetes as well as the sessions, to ensure that me and the kids are as safe as we can be, so we can all enjoy what we love doing, playing football!”
Make sure you get in touch if you’d like to share your story.
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:
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 arecurrentlydoing, 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 solelymyproblem, 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.”
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.
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/
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.
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.
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.
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.
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.
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.
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.
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.
I have been fortunate enough to experience living and travelling in many countries in the last 10 years since graduating from University. For anybody that is thinking of travelling, or moving to another country, you may find some of the experiences I am about to share useful. I must also stress that I am in no way a medical professional and any advice I give is purely based on my own opinions and experiences! Of course, the subject of football/futsal will feature too being a TDFC post…
As I prepared to embark on my teaching career, I took an opportunity to travel in the 8 months I had available before starting my Post-Graduate Certificate in Education. Thailand became my first choice of destination, as I saw a company offering a week-long introduction in Bangkok and a guaranteed job teaching English as a foreign language. I had also pre-arranged a spot on a summer camp in New York to do in the summer, so my plans were in place… Thailand January-April and USA May-August, then PGCE from September onwards.
Because I knew I was in Thailand for a set amount of time, I arranged a large prescription with my GP and got all the necessary jabs before travelling, which was a smooth and painless process. However, when it came to packing my backpack, I soon realised that my diabetes supplies were taking up about 75% of the space in my 65L backpack! So a tip from me is to remove as much packaging as you can – for example putting needles in a plastic wallet, as opposed to keeping them in their bulky box. That way, you still have a few clothes to be able to wear on your travels!
I could quite easily do a separate blog for each trip that I have done, but I will try to keep things brief. Thailand exceeded my expectations in every way possible and I was so reluctant to leave when it got to the end of April, but I knew I had the summer camp experience in USA to look forward to next.
Lessons learnt from Thailand regarding my type 1 diabetes… Humidity can definitely have an impact on blood glucose levels and because of the amazing street food culture in Thailand, it is much more difficult to count carbohydrates from something that is made freshly in front of you without any packaging to look at. Due to the heat and humidity, I found that even just putting a couple of units of insulin in for each meal would regulate my sugars pretty effectively. One benefit to the street food culture is that you’re never too far away from a hypo treatment! The other major challenge that I faced is not having a fridge in the apartment I was living in, so I just kept my insulin in the coolest, darkest place. The insulin still worked, but of course I keep it in the fridge whenever possible based on medical advice! The point here is that there are ways to adapt, even if everything isn’t how it usually is in the comfort of your own home or country.
Getting a waterproof bag is another piece of advice I would give – when you are going scuba diving or snorkeling you can be safe in the knowledge that your testing kit or electrical supplies won’t be flooded! They are cheap to buy in the street markets of Thailand too. Another reason why you’d need a waterproof bag is for Songkran – The festival to celebrate the Thai New Year. Held around mid-April, it consists of huge water fights through day and partying by night.
A three-week transition period at home allowed me to order another large prescription for the supplies I would need in America and prepare my J1 visa which involved a day-trip to Belfast and back from Manchester. I was stoked when I arrived on camp to find another type 1 diabetic staying in the same bunk as me! Cole was from Pennsylvania and was in the circus department. He could do some unbelievable tricks juggling balls, batons and even knives. You could say it’s a nice metaphor for juggling his type 1 diabetes!
In the midst of making memories during my travels, I made a big decision to postpone my place on the PGCE course I was due to start in September. I was loving life so much, that I wanted to experience more travel before settling down into a teaching career. Fortunately, the experiences in Thailand and USA were not at a detriment to my career and had actually provided some valuable teaching and coaching experiences outside my comfort zone. My sights were now on Australia, so I saved up working at my former Secondary School. Much of the preparation for the move to Australia was the same, cleverly squeezing my diabetes supplies into my backpack, leaving enough room for clothes.
However, the move to Sydney was more of a long-term one. I had no return date and was open to the idea of becoming a permanent resident if the Aussie lifestyle was too good to leave. That almost became a reality and I spent over 3 great years there. Joining a football team was an easy way to make new friends shortly after I arrived. I played for two different football teams over there, with the latter probably being my overall favourite experience being a part of a football club. Not only did we win the premier league that season and make the final 4 teams in the state of New South Wales, everyone in the team got on so well and I have never felt more comfortable being a diabetic in the changing rooms (other than TDFC where we are all diabetic!). In fact, 5 minutes before our grand final was about to start, I came down with a hypo and had used all the sugar I had brought with me. Luckily, a team-mate quickly grabbed some sweets and I was just about good to go when the whistle went for kick-off. That small gesture meant that I could play the full game, winning 3-0 and be given Man of the Match.
I first came into contact with Chris Bright from TDFC whilst out in Sydney. Having seen a Facebook post stating that they were on the lookout for players to represent United Kingdom at DiaEuro, I was determined to grab that opportunity! Having represented UK at the Junior Diabetes Cup in 2009/10, I understood how great the experience was to represent country and condition – and knowing that everybody on that field goes through the same challenges as me every day.
Not being able to train with TDFC back home in the build up wasn’t ideal, but luckily I was playing futsal on a regular basis by this point. A friend of mine in Sydney, Shane Watson knows just about everyone and everything futsal related in Sydney. From our football connections, we had a team of friends competing in leagues and tournaments. Although futsal is now really taking off in the UK, many of the TDFC team hadn’t played much futsal by the time we arrived in Bratislava 2018. Details of how that tournament went are in a previous blog here.
Flying back home to play in DiaEuro is worth it for so many reasons for me. Playing in a futsal competition with elite players, sharing knowledge and experience around managing type 1 diabetes with team-mates, having access to the latest diabetes technology through our sponsors Dexcom and of course seeing my family and friends!
Back to the travelling aspect of living with type 1… It was straightforward for me to access my diabetes supplies at a reasonable cost in Australia. They have a National Diabetes Service Scheme (NDSS) allowing access to diabetes supplies at reduced costs. Insulin was prescribed through my registered GP in Sydney and it would cost me around $40 for a 6 month supply of insulin. Taking into account that I use two types of insulin and go through a 50 box of test strips per week, it would cost me around $500 per year for my diabetes supplies. Whenever I did return to the UK, I would get a large prescription of supplies to take back out with me and would be lucky to have the Dexcom G6 to use from DiaEuro too. Australia has a reciprocal healthcare agreement with UK, so I would encourage anyone who works over there to register for Medicare, which is open for everyone, not just type 1 diabetics.
I am now living in Wellington, New Zealand. Things here are a little more difficult as a type 1, as there is only one brand of test strips that are funded, so I have changed testing kits for the first time in over 10 years! Due to my visa status, I don’t currently get reduced costs for my test strips or insulin, so I would estimate that it costs around $2000 for my diabetes supplies here annually until I get permanent residency – then the costs would go right down to less than $200 for the year. Due to covid-19, I won’t be going home this year and DiaEuro is also postponed, so I am just taking the financial hit on the chin and I’m looking forward to the day where I can say I am a permanent resident of New Zealand!
All of this makes me realise how lucky we are to have the NHS in the UK – as citizens of so many other countries around the world face the added financial cost of living with type 1 diabetes.
However, to finish on a positive note, there is no reason why you cannot travel the world living with type 1! A little extra preparation and organisation can go a long way. I am currently watching Race Across The World on TV, which features one contestant with type 1 diabetes and it’s great to see somebody else showing that diabetes will not stop us!
If anybody has any questions about travelling or moving countries, I would be happy to help and chat further. Feel free to e-mail me at firstname.lastname@example.org