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 long time since we’ve been able to write this, but…….. WE ARE BACK! This weekend coming, we will be resuming our Men’s Diabetes Futsal sessions at the Worcestershire FA headquarters after a gap of 15 months due to the impact of the Coronavirus pandemic.
It’s been a tough break for us all. We know so many of the group took a lot from the sessions in the past and we’re hoping to bring back all of that positivity, engagement and support to our upcoming sessions. We know there’s a lot of excitement amongst the ranks from existing and new players to the project so we can’t wait to get back out there!
We will be starting back on the 27th of June with another session planned in for the 25th of July as well so if you want to get involved please do get in touch!
For us these sessions will be about re-engaging with our community, getting our squad back together to play as well as welcoming new faces to the pitch. We should have a good laugh and a lot of fun which is what it’s all about.
We must also say a big thank you to The Tackling Inequalities fund created by Sport England and put into practice by Active Herefordshire and Worcestershire. They’ve supported us with funding and support to help get us back off the ground after what has been a really challenging period during the pandemic.
It’s going to be a really exciting month for us as the sessions get back underway whilst we also continue to grow the women’s arm of the Diabetes Futsal squads…. However, ahead of this first session we thought we’d invite one of the newest members of the community, who will be attending his first session this weekend, to describe how he’s feeling ahead of Sunday…. Over to you Bryn:
“I’m really excited to be finally meeting up with the lads from TDFC. Ever since I watched Chris’ story I just knew it was something I would love to be Involved in. So to be invited to training with them is really special.
I was so inspired by the work of TDFC I even held an active fundraiser for the charity through my sports coaching business ‘BMO Coaching’ – we managed to raise £377.50 for TDFC and £900 in total, which we shared with other local charities.
Living in the Welsh coastal town of Aberystwyth, I have only met a total of two T1D players that are still playing senior football so It’s going to be a fantastic experience playing / meeting with other T1 diabetics in a football environment.
I’m passionate about raising awareness and passing on knowledge about diabetes, especially throughout my area of Wales. I’ve been playing football with T1D for 20 years and I’m keen to show people that it doesn’t stop me from playing sport and doing the things I love.
The lads have been really welcoming on the group chat so I’m looking forward to a session with them to break the ice. “
Thanks for sharing your thoughts Bryn and isn’t it great to be back!
Hey! My name is Louise McCay and I am a 27-year-old type one diabetic with a passion for football & futsal.
At the age of 11 I was diagnosed with type one diabetes after my parents picked up on a dramatic change in my water intake. I had gone from having been forced to have to have a drink before school to literally downing pints after pints and never quite quenching my thirst. After a couple of days of monitoring this change in behavior my parents purchased a blood glucose meter and tested my bloods to find that they were 32 mmol. At this point we had very little knowledge of what this meant, how the body works and just simply the severity of high blood sugars. It didn’t help that I had ravaged through a bag of skittles after school too, so we decided to hold fire and test them again in the morning after fasting. Sure, enough when we tested them again in the morning, they were still super high, and it was an inevitable trip to the A&E…
“Can I still play football…?” – The first and only question I asked when the nurse broke the news of my Type 1 diagnosis to me. It may sound stupid to most of you considering the health implications of Type 1 Diabetes but at the age of 11 football was all I could think about and the thought of that being taken away from me tore me apart. This is why when I stumbled across The Diabetes Football Community (TDFC) I just HAD to get involved.
I have very recently become part of TDFC team to help focus on the women’s side of the game. The Diabetes Football Community is well established within the men’s game – driven and founded by Welsh Futsal International Chris Bright and I want to help make the women’s side just as established. I have joined Chris alongside Katie McLean, Lucy Wieland & Becky Upsher to help kick start and maintain TDFC Women’s.
I have played football since the age of nine with the majority of my childhood being spent at Watford Centre of Excellence before I set off to Bournemouth University where I continued to play. I now play locally for AFC Dunstable who currently sit in Tier 5 of women’s football as well as dabbling in futsal in recent months. When I was younger there was very limited attention and focus on women’s football as it was, let alone on type one diabetes in women’s football and until joining the team here at TDFC I have not knowingly come across another female player with type one. Without really realizing it at the time this made my whole experience in football different to the other girls around me, for many years I just wanted to play football and underestimated the impact my diabetes could have on my performance.
With so much more awareness and resources surrounding type one over recent years, I am learning so much more about control during exercise and more specifically during football. I believe that if there were resources and communities like TDFC around when I was younger it would have made a huge difference on both my control and performance. I would love to be able to make a difference and help other type one footballers excel at what they love most. I was so inspired by the stories, podcasts, resources and accomplishments of TDFC – which is why I got in contact with Chris.
The aim – Through TDFC Women’s we hope to raise awareness of Type 1 diabetes whilst also building a supportive and safe community for diabetics within football where you can meet other likeminded people. Our long-term aim of creating an all-female, all diabetic futsal team with the hope to enter competitions, inspire others and show the world that having diabetes doesn’t hold you back within sport.
Currently we are in the recruitment and awareness stage of the project which, as many others, has been on the back foot due to covid.
So, to kick start things, over the last few weeks we have:
– Set up our Twitter page @TDFCWomens which has already started to gain momentum and spread the word (go on… give us a follow!!)
– Created a core team to work with Chris and really bring the project to life
– In progress of planning our launch event!! Hoping to incorporate networking, learning and of course playing some ball – watch this space for more information and a pretty amazing venue.
Would you like to get involved!? We are actively looking for anyone who wants to get involved in any way, shape or form! Whether it be playing, coaching, helping out in the background or just being part of the online community.
If you want regular updates on what we have going on, have any questions or want to be part of the team, follow @TDFCWomens on Twitter or contact us by email – thediabetesfootballcommunity@gmail.com
We look forward to hearing from you and are excited to watch the TDFC Women’s journey unfold…
To be honest, until I heard Stevie Ward talk about his struggles with Post-Concussion Syndrome on the Mantality podcast I hadn’t even considered talking about this….. Nor was I really ready to share what it’s been like, because to be brutally honest it’s been far from ok.
However, having heard him talk so well about the challenges and how it mimicked so much of my own experience, I felt empowered to get it off my chest as this subject hasn’t been spoken about anywhere near enough, especially within sport. As someone who’s used to dealing with an invisible condition on a daily basis, I thought I’d be relatively well equipped to cope but there was a key difference to this diagnosis from the off. This time I opened up from the off and told people what I was living with, a different approach to my type 1 diagnosis, but ultimately very quickly I was reminded why I adopted that approach before….
When people can’t see, feel or experience what you’re going through they find it hard to believe what you’re telling them. Throughout society there’s a distinct lack of empathy (in my opinion!), that ability to see the world through someone else’s eyes for just a minute. I think it’s a root cause of many many issues across the globe but this is slightly away from my point. It’s also had a huge impact on my life again coping with post-concussion syndrome ( a brain injury!).
I’ve had people almost patronise me, almost can’t believe I’m still talking about, think it’s not that serious, think I’m overdoing it and overall think I’m making a mountain out of a mole hill. Another invisible condition, something else people can’t see through my eyes for a moment and here we go again, another condition with stigma attached.
For me it again just demonstrates why people with hidden conditions like type 1 diabetes, don’t talk about it much in mainstream society. You’re made to feel as though you’re constantly the problem. I hear the lip service paid to the words diversity and inclusion all over the place in 2021 but until individuals become accountable for those words to themselves, how can those things really be achieved?
I wanted to make that point clear, that empathy can make all the difference and if you catch yourself making a pre-judgement of someone, see if you can just take a minute to look at the world through their eyes….. It might change everything.
But I want to talk about what the condition has been like as well, because it’s been awful at times and it needs more people talking about it.
So, since September 2020 I’ve been dealing with symptoms of post-concussion syndrome which started with not much more than being off balance for a header which then came off the wrong part of my head and followed with a number of other knocks in the same game, contributing to an initial concussion. But the concussion wasn’t immediate….
My symptoms didn’t start until 4/5 hours later….. I was just sat in the pub with my friends that evening and I suddenly felt incredibly tired and my brain was a bit foggy, whilst struggling to engage in the conversation around me. Luckily, we all headed off pretty early that night and I got home and went straight to bed not thinking too much about it, other than the fact I was a lot more tired than usual…. Then I woke up the next morning.
The first thing I noticed was that I’d slept for 9 hours without stirring, which is unusual for me. Following that I could tell I still felt extremely tired despite sleeping that long! I felt I could’ve slept another 3 hours easily. Both of these things really struck me… Then the really obvious issues began.
I didn’t quite feel steady on my feet, I mean I wasn’t falling over or tripping but I just felt a bit off, then I had this foggy way of thinking which affected my recall and ability to properly participate in conversation. Ultimately, I was struggling to process information and provide speech as easily as I had found it 24 hours before. I was also noticing that concentration and especially on screens, such as my phone or laptop would really flare up a headache and intensify the throbbing, pressurised feeling I had in my head. Alongside this was a feeling of nausea when I concentrated too much. This was the day after the first concussion.
I then woke up on Monday morning and felt much the same, with things ever so slightly improving but I needed to speak to my GP to understand what was happening. So I managed to get through and speak to them about what I was experiencing and through a telephone triage appointment I was diagnosed with mild concussion, no tests, no examination, all via the phone. As this was my first experience of concussion in my life, the lack of urgency or need to examine me, filled me with a view that it wasn’t too serious, and I’ll be ok in a few days. The advice was to rest and not do contact sport for 2 weeks. If things got worse, I was told to go to A&E to have a scan but as things improved I didn’t feel that it was necessary to do that. The key word was REST in the GP’s advice, but rest looks different to each person and without any sort of definition of what that looked like I chilled out for a few days, took time off work, didn’t really exercise and then gradually incorporated some of that back in, towards the end of the week. The very blasé view given at the start of my diagnosis filled me with an ill-informed opinion of the gravity of the situation and no real insight as to how to approach the next 2 weeks bearing in mind my personal situation. It could’ve been read out of a textbook. I now know that this was a huge mistake but I can’t turn back the clock…. I wish I could.
Needless to say, that 2 weeks after that first concussion I went back and started an FA Vase game. Looking back, I think I knew I wasn’t quite right but with it being a biggish game for the club and me being a senior player, I wanted to get out there and play. When you’re a competitor you always want to be out there. I played the full 90 minutes, we played really well, won the game 4-1 and after initially feeling a tiny bit rough, by the end I was good as gold, or so I thought. I had played the game with no head collisions or challenges and made 6 or 7 routine headers, so I thought I’d probably be ok as a result. But after the adrenaline subsided, the symptoms came on quicker. On the car in the way home (I wasn’t driving!), I could feel that the nausea was there with the fogginess and they were getting worse. This time I obviously knew what it was, so I accepted I was going to feel awful for a few days again and hoped that maybe after a month of not playing this time it’ll go back to normal….
I was obviously wrong… I went back to square -1!
The symptoms were worse than previously and because I was having to work to bring in money, and I wanted to try and keep my mental health in a good place by exercising too, I was struggling with making any progress as I wasn’t getting enough rest. I got better to a point after 2 weeks and then after that I had lingering reoccurring symptoms which affected me on a daily basis. It was worrying, frustrating, frightening and all the other emotions mixed in between.
After continuing like this for a month to 6 weeks, my anxiety about it reached the point where I needed some advice. I rang my GP again, I reached out on Social Media and I looked for anyone who could help. Coupling that with the November Lockdown and it was a really tough place!
I got some good advice and support which has helped to move me forwards and my symptoms have gradually lessened but I’m still not able to work at a full intensity with my exercise and I struggle with continuous screen work as it brings on a throbbing pain in my head and I can feel a little skippy or unbalanced but compared to October/November it’s a world apart. I need to look after myself for a moment and forget about playing sport, this is bigger than that.
But still to this day I’ve not been scanned, examined or seen in person at all regarding my concussion and my memory/ recall is just not as sharp as it was. I hope that one day it’ll come back to something closer to where I was but my recovery is still in progress and even recently took a bit of a hit after too much time spent at a screen working. I thought I was in a place where I was ready for it but in turns out I wasn’t! I heard Stevie say it and I resonate it with so much, the recovery just isn’t linear at all, one day I’ll feel like it’s disappeared and then another I’m really reminded it hasn’t!
I look back now and I know I should have stopped myself playing. I reflect on that every single day. I wished I’d taken things far more seriously and I wish that there was less stigma surrounding talking about brain injuries or mental health conditions within sport. It might have been the difference in me taking the time out to properly rest.
We can’t change that overnight but even if me just sharing this blog post and my experience can help one other person who may be going through this, has gone through this or may unfortunately have to face this in the future, at least through the dark times I’ve been through someone else might take some comfort.
A huge thank you to Stevie for sharing his experience so publicly, which has given me the courage to put mine out there, as writing some of this hasn’t been easy, especially when I’m still going through this. I hope to one day look back at this post and say I recovered. If you have never checked out Mantality before, you should! The work that Stevie and Natalie are doing is shedding a light on concussion specifically and mental health more broadly. It’s a fantastic project and it’s certainly supported and inspired me.
With the premier league recently introducing concussion substitutions and demonstrating a step forward around these types of injuries, more stories and experiences need to be shown as to how it effects everyday lives. It needs more awareness to end the stigma and allow people to feel comfortable talking about something so dangerous.
I have no idea if my Diabetes continues to play a part in my recovery or whether it had an impact in the concussion in the first place, but like with everything I’ve faced in my life, this challenge is one I’ve accepted and will continue to embrace.
I now advocate for Type 1 Diabetes and for greater awareness around the impact of concussion.
I would love to hear anyone’s thoughts on this subject and thank you for reading.
Chris
A summary of some of my symptoms below:
Immediate symptom: tired much earlier in the evening than I’d ever been before.
On and off symptom: Felt a little bit off balance.
Continued symptom: Working with screens would really upset my head. Whilst looking at them in the mornings before I’d got going would cause a headache which lasted for hours.
An immediate symptom and when I’ve done too much: Felt skippy, turning too quickly would set me off.
An early symptom and when I’ve done too much: Pressure in my head and a headache for quite a number of days.
An early symptom: Nausea, feeling a bit like being car sick or motion sick.
An early symptom and when I’ve done far too much: Foggy, I struggled to connect my brain to the conversation around me.
I even got my eyes tested to check that I wasn’t irritating my head with my eyesight.
When I exercised or ran too quickly, I’d irritate my symptoms and go backwards.
Immediate and continuous symptom: Forgetful – Forgetting names of people I always remembered previously and getting frustrated and worried/upset about noticing this. Just forgetting what I was doing a few days ago or situations I always remember.
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”.
It’s always great for TDFC to link in with others who share our passion for sport, exercise and overall fitness whilst living with Type 1 Diabetes. So it’s great that we could invite Daria to share some of her insight as someone highly engaged in an active lifestyle which encourages all of those things as well as a big emphasis on nutrition through her work… So no more words from us let Daria tell you about her work, experiences and her story.
“Fitness, nutrition and medication are the 3 pillars of diabetes management. Sport and exercise can affect blood sugars in different ways, depending on what type of activity is performed. We need to adapt our management to achieve best blood sugar results and top performance in sport. We can do this by altering our nutrition and medication around training sessions.
There are 3 types of exercise that diabetics are to be concerned about:
Aerobic (cardiovascular exercise): Steady running, walking, cycling, non-expulsive repetitive movement. This type of exercise will make blood sugars drop quite drastically and rapidly, if not accommodated for.
Anaerobic (resistance training): heavy weight training, variations of crossfit and similar. Adrenaline, cortisol and other stress hormones are released as a response to resistance training, which cause the liver to release some glucose into the bloodstream, causing blood sugars to rise.
HIIT Training: any form of expulsive movement or sprint training. Fight or flight (stress hormones) are released, as well which is likely to cause blood sugars to spike during the workout and then quickly drop after the workout.
Fuelling yourself correctly for workouts is not just important for blood sugar control, but is also essential for giving your muscles enough energy to move and perform in an optimum manner. Setting up a routine for each type of workout you perform will massively reduce stress levels, help avoid highs and hypos mid-session or mid-match, and make exercise much more enjoyable.
There is no one way that will suit everyone, but as an example, I want to share my ways of managing the different workouts I do. These are long-distance running and road cycling, spin and boxing classes, as well as my all-time favourite gym weight training. I don’t play football, unfortunately, but from the experience of supporting other T1Ds, I know that matches can be stressful, and that in itself can cause a hormonal spike, which will rise blood sugars. There is no way of getting out of this, accept for using insulin to prevent the rise.
The way I prepare for my training is by keeping the timing if the workout the same: in the morning, after breakfast, as I find my performance is a lot better and I have set-up my pre-training routines for that time of day. I also eat the same old bowl of protein oats for breakfast every day to make BG response more predictable.
For long-distance running and cycling: These always cause a drop in my blood sugars, which I will prevent by either reducing the bolus for the meal prior to the workout or by having a 15-carb snack just before the training session. Most commonly, I will go for a session straight after breakfast, reduce my meal bolus by 20%, have a bowl of oats with berries and go. This will hold me stable for around 1.5 hours of cardiovascular exercise.
For spin & boxing classes: For me these classify as HIIT training, and will spike my blood sugars. Prior to the session, I will either eat a 5-10 carb protein bar piece with 0.5u of insulin or do my regular bolus for my oatmeal breakfast, if done in the morning. After the workout, I will have another 10g snack to catch the drop. Insulin sensitivity still increases during HIIT, despite the hormonal response, so be careful not to inject too much insulin prior to training.
For resistance gym workouts: I tend to need my regular bolus for my oatmeal in the morning. While I get to the gym, the food will already settle in and the insulin will still be active. This helps eliminate the spike. I also do a longer cardio warmup to make sure that I start in the lower BGs, and have some space to rise from the training.
We’d just like to say thank you to Daria for her contribution and please get in touch if you have any questions about this article or would be interested in contributing to it in the future.
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.
The Why?…
I wanted to provide academic foundations for why this incredible community continues to grow, support and enhance the lives of those who are involved. Academic research remains at the forefront of change globally and I felt this was the right way to try to influence leaders across the globe, into considering how the narrative for Diabetes care should not be completely focussed upon medical enhancements and technology, in improving the lives of those with T1D.
The How?…
The research I conducted involved analysing some of the online content of blog posts, Facebook posts and tweets as well as interviewing several type 1 members of the community who had volunteered their time to support with the project. This allowed me to collect a substantial amount of data to analyse and compare with previously written academic literature.
What was found…
So, the really important bit…. What were the findings? What did the analysis show about our community and how stigma impacts on members of our Diabetes football Community living with Type 1.
Well… there’s plenty to choose from.
As most people would expect stigma towards Diabetes was shown again to impact the lives of those interviewed, whilst also driving the success of particular online content, as posts which were uplifting, dispelled stigma and provided education against it, were all highly viewed and extremely important to community.
I don’t think that would come to the surprise of many involved in TDFC, however the strong feelings of discontent surrounding type 2 related stigma imposed upon those living with type 1 was an area which I was a little surprised by. The feelings demonstrated were strong and it may have something to do with the particular field the study was focussed in, Football. With Football an unforgiving sport, where weakness is often exploited and ostracised you can potentially see why some of the participants felt strongly towards a stigma bestowed upon them which doesn’t actually represent what they live with. Yet, in their eyes it affects how they could go about their business on a Football pitch or Futsal court.
But it’s there on that very Football pitch or Futsal court where one of the most surprising findings from the study really comes to fruition…
As I’ve already mentioned, the show no weakness culture, masculinity and macho approach that’s embedded in Football really pushes players to hide anything that could be perceived as a weakness by fans, players, coaches or the media. This is why for example there’s not a single player in any professional Football league in England who has come out as gay for example… It’s a perceived weakness which goes against the image of masculinity and strength within the sport so therefore must be hidden. In all other parts of society that stigma is beginning to break but in Sport it still remains, and I believe that it forms the basis of why those in our community, who strongly identify themselves as a footballer, hide the fact they live with T1D. In using secrecy as a coping mechanism for avoiding stigma, academic research has demonstrated that this may increase the likelihood of poorer self-management and thus health outcomes. This is a highly significant finding because for the first time I’m suggesting, with support from the research, that the culture of the sport I’ve grown up with may have a detrimental impact on my health, as a result of the culture within Football, which depicts difference as weakness and ultimately attaches it with negative stigma.
So, with greater identification towards football, you’re more likely to hide your condition, and in hiding your condition you’re less likely to do the right things to self-manage it. With this academically evidenced throughout this study it’s a finding which really needs much more investigation to test its transferability. Nonetheless, when I consider my own experience as young person growing up with the condition, this finding resonates very closely to my experience. I love the sport I’ve played but I now question the impact that it’s had on my mental health, choices and behaviours.
However, there are also questions that stem from this which could really open the door for some interesting exploration. For example, is this just as a result of the Football culture, a team sport surrounded by mainstream players, traditionally with a working class – middle class background? Does it differ with other team sports such as Cricket or Rugby, where the tradition of the game may encourage a different culture and demographic background? Could we also consider a difference between Men’s Football and Women’s Football? Is there a cultural difference between the genders?
But then what about individual sports? Is this an issue which disappears or lessens in individual sports because there isn’t the need to hide from teammates, coaches, referees and opposition players what you need to go through to get out and play? Would we see a different view from a T1D Tennis player, Golfer, Badminton player, runner or cyclist etc?
Although the evidence of the study suggests a significant challenge for those with T1D accessing a sporting culture where weakness is shunned, I do think we’ve seen an opportunity in the findings to help alleviate some of that strain. It’s not all bad news!
This mechanic we’ve created through TDFC has helped to bridge the gap in identification for this population. Building identity with diabetes is important, it helps psychologically, socially and with the eventual medical outcomes for the condition. The research is out there evidencing this but in what we’ve created we’ve potentially helped people identify with T1D who otherwise may not have done. Those people have been so keen to keep it secret because of their life’s interests and passion in Football specifically, that actually by linking their passion to the condition we might have helped gain their attention enough to identify themselves with T1D, seek out others with their condition and ultimately receive help which betters their self-management.
Combining this with the use of Social Media as our prominent tool for communication actually increases this likelihood too. Through Social Media you can view content, see what people are up to and get support from posts without anyone else knowing you’re looking. This ability to temporarily and intermittently identify with T1D is something I would guess has happened a lot. In these moments the individual can see the benefits they may get from associating with the community, talking to others who share their passion within it and begin to develop their identity with the condition that in the long run, I certainly believe and so does the academic literature, will impact positively on self-management.
It’s no secret the positive impact that peer support has for people with T1D, this has been evidenced for years with strong support for it in this study too. However, if you have no inclination to seek out others, or no reason to identify with your condition because your favourite thing in life actively tells you not to, how on earth would you find it? You wouldn’t. So, this study really for the first time suggests we need to create a positive affiliation to draw people to their condition and break down some of the stigma for those who find it hard to identify with T1D. Without that, peer support is not able to cut through to those who may need it the most. It has a hugely significant impact on people who partake in this kind of support but why isn’t everyone doing it if that’s the case? I think this is an area and idea which may help to uncover some of that why….
Peer support is an incredible tool that buffers against stigma but another area that comes through strongly in the study is the idea that personal experiences in life and of stigma are a key driver in identification with T1D. I think for this population of people they are more likely to experience stigma as a result of their decision to put themselves in an environment where their condition is far from embraced, actually actively shunned. Only 2 weeks ago did I experience a pretty obvious stigma related slur, and in the last year I’ve experienced stigma on 3 different occasions all of which were related to Football/ Futsal. I don’t think it’s a coincidence.
This population struggles to come to terms with their condition in the face of it. Which is why TDFC has grown, expanded and continues to do the good it does. Because it tackles and dispels stigma whilst providing a positive view of our condition, which for the first time in our lives is celebrated rather than shunned. THIS is why TDFC has been successful. I knew the reasons deep down but now I’ve taken the time to research it and understand it from a social and cultural perspective, I believe my view of our direction is far clearer for the future, whilst I really hope it can help to influence decision makers within Diabetes care to look at niche populations in greater detail, and more importantly on the impact of stigma on self-management. I’d like to appeal to the Diabetes academic community to really consider this area in the future…. The below link shows a recent poll I ran to get a feel for how it’s affecting behaviour/choices and I think the results speak for themselves:
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:
