TDFC London – Quality In Care Diabetes Award Winners 2022. I can’t quite believe it. It’s been a huge team effort and after a few weeks to let it settle in, I thought I’d share mine and the team’s journey.
I was diagnosed with type 1 diabetes over ten years ago, and needless to say it was quite a shock! There was so much to get my head around, but one of my biggest concerns was being able to get back playing football. I went years before meeting a fellow type 1 and it took a long time to work out how to manage the condition while playing sport.
And then there was a breakthrough moment. I came across a fledgling initiative called The Diabetes Football Community (TDFC). I signed up to one of their first ever meet-ups, and what a journey it’s been since.
Suddenly I was playing competitive matches against other people with type 1 diabetes. In between games, team members exchanged insights about new glucose tracking technologies, different methods of delivering insulin and practical tips on managing diabetes whilst playing football. After just one match I picked up so much useful advice and diabetes life-hacks that I wouldn’t have known otherwise.
At DiaEuro 2018 we realised that there was the enough players to potentially set a team based in London and if we did so we’d be the first ever all-type 1 diabetes team to compete in a mainstream league. Hence TDFC London was formed, with the aim of providing open and inclusive football-based meet-ups for people with type 1 diabetes, and to help show that the diagnosis doesn’t need to be a barrier to participation. This diverse group celebrates each individual as their own entity. We’ve helped each other gain access to diabetes technology and referred individuals to health services they were unaware of prior to joining.
COVID-19 put a long pause on the group meeting up, but the peer support element of the project really kicked in, with teammates all sharing support and guidance in dealing with the dreaded ‘COVID-type 1 combo’ via WhatsApp. Post-pandemic, we came back even stronger, going on a winning streak to eventually fulfil our goal of becoming champions of the North London Futsal League 🏆
I work at the Royal College for Paediatrics and Child Health alongside a great team as part of the National Diabetes Quality Programme. We see first-hand the issues around drop-out rates when transitioning from paediatric to adult services. I’m convinced that projects like TDFC can directly support diabetes services in enabling self-management and help to signpost people back into diabetes services to ensure things like technology access.
My teammate Muhammed Ismail has been an amazing ambassador for the project and secretly submitted our team’s concept and achievement for this year’s Quality in Care Diabetes Awards. To our amazement, we won the Unsung Heroes award! The judges commented:
“TDFC London was an inspirational, heart-warming and feel-good entry that has offered support to a group of young Type 1s. This could be replicated nationwide. It is a great example of peer support, ingenious and particularly focusses on young men – a notoriously difficult group to connect with and an often-overlooked group.”
Much like my glucose levels, there’s been lots of ups and downs over the years since being diagnosed. However, I’m very grateful to have stumbled across TDFC and my experience with this group has been a standout highlight.
Peer support is a powerful tool for empowering those with long-term conditions. Sport is a powerful vehicle for bringing people together. Combining the two has so much potential!
It’s been a little while since we shared a blog on the website, so we thought it was a great opportunity to share the story of one of our newest members to the community… Thank you Tom for sharing what you went through upon diagnosis and we hope that your story will provide comfort and support to those who may face this in the future… No more words from us, over to you Tom to talk us through what happened.
“Football was the first sign
The last game of the 2021/2022 season was a mid-week evening fixture on the 20th April, away in a small village outside of Lincoln. A very scratchy 11 players were put together with a couple of late stragglers turning up to fill the subs bench after work and family commitments… Sunday league football in England at it’s finest. Playing at centre half, the dream of being a marauding midfielder has long been forgotten since turning 30! After around 70 minutes something happened which I had never experienced in my whole-time playing football, as I had excruciating pain in both of my calves as they cramped up. At the time, through lack of awareness and a large chunk of denial about my own health, I convinced myself that age had finally caught up with me and I wasn’t as fit as I once was! I struggled on for 10 more minutes before giving up and giving the gaffer the dreaded arm roll signal above the head to indicate I needed to come off. To add to the dismay of being subbed off, we managed to throw away a two-goal lead and concede two late goals to draw the game and consign ourselves to rock bottom of the 1st division after a long tough season! Unfortunately, our collective lack of footballing ability wasn’t the only thing to become apparent after this game.
My ‘diaversary’, as I have often affectionately seen it referred to on social media, is 18th May 2022. The usual sore muscles and cramping up in the night after a football game occurred, which I attributed to dehydration from the game that evening. I also attributed my constant thirst and then spending most of the night getting up to go to the toilet to this! I felt could explain all these things with a plausible causality to feelings after a tough game so thought nothing more of it. I carried on my usual daily routine after this, a little bit tired and run down, still thirsty and still weeing a lot! I was a teacher, and we were coming to the end of a school year, and I told myself I must be ready for a break and ploughed on through, although the symptoms never went away. I always tell people never to google your symptoms, but you never follow your own advice and one word kept coming up whenever I put them into the NHS website……. DIABETES. I was 34, fit, healthy, a good weight, no family history anywhere of Diabetes, I was sure it wouldn’t be that. I couldn’t deny that I wasn’t well for much longer and finally succumbed to pressure from my partner to book a doctor’s appointment. Casually dropping off a urine sample and having some bloods taken at the doctors before setting off on my way to work. I received a phone call about an hour later containing lots of words such as: ‘DKA’, ‘Diabetes’ and ‘A&E’. Within an hour I was sat in A&E on a drip with more bloods being taken, more meetings with doctors and no more idea what was going on! A very long and scary night at home alone followed this and a phone call from the doctor in the morning confirming Diabetes and directing me straight to Clinic 1 at the hospital. I was greeted by Diabetes Specialist Nurse and walked out an hour later with a blood glucose monitor, 2 pens of insulin and a lot of leaflets. I had never felt more overwhelmed in my life!
Getting back to football
I am never ashamed to admit I cried for most of that evening. The gravity of what a lifetime of diabetes means really is something which is quite incomprehensible at times. I was convinced footballing life was over and I was going to be confined to a life of golf! I had no idea how playing sport whilst managing diabetes worked and it was one of my first questions in my follow-up with my diabetes nurse the next week. As always seems to be the way with diabetes, it could not have been anymore inconvenient, with a house move and job move all scheduled for June! It did however afford me a summer break to get my head around living with diabetes and my body’s responses to exercise. My first experience of getting back into sport was an attempted cricket game in early June. As could be expected this went terribly and after having a very sweaty, dizzy and shaky moment whilst batting, I spent most of our turn to field eating a banana and various sweets from my pocket – there was a lot to learn! I was luckily given a libre 2 sensor around 3 weeks after diagnosis and this made the start of preseason in late June a lot more successful. I’m sure I did over 30 scans in my first session! I turned up armed with chocolate bars for some sugar beforehand, enough Haribo for a kid’s party and more water than any one person would ever need. At any opportunity I would nip off to tap my arm with my phone and check my levels. After a 90-minute session with some highs and lows it was overall a positive result. Maybe this wasn’t the end of the road for me after all! I managed to negotiate most of pre-season training and matches without too many wobbles, although the heat nearly did me a couple of times if it wasn’t the diabetes. However, after every session, there was always advice and support to fall back on from the TDFC community if things had gone wrong with people always happy to answer any questions or offer advice.
I stumbled across Chris whilst searching out other people with Diabetes on twitter, looking for insight, inspiration, advice and general empathy from people going through something similar to me. I found the TDFC twitter page and dropped it a message before carrying on my mindless scrolling and forgetting all about it. The next day I got a reply from Chris and before long he had introduced me to the TDFC community and added me to the WhatsApp group. To find a place where people had experienced the same thing or going through similar situations was a comfort and motivator. Being able to ask questions and get answers from people all over the country and beyond was brilliant. Not just on football topics but every life experience with diabetes you can think of! I am yet to make a TDFC training session and join in a kick about but look forward to hopefully making one and sharing synchronised glucose checking and hypo snacks!
From speaking to others about diabetes I realise that it is a marathon not a sprint and no one ever truly masters it. You are thrown in at the deep end on day one and must quickly adapt to the basics but with the pace at which things are moving with diabetes and technology there is so much more to learn. I recently listened to a discussion on Twitter speaking about exercise and my mind was blown listening to people talk about open and closed loop systems, basal rates, adjustments and insulin sensitivity. I’m sure it will all make sense to me one day and I am not the only newly diagnosed diabetic trying to make sense of it all.
Game one of the season has just gone without a hitch (a boring 0-0 draw) and 90 minutes at centre half was successfully negotiated. This is thanks to some of the advice and routines I have put in place with advice from the TDFC group chat and the post which Chris had done on the TDFC website which helped a lot. I’ve managed to keep my sensor on which I thought would never happen and have had great support from my teammates! I’m hoping I have a few years left in me yet……”
Thank you for sharing your story so openly Tom and If you’ve enjoyed reading this blog and want to share your own story with us please do get in contact with us…
“In some respects what I am about to talk about is not a day I want to remember, however TDFC founder Chris Bright made me think about the experience in a different way.
I am currently playing my first season of futsal for Bedford Futsal Club who are in the Women’s Super Series South. Our season got off to a great start with a strong win & I even bagged myself a hat-trick, however our second game of the season stepped up a level…
The day itself brought a lot of new challenges that we all as a team had to try and combat. For instance, playing a very strong opposition, having crowds back and being streamed live on TV with BT Sports.. yes BT Sports!
On Saturday 9th October I was lucky enough to be the first female type 1 diabetic to play competitive futsal live on BT Sports (as far as I am aware… definitely reach out if you know differently!!!).
The Lead Up to the Game
The day before was sensor change day, something I’ve never had problems with.
I applied my sensor as normal, however, once set up was complete I received an error notification reading ‘replace sensor, sensor not working’ – luckily, I did have another sensor with me as I get two a month. So I thought no stress I will just replace the faulty one and as I’ve never had this issue before it must be a one off. After applying the second sensor and after checking my levels once or twice I got the same error message – what are the chances both sensors didn’t work??
The panic started to kick in – I am not going to be able to control my bloods as I would want to for the big game tomorrow without my sensor. Fortunately, I was able to go and purchase an additional sensor from a local pharmacy which thankfully worked. I was however very conscious of the accuracy given my experience that day, therefore I was sense checking my sugars with a finger prick for the rest of the evening to gain confidence.
On The Day..
I hadn’t had a great night with the blood sugars, I often go to sleep with bloods in range to find them spike in the night, which is what happened the night before the game. I woke up around 2/3am by chance and had a correction dose as my blood glucose levels were rising above 15mmol’s. As you can see from the below graph this started to kick in but as my bloods dropped back into range it spiked again. I then woke up just before 6am and saw my bloods were too high yet again so I decided to do another correction dose, hoping to wake in a couple of hours with much better glucose level.
When my alarm went off around 7:30am my bloods were dipping into the low territory, which I treated with my usual carton of orange juice. I then had a decision to make as it was essential I got my levels under control for the day.
We had a 2:30pm kick off which in itself adds complications and decisions to be made around when I would need to fuel up for the game with potentially 2 meal times to squeeze in whilst also ensuring my bloods were under control from the get-go. As I had just treated my low sugars, I was conscious of them spiking if I had breakfast straight away – so I decided to hold out and just pack breakfast for the journey.
To help relax before the game and give the legs a good stretch beforehand we decided to travel up early and catch some of the earlier games. We wanted to familiarise ourselves with the settings, try to squash the external pressures and settle the nerves.
I had read a very interesting blog only days before from a type 1 who ran the London Marathon (who I now know to be Scott Burrell (what a legend and don’t miss his podcast about it by clicking here) who had experienced the negative side of adrenaline and added pressures of big events on blood sugars, leading him to not be able to bring his levels down to perform at his best.
This was playing a lot on my mind in the lead up to and on game day.
As I had held out on having breakfast my bloods started to drop during the journey up to Birmingham, so I decided to treat this again with the trusty orange juice carton and one Weetabix.
My bloods started to rise again ahead of the warm-up, so I did another couple of units as I know my bloods tend to rise once I start playing. This seemed to eventually start to work, however, the adrenaline mixed with the usual during exercise spike still managed to creep in across the second half of the game.
I didn’t feel the impact of this movement as I was very focused on the game but on reflection I probably could have benefited from another unit or so whilst I was off the court.
Overall, considering the occasion, I was fairly happy with my blood sugars, however, I wish the lead up to game day and previous night’s levels were a bit more in control as I know the middle of the night highs, and the corresponding lows, have an impact on my body throughout the following day.
After a tough game and unfortunate result, the day ended with a huge spike in sugars from the evening meal that I consumed post game to drown the sorrows.
There are definitely some learning points I can take from the day to help me move forward if we are lucky enough to be on live tv again in the new year.
When I take a step back, I am extremely proud to have had the opportunity to play live on BT Sports and will continue to work hard to have that opportunity again.
Having type 1 diabetes does add a number of extra daily considerations and decision points, but I will never let it hold me back from doing the things I work hard for. “
Louise is part of the TDFC Womens team leading the push to provide more education, support and opportunities for girls and women to get more from their Football and Futsal, whilst living with Diabetes. Get in touch if you’re interested in finding out more!
I attended my first TDFC session in July following an introduction to the project by Mo who found my Facebook profile on a Type-1 diabetes page & saw from my profile photo that I was a football fan.
I have been a Type-1 diabetic for over 30 years and could probably count the number of fellow Type-1’s who I have met during this time on one hand. However, during the challenges of the past 18 months and after experiencing some side effects caused by diabetes, the want & need to meet with people going through similar life experiences was heightened. The TDFC project provided this; the fact that everyone also had a passion for the sport I have loved for the past 35 years was a bonus!
In a strange coincidence, one of the other guys who was also planning on attending the session in July lives literally around the corner from me, a mere 7-min drive away! Buncy and me agreed to travel the 2.5hrs to Worcester (from Berkshire) together and got to know each other through an exchange that covered blood glucose levels, diabetes management, hypo symptoms and of course, football. Turns out Buncy is a Watford fan, so there was much fun to be had….
Once we arrived into Worcester, I found the meet & greet/get to know each other session really powerful. I have not before realised the benefits of such a session. They empower people to work to solve their own problems. Everyone in attendance are equals and I felt that this made people feel much more comfortable opening up about their diabetes journey and related experiences. After a very tough last 18 months with Covid & the various lockdowns, I believe that sessions like this can reduce any anxieties, whilst improving self-esteem, and providing a sense of well-being overall.
The actual training session was itself a surreal experience. Playing futsal/football with other guys who were flicking their phone across the Libre on their arms to monitor their BG levels every so often whilst having conversations about various diabetes management strategies adopted for a rigorous football/futsal session was something I hadn’t seen before. Somehow, it almost seemed ‘normal’ to take mini-breaks to take BG readings and to read them out to the group with no judgments made. I personally awoke with a BG of 12mmol so spent the whole car journey up trying to get it to a suitable level, but I did too much of a good job of this and ended up starting the session with a 3.3mmol highlighted in red flashing up on my own phone via my Libre. Thankfully, there was an assortment of glucose options supplied to support the treatment of a low BG.
I have been playing a decent standard of football for over 30 years, but futsal is a very different game; more tactical, more structured and more intense with less time to recover from a period of attacking or defending. Having put in a couple of additional pounds during the lockdowns, I’d admit that I need to better prepare myself to suitably compete for the next session! The standards were pretty high and were refined by the guidance and coaching of Brighty, culminating in a very good team goal during the actual practice match. Thankfully, the goal was scored by the team that I was on…
After a competitive and enjoyable session, I managed to join a couple of the guys for a quick ad-hoc lunch before we all departed for our return journeys home. We all shared some more stories on our diabetes journey. A couple of the guys were newly diagnosed, so it was empowering for me to share my own 30 year story of diabetes & to highlight what I had achieved, both personally & professionally to send a message that diabetes shouldn’t hold you back.
Personally, for me, the whole experience was humbling, empowering & enlightening whilst providing a much-needed boost to my mental mindset. I also got to find out that I ‘wasn’t the only type-1 in the village’….
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 – firstname.lastname@example.org
We look forward to hearing from you and are excited to watch the TDFC Women’s journey unfold…
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”.