Jon Rosser: My life with Type 1 Diabetes

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

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

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

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

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

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

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

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

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

Thanks all!

Jon

Instagram: @rossergram

Zak Brown (Diabetes Week 2020): Type 1, Travel, Teaching & TDFC

I have been fortunate enough to experience living and travelling in many countries in the last 10 years since graduating from University. For anybody that is thinking of travelling, or moving to another country, you may find some of the experiences I am about to share useful. I must also stress that I am in no way a medical professional and any advice I give is purely based on my own opinions and experiences! Of course, the subject of football/futsal will feature too being a TDFC post…

As I prepared to embark on my teaching career, I took an opportunity to travel in the 8 months I had available before starting my Post-Graduate Certificate in Education. Thailand became my first choice of destination, as I saw a company offering a week-long introduction in Bangkok and a guaranteed job teaching English as a foreign language. I had also pre-arranged a spot on a summer camp in New York to do in the summer, so my plans were in place… Thailand January-April and USA May-August, then PGCE from September onwards.

Because I knew I was in Thailand for a set amount of time, I arranged a large prescription with my GP and got all the necessary jabs before travelling, which was a smooth and painless process. However, when it came to packing my backpack, I soon realised that my diabetes supplies were taking up about 75% of the space in my 65L backpack! So a tip from me is to remove as much packaging as you can – for example putting needles in a plastic wallet, as opposed to keeping them in their bulky box. That way, you still have a few clothes to be able to wear on your travels!

I could quite easily do a separate blog for each trip that I have done, but I will try to keep things brief. Thailand exceeded my expectations in every way possible and I was so reluctant to leave when it got to the end of April, but I knew I had the summer camp experience in USA to look forward to next.

Lessons learnt from Thailand regarding my type 1 diabetes… Humidity can definitely have an impact on blood glucose levels and because of the amazing street food culture in Thailand, it is much more difficult to count carbohydrates from something that is made freshly in front of you without any packaging to look at. Due to the heat and humidity, I found that even just putting a couple of units of insulin in for each meal would regulate my sugars pretty effectively. One benefit to the street food culture is that you’re never too far away from a hypo treatment! The other major challenge that I faced is not having a fridge in the apartment I was living in, so I just kept my insulin in the coolest, darkest place. The insulin still worked, but of course I keep it in the fridge whenever possible based on medical advice! The point here is that there are ways to adapt, even if everything isn’t how it usually is in the comfort of your own home or country.

Getting a waterproof bag is another piece of advice I would give – when you are going scuba diving or snorkeling you can be safe in the knowledge that your testing kit or electrical supplies won’t be flooded! They are cheap to buy in the street markets of Thailand too. Another reason why you’d need a waterproof bag is for Songkran – The festival to celebrate the Thai New Year. Held around mid-April, it consists of huge water fights through day and partying by night.

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A three-week transition period at home allowed me to order another large prescription for the supplies I would need in America and prepare my J1 visa which involved a day-trip to Belfast and back from Manchester. I was stoked when I arrived on camp to find another type 1 diabetic staying in the same bunk as me! Cole was from Pennsylvania and was in the circus department. He could do some unbelievable tricks juggling balls, batons and even knives. You could say it’s a nice metaphor for juggling his type 1 diabetes!

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In the midst of making memories during my travels, I made a big decision to postpone my place on the PGCE course I was due to start in September. I was loving life so much, that I wanted to experience more travel before settling down into a teaching career. Fortunately, the experiences in Thailand and USA were not at a detriment to my career and had actually provided some valuable teaching and coaching experiences outside my comfort zone. My sights were now on Australia, so I saved up working at my former Secondary School. Much of the preparation for the move to Australia was the same, cleverly squeezing my diabetes supplies into my backpack, leaving enough room for clothes.

However, the move to Sydney was more of a long-term one. I had no return date and was open to the idea of becoming a permanent resident if the Aussie lifestyle was too good to leave. That almost became a reality and I spent over 3 great years there. Joining a football team was an easy way to make new friends shortly after I arrived. I played for two different football teams over there, with the latter probably being my overall favourite experience being a part of a football club. Not only did we win the premier league that season and make the final 4 teams in the state of New South Wales, everyone in the team got on so well and I have never felt more comfortable being a diabetic in the changing rooms (other than TDFC where we are all diabetic!). In fact, 5 minutes before our grand final was about to start, I came down with a hypo and had used all the sugar I had brought with me. Luckily, a team-mate quickly grabbed some sweets and I was just about good to go when the whistle went for kick-off. That small gesture meant that I could play the full game, winning 3-0 and be given Man of the Match.

I first came into contact with Chris Bright from TDFC whilst out in Sydney. Having seen a Facebook post stating that they were on the lookout for players to represent United Kingdom at DiaEuro, I was determined to grab that opportunity! Having represented UK at the Junior Diabetes Cup in 2009/10, I understood how great the experience was to represent country and condition – and knowing that everybody on that field goes through the same challenges as me every day.

Not being able to train with TDFC back home in the build up wasn’t ideal, but luckily I was playing futsal on a regular basis by this point. A friend of mine in Sydney, Shane Watson knows just about everyone and everything futsal related in Sydney. From our football connections, we had a team of friends competing in leagues and tournaments. Although futsal is now really taking off in the UK, many of the TDFC team hadn’t played much futsal by the time we arrived in Bratislava 2018. Details of how that tournament went are in a previous blog here.

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Flying back home to play in DiaEuro is worth it for so many reasons for me. Playing in a futsal competition with elite players, sharing knowledge and experience around managing type 1 diabetes with team-mates, having access to the latest diabetes technology through our sponsors Dexcom and of course seeing my family and friends!

Back to the travelling aspect of living with type 1… It was straightforward for me to access my diabetes supplies at a reasonable cost in Australia. They have a National Diabetes Service Scheme (NDSS) allowing access to diabetes supplies at reduced costs. Insulin was prescribed through my registered GP in Sydney and it would cost me around $40 for a 6 month supply of insulin. Taking into account that I use two types of insulin and go through a 50 box of test strips per week, it would cost me around $500 per year for my diabetes supplies. Whenever I did return to the UK, I would get a large prescription of supplies to take back out with me and would be lucky to have the Dexcom G6 to use from DiaEuro too. Australia has a reciprocal healthcare agreement with UK, so I would encourage anyone who works over there to register for Medicare, which is open for everyone, not just type 1 diabetics.

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I am now living in Wellington, New Zealand. Things here are a little more difficult as a type 1, as there is only one brand of test strips that are funded, so I have changed testing kits for the first time in over 10 years! Due to my visa status, I don’t currently get reduced costs for my test strips or insulin, so I would estimate that it costs around $2000 for my diabetes supplies here annually until I get permanent residency – then the costs would go right down to less than $200 for the year. Due to covid-19, I won’t be going home this year and DiaEuro is also postponed, so I am just taking the financial hit on the chin and I’m looking forward to the day where I can say I am a permanent resident of New Zealand!

All of this makes me realise how lucky we are to have the NHS in the UK – as citizens of so many other countries around the world face the added financial cost of living with type 1 diabetes.

However, to finish on a positive note, there is no reason why you cannot travel the world living with type 1! A little extra preparation and organisation can go a long way. I am currently watching Race Across The World on TV, which features one contestant with type 1 diabetes and it’s great to see somebody else showing that diabetes will not stop us!

If anybody has any questions about travelling or moving countries, I would be happy to help and chat further. Feel free to e-mail me at zakdlbrown@gmail.com

Mo’s Lockdown Story (Diabetes Week 2020)

How’s lockdown been for you?

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

How have you managed to cope?

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

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

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

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

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

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

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

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

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

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

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

How has it impacted your diabetes?

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

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

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

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

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

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

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

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

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

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

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

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