Disclaimer – Some of what you’ll read in Scott’s journey portrays difficulties, mistakes and challenges that have shaped who he is. As human beings we cannot go through life without making difficult decisions, but through doing this, we learn and evolve into who we were meant to be. But please be warned that some of Scott’s journey touches on some of those difficulties, mistakes, challenges and emotions that some may find tough to read.
It’s an extremely powerful, emotive and truthful account of how life has been for one of our own and we hope you enjoy the read.
Over to Scott to take us on his journey…
“My name is Scott Burrell, I’m 31 years old and have been a Type 1 Diabetic for 20 and a half of those 31 years! I remember my diagnosis day/week incredibly well considering I was only 11 years-old. It was the October half-term (so yes strictly speaking I’ve been T1 for longer than 20 and a half years now!) and I wasn’t going down to the village green to play football with my friends. I hadn’t been on any day of the break as I’d been laid on the sofa at home, this was very much out of character as usually I would be down that green every single evening in the summer and every day during school holidays playing football. I was drinking ridiculous amounts, drinking things I would never usually drink and even at one point freezing fizzy drinks (all full sugar in those days!) in an attempt to ‘freeze out’ the acid! The crazy mind of an 11 year old child! It had got to the point where I was going for a drink every 5-10 minutes and going to the toilet 6 or 7 times an hour. My parents called a doctor out on the Wednesday night as I had deteriorated again quite quickly, I did a urine test which was no problem at all as I was going to the toilet so regularly and as soon as that was done the doctor advised my parents to take me to the hospital ASAP. My dad drove the three of us to Pilgrim Hospital, Boston, Lincs (fantastic hospital for T1 care by the way!) and before I knew it I was on the ward strapped up to many drips and cables looking very much like a scene from Casualty was about to be shot…without the tomato sauce for blood! My mmol on the finger prick was 34.7 (normal range between 4 – 10 mmols ) and I was diagnosed T1 straight away. I don’t recall having ever heard the word diabetes before let alone having any idea what it was.
I remained in hospital for the next four nights and left on the Sunday. I’d had to take on so much information during this time I’m sure like everybody in this situation. I remember not being allowed to leave hospital until I’d done an injection myself, I was desperate to leave so reluctantly did one into my right quad which was a favoured injection site of mine for many, many years. This was so horrible and painful but the price I had to pay if I wanted to leave the hospital ward. I was on a twice daily mixed insulin, Humulin M3 and took this before breakfast and before evening meal. It combined 30% fast acting and 70% long acting. My parents were advised to practice on each other with water and I was told I could gain practice by injecting into an orange! I’m sure times have changed an awful lot now!
I would say initially I was doing pretty well as a T1, I tested fairly regularly, always logged my results in the log book, never missed an injection, tried as best I could and my hba1c was always in the 6-8 range so fairly acceptable. I hid my diabetes as much as I could. I always had breakfast and dinner at home so had no need to take any insulin to school with me and this suited me, I was different. As far as I knew I was the only T1 in my year and possibly in the school at the time however if there was another keeping it secret like myself then I wouldn’t know anyway. I had told a couple of close friends that I’d been in hospital and that I now had Type 1 Diabetes but similar to myself none of them had any idea what it was. The teaching staff were aware and I remember the first time I had to discuss this with a teacher, I was petrified. I was in the changing room for PE and was told by the hospital to have a fun size Mars bar before any sport, of course eating was banned in school classrooms and changing rooms so this would have been very out of place. I asked the teacher as quietly as I could if I could have said Mars bar because ‘I have diabetes’ and was greeted with a yes straight away. I tried to conceal eating this as much as possible from the rest of the group and seemed to succeed in doing so. This doesn’t seem like a lot but for me it signified difference. I didn’t want to be different. I wanted to be a normal 11 year old!
Fast forward a few years and I struggled during my teenage years with T1. I thought I was invincible and that it wasn’t something I needed to be concerned with. I very rarely tested, at my worst I did maybe one or two finger prick tests a month at times when I had played football, all other times I would just disregard testing. I didn’t think it was relevant, I didn’t care what my glucose levels were. I did however take my injections and never missed a single one. Before any appointments at the hospital with the DSN I would just make up readings (different coloured pens for authenticity of course!) in my log book and if I felt myself going hypo I would just eat, usually chocolate as we were told that was good for hypos then or Lucozade tablets which were very similar to the Lift tabs now. I recall one poignant day was actually on a family day trip to London, I would have been about 13 years-old at this point and we were in McDonalds having dinner, my dad had ordered a selection of items and we were to take what we wanted from the table in the busy upstairs seating area. I went to the toilets to do my injection only to find that they were out of order. I went back to the table and just sat down, I didn’t take any food and started crying. My dad was asking me what was up, but I didn’t answer, I continued crying and was very upset. I had nowhere private to inject so therefore made the decision that I would just not eat. I was that insistent on keeping my diabetes a secret I wasn’t prepared to sit in a restaurant and allow people to see me doing an injection, that’s not normal, or so I thought aged 13. Jumping ahead slightly here, I later found out much later that a lot of my injections were almost a waste of time anyway as I was injecting into non-recommended sites on my body. Looking back, I would imagine I was high (mmol above 10) for a majority of the time. If/when I did do an injection into a ‘good’ site this would bring me back into range as I seemed to be injecting quite a large amount of M3, way more than what I needed in reality, 40 units twice a day. In today’s MDI terms that worked out to be 56 units of slow release a day and 24 units of fast acting…far too much insulin for a skinny teen!
I didn’t want to be seen as different, I hid T1 from my life as much as I could, I would only ever inject in private and didn’t want to know about it as much as I didn’t want people to know I had it. This really was a complete car crash in how to manage Type 1 Diabetes.
In my late teens and early 20s not a great deal had changed. I was still hiding my diabetes as much as I possibly could, and it was still affecting my life in a negative way. I would tell anybody who absolutely needed to know that I was Type 1 such as employers but apart from that I was still very shy and reclusive about talking about it, showing any sign of it in public or acting on it in public. I have way too many hypo stories from this age bracket and I’m going to explain a couple of the most ridiculous. I say ridiculous in the sense of looking back now and realising how different things could have been had I been more open about having Type 1 Diabetes, of course at that age I still wanted to be seen as ‘normal’, I was just the same as everybody else….I was invincible! Mentally I wasn’t strong enough to accept I had diabetes. When I was around 19 years old a good friend of mine was managing the local Domino’s Pizza, he’d offered me some delivery work at weekends which was ideal for a bit of extra cash. I was getting on fine with these deliveries but recall one specifically. I was driving to do the delivery but suddenly realised my glucose was dropping very low and very quickly. I never carried any hypo treatments with me in those days, I didn’t want to be different and have people question why I was carrying sweets or glucose tablets. I was struggling to find the address for this delivery because I was going hypo and having no treatments on me the only option, I had was to start eating the delivery myself. I tucked into some of the breaded chicken wing type things which really are a terrible hypo treatment as they’re a very slow release carb and that’s just on the breaded part…I had no other option though it was a case of needs must! I waited around for a little while, found the address and delivered the food, I don’t believe any complaint was made about the box of chicken wings being a few short! Looking back that was an utterly absurd moment for myself as a human, I could have dealt with that so much easier if I’d had hypo treatments in my car or on me, still fighting that mental battle of not giving diabetes the respect it needs of course I didn’t take that easy option. Going into my 20s I still had battles with myself against diabetes. It became a battle, me verses it. I’d have hypos on nights out and am incredibly grateful to the wonderful group of friends I have around me as I’ve been helped on many occasion, I’d have hypos during games of football, I’d have hypos during work, to put it simply I could have a hypo any time through lack of care. It was type 1 diabetes that ‘thing’ I refused to accept. I’m sure during these times I had many, many hypers (high blood sugars) too but of course these are less noticeable and as I wasn’t prepared to give diabetes attention, I wasn’t testing so I wouldn’t know what my levels were. In my head I thought the way to ‘win’ verses diabetes was to simply ignore it! I’m very sorry to say that on three or four occasions I’d had hypos where ambulances had needed to be called and paramedics would ‘save’ me. I always apologised profusely to them once I’d come round and felt very guilty that tax payer money was being wasted on me purely because I wasn’t strong enough mentally to accept I had a condition which needed care from myself.
In my mid 20s I had attended the regular diabetic retinopathy screening (photos to look for potential nerve damage in the back of your eyes) at my local hospital and later received a letter to say that I had the very early stages of retinopathy. This was my first encounter with any potential complication from diabetes and I became very worried. My eyesight has always been very good so to receive that was a huge shock and a big wake-up call that I must now start taking care of my diabetes. Losing my sight at such a young age was something I didn’t even want to consider. I did some research online and spoke to some other T1s I’d found online who had had the same letter and was advised that it was nothing to worry about too much as it was a generic letter sent if you had even one slightly enlarged blood vessel in the back of your eye. All you can do is keep good control and things shouldn’t progress any further. This was my first engagement with the Diabetes Online Community (#GBdoc #doc) and I was so pleased that I’d done that. This was the first time I’d ever had any contact with any other person with Type 1 and it had helped me a lot, talking about diabetes was something I’d never done before.
Just after this I’d seen posts from a guy called Chris Bright looking for people who were Type 1 and also played football. This was ideal for me as I met both criteria massively. I was a Type 1 diabetic and a football nut! I’d messaged Chris a few times and discussed his plans with starting TDFC and was thrilled when there were enough people and interest for us all to meet in person over at the now base, University of Worcester. I was quite nervous and really wasn’t sure what to expect but set off early morning and got myself over to Worcester. There were around 19 in attendance and after some introductions in one of the meeting rooms we got into the sports hall and began a well-coached session. Other than a work colleague from my early 20s I’d never had a conversation with another T1 before let alone played football with one! This isn’t an over the top saying but this day felt like the first day of the rest of my life. I’d had so many conversations with so many different people about diabetes, something I’d never ever done before. I was no longer alone, I had a support network, there were other people out there just like me, they loved football and also had Type 1 Diabetes. There were also some sections of the media in attendance and I’d ended up doing an interview for the BBC which later appeared on their Facebook page! In the space of a day I’ve gone from seeing diabetes as the enemy, something I’d let hold me back in life both mentally and physically to engaging with it for the first time and speaking openly to a TV camera & journalist regarding it! The clip itself has had over 9,000 views which still shocks me to this day, you can catch it yourself here – https://www.facebook.com/bbcherefordandworcester/videos/2003662723039459/
Driving home from that session I felt so infused, I’d learnt so much, met some great people and taken in so much information about how I can manage my diabetes better. This started an overhaul for me with the condition. I was still on the mixed insulin, the same stuff I was given on diagnosis day 18 years ago and had now seen first-hand that life would be so much better changing this. I did this and noticed a difference immediately. My control was better, I was aware of new technologies to track blood glucose which made it easier to track hypos and generally manage my condition better. I genuinely could not speak highly enough of what this session did for me. For the first time ever, I was comfortable being diabetic. I would inject in public, I would talk and engage about the condition rather than just ignore it, I would seek to improve wherever I could. Anybody new coming into my life I would make aware very quickly that I was a Type 1 Diabetic, this really was a watershed moment for me. I’d now taken control of a condition which for many years had completely taken control of me.
We had further meet-ups and training sessions with The Diabetes Football Community and I loved these sessions, great friends were made amongst the group we and we all loved the fact we were in the company of other Type 1s. We were lucky enough to be able to represent the UK at DiaEuro in 2018 and 2019, I was very fortunate to be selected in both of these squads and that for me was incredible. I was now being selected on a national level for an international sporting competition for people with Type 1 Diabetes. Three years ago, I refused to accept I had the condition, now I’m representing my country with it! Spending a week in Bratislava in 2018 and a week in Kiev in 2019 with the squad competing for the UK helped my mental health massively. I was with other T1s 24/7, seeing how they lived their lives with the condition, what could I learn, what could I do differently as well as playing futsal and having a lot of fun.
To summarise my relationship with Type 1 Diabetes since getting involved with TDFC would be quite hard to put into words. I love football/futsal but it’s completely changed my life for the better regardless of the sport. I’m happy injecting anywhere now, I’ve done injections on the Tube platforms in London, I’ve done injections on planes, I’m completely open with everybody I know and meet about my diabetes and I discuss my diabetes. Friends I’ve had for 10-20 years plus have also commented on what a positive change it’s been for me. I’ve even had the privilege of meeting a younger Type 1, Ollie Carr and having a really good chat with him and his mum about the condition. If someone had told me four or five years ago I’d be publicly speaking about my diabetes and going around others houses to do the same I’d be shocked, I’m so pleased this happened though. It felt incredibly fulfilling to pass my knowledge and information on how I manage T1 and sports to a young family.
I’ve met many other T1s through the online community and also been involved in some T1 running events which is something I’ve really gotten into over the last year. I took part in an attempt via Paul Coker and OneBloodyDrop to break a world record for the most people with Type 1 Diabetes at the Swansea Half Marathon, I somehow finished the first finisher out of the Type 1’s with virtually no specific running training and this gave me a real boost to take up running more seriously. I’ve ran with other Type 1s outside of that event and met some other amazing people through running (as well as ran with amazing people!), my diabetes has never been so well controlled because of this too. If I’d never got involved with TDFC I’m not sure I would have taken up running too so it’s another massive positive for me.
To sum up I’m proud of who I am now, I’m proud that I control the condition rather than it controlling me and I’m very happy to have met so many amazing people through TDFC. If it was not for these people and having that community, I’m not sure I’d be here today. It’s given me opportunities I never thought I’d have but most of all it’s made me a better, healthier (both mentally and physically) person and that for me is absolutely priceless.
It’s good to talk.”