Jon’s Story…

It’s great to be able to share a blog from another member of the TDFC team… I simply asked our squad “Who would like to write something for the site?” and Jon came forward without too much persuasion to share his story with the condition! It’s a great read so I won’t say too much more…. In his own words, please enjoy Jon’s story:  

 Image 4 (Jon)

“Having been diagnosed as a diabetic at 5 years old in the mid 80s, playing sport as a non diabetic isn’t something I have ever really experienced. I remember locking myself in the hospital toilet the morning of my diagnosis, scared of the syringe that they wanted to inject me with (we’re talking the size of a 30cm ruler!!).  Originally I was on one injection per day, and then soon moved to two; one 30 minutes before breakfast, and one 30 minutes before my evening meal. The dosage was dependant on the size of the meal I would be eating (obviously a bit harder when eating out!). Carb counting came from a big book in 3 sections; red (high in sugar), amber (okay) and green (good to eat). 

Because I was so active as a child, it was decided to run my blood glucose levels slightly higher as running about would invariably drop it down again!  If I was higher than normal in the evenings, my mum would send me on a run around the block (about 10 minutes) to get it down!  When playing football, whether training or a match, I usually had a mini mars or something similar at half time.  I’d probably have a slice of toast or a digestive biscuit beforehand.  Very rarely did I check my blood glucose levels before, during or after.  As I got older, and into my teens, the mars bars went from mini, to fun size, to full size!  Again, I relied more on feeling than actually testing my levels, and I wasn’t really challenged by doctors about this. 

At about 15, I started seeing Dr Ian Gallen as my diabetic specialist and got moved onto pens for my insulin, injecting 4 times per day.  He took an interest in the diabetes and sport, and I started to do a bit more.  Mars bars turned to Lucozade, and the checking started.  However, I would still run them higher through fear of going low during a match (something I experienced on my debut for my under 11s team!). I wasn’t aware at this point in my life that having glucose levels in range would equate to a better performance on the pitch. I was also playing hockey to a county standard, cricket, rugby and athletics.

Image 2 (Jon)

 However, through my late teens and early 20s, injuries set in, and playing time reduced. By 25, I’d had 3 operations on my right knee and one on my right ankle.  The rehab and recovery was (and is!) awful. Being unable to play meant blood glucose levels were going higher, as well as the challenging mental state of mind. When I got back to playing, I would be back to my old ways and not testing.  I’d have half a bottle of Lucozade before the game and the rest at half time. I’d have similar when training (half before, half during) and I honestly couldn’t tell you how this affected my glucose levels! Unfortunately, this lack of testing, as well as injuries, went on into my late 20s. I’d lie to the doctors, although they must have been suspicious by my HBa1C results!

Image 1 (Jon)

 In my late 20s, I met my now wife, who is a nurse. Through her nagging, and changing diabetic specialists, I started doing a lot more testing (although nothing like I do now). My pre match, half time and post match or training snacks would differ each week, dependant on the blood glucose level I presented. At 33, I finally gave in and moved onto an insulin pump, which has changed my life.  I probably test 8-12 times per day, and my HBa1C is at an all time low. Unfortunately, the injuries didn’t stop. 10 operations in the past 16 years (one on my eye due to diabetic complications) meant that I had to call time on my playing career last summer. However, I have now turned to cycling as I’m still recovering from a condition in my pelvis and hip meaning I struggle to run. Managing my glucose levels for this can still be difficult, and no two days seem to bring the same results!

So, what would I do different, what advice would I give and what have I learnt about sport and being diabetic? I would definitely say testing is so important. In later years, I really noticed how my performance on the pitch would be better the tighter my control was. If I was too high, I would feel sluggish, slow and off the pace. However, having that tight control is important all week, not just on match or training day. If it is higher than hoped, it’s not the end of the world. Sometimes it can be high and I have no idea why! Testing during a game or training is also important. There’s no shame in doing it. As a sporty youngster, my only role model was Gary Mabbutt (someone I still look up to), a professional footballer living with type 1 diabetes. However, I wasn’t aware of anyone else who I played against who was diabetic, and always thought I was on my own. Having something like TDFC is amazing, as it enables so many people to share their inspiring stories.  Just remember, you’re not alone in being a diabetic!“

Image 3 (Jon)

Upon reading Jon’s story I wanted to ask him a few questions to delve a bit deeper into his life experience with the condition….

CB: So, there’s obviously a vastly different way of controlling Diabetes in 2018 compared to when you were diagnosed in the mid 1980’s what sticks out as being drastically different?

JP: “When I was first diagnosed as a diabetic, the treatment seemed very basic.  One injection per day, one appointment every 6 months to a year, basic carb counting, no real research or good information on playing sport with diabetes, it was all generic, and given to me by doctors and nurses who a) didn’t have diabetes themselves; and b) didn’t play sport!”

CB: You mentioned in your story that you lied to your healthcare professionals… Why did you feel like you had to do that?

JP: “Sadly, I felt I had to lie to the doctors and nurses I saw as I thought I’d get told off for not testing enough.  I think I also felt that there wouldn’t be any problems if I could just keep them happy.  Long term complications of poor control and benefits of keeping close control were never really explained to me (that I can remember) until later years.  Even then, I guess I thought it’ll never happen to me”

CB: What were the difficulties you faced when injured and managing your Diabetes? Was that the hardest part or was it the mental battle with being injured as a sporty person?

JP: “My glucose levels would really rise when I was inactive.  Since a young age I’ve been active and on the go, so have always used that as something to bring the levels down, meaning I didn’t have as much insulin as I would if I was inactive.  Being inactive was incredibly hard both physically and mentally.  Blood glucose levels would go up, so I’d increase the insulin, meaning I’d then go low, then I’d have too much to eat or drink and go back up again!  This then had the knock on affect mentally.  It was hard being unable to do something that I’d grown up doing (not just football, but physical activity of any sort) and feeling like a gift you’d been given was being continually taken away was tough.  Then, as I would be coming back, I’d either suffer another setback, or get a small run of games before another injury.  (Ironically, since stopping playing, I’ve managed to shed quite a bit of weight, which would probably have helped me a little bit years ago!). So I’d have the mental side of not playing and seeing all my team mates playing and training every week, while I was stuck waiting for my injury to heal.  That combined with the glucose levels yo-yo-ing was tough to take.  Better control would have helped me with my recovery.  However, being injured did mean that I could spend more time with my family (that was about the only benefit, although I’m sure my wife would tell you that on a Saturday around kick off she’d rather I wasn’t moping around complaining that I wasn’t playing!!)  I couldn’t go and watch my team play as it made me cross and angry I wasn’t playing!”

CB: What’s been your proudest moment with Diabetes and Sport?

JP: “I feel that just continuing to play sport for as long as I have whilst having diabetes is a triumph in itself.  It should never stop you doing anything, but especially in the 80s and 90s, there wasn’t really any network or support in place if you were struggling or not sure at all.  Apart from Gary Mabbutt, there were no real sporty role models with Diabetes to seek out guidance and inspiration from. I’ve now spoken to children and adults (including one family member and a best friend from my childhood who are both active) who have been newly diagnosed and managed to convince them that you can continue life normally without letting diabetes hold you back.  They see that I can continue to participate in physical activity, so why can’t they!  It has also helped the people around them, who don’t have any knowledge of diabetes, see that you don’t need to let it hold you back, whether in sport, or just life in general.”

CB: What’s been the hardest thing you’ve had to deal with when dealing with Diabetes around football? 

JP: “Probably other people (coaches, parents etc) knowing what to do or how to act.  I was never shy about telling team mates I was diabetic, but also never shouted it from the rooftops.  As an adult, I made sure that there were a handful of team mates who knew, but as a child it was a bit more difficult.  We had one parent who was a nurse who watched her son most games, so I think that put my parents mind to rest (I didn’t like them watching me for some reason!!). My manager from u11 to u16 asked my parents about what he needed to do, and my best mate’s Dad would quite often be there (although he did go and sit in the car with my supplies because it was cold one game – typically when I needed them!!) 

Managing the control in general can be difficult; it can also be easy, but as no two days ever seem the exact same, it just adds to the fun!  I could be absolutely fine one game, do exactly the same the next, and it all be completely different.  Sometimes I‘d go too high before a game, sometimes after.  I’d always make sure my bag was on the side in the dugout fully stocked, and sometimes give a bottle of Lucozade to our keeper to put in his goal.”

CB: What would you like to influence in the future around Diabetes? What was your reason for joining TDFC?

JP: “I’d like diabetics and their families to have as much support as possible and to encourage them to keep active.  There’s no reason to let diabetes hold you back.  If I can make a difference to one person who is struggling with their diabetes, or even if they’re not struggling, I’ll be a happy man!  I’d also like to make sure that people are educated so diabetics can always have the same opportunities as others.

I discovered TDFC through social media.  I think I clicked with it straight away, wishing I’d had something like this when I was younger.  I want to be able to help and inspire future generations of diabetics, of all abilities, so that they may go on one day to inspire others!”

An amazing story Jon and thank you for sharing it with the community. 😀

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