Don’t forget parents on #WDD! The unrecognised heroes of children with type 1.They have to immediately come to terms with it for your future
— Gavin Griffiths (@Diathlete) November 14, 2014
There’s no doubt about it in my opinion, in being diagnosed as a child if it wasn’t for my parents support and ability to adapt to the condition instantly, I would not have achieved anything that I have done in life today for the cause.
Parents play a crucial role for children diagnosed with type 1 diabetes
Both my parents, Mother and the Old Man, did not have a clue what diabetes was back in the time of the turn of the Millennium, where the-Boy-Me came down with the distinctive symptoms of constantly having a quench of thirst and the need to urinate. Type 2 diabetes just 15 years back wasn’t as known as it is today, let alone type 1 diabetes.
They had to between them learn all about type 1 diabetes, what it meant for my health, what each day the requirements were for my health – injections, blood sugar tests, diet, exercise… they had to learn it instantly.
15 years is roughly speaking a fifth of a life-time, so in that respect, it is a fairly long time to live with something. The changes toward the world of diabetes in that time have been vast, with many developments in care. On the eve of World Diabetes Day this year I had a chat with Mother. It is incredible how different things were…
“You had to have two injections a day on that mixed insulin and it was in a pot with a syringe. In the night, I would go up and prick your finger whilst you slept. Sometimes the levels might have been hypo, so I’d have to wake you up and give you something, even at 2 or 3am now and then.”
I remembered it. I remember some nights waking up and milking it a bit, having a biscuit and some energy drink in the early hours. If Mother hadn’t of stayed up and tested me, I would have slept right through a hypoglycaemia – which is a serious risk factor. An untreated hypo can lead to, at worst case, a diabetic coma if untreated. You can’t treat a hypo yourself when asleep.
I could be a miserable git, when having a hypo. The Old Man and my Sis didn’t always understand whether I was being rude or having a low. I wasn’t a rude kid, so it was kind of obvious, but it took a bit of getting used to. Mother was always good at recognising it.
In regards to my control, I am grateful for the team I had at my local clinic. They were positive the nurses. Whereas in my early years with diabetes, there just seemed to be plenty of negatives associated to diabetes. Although they were positive, I was always under the impression my control was good. It wasn’t. My A1C has regular 8.0+% and even a 9.0 in the records. This is largely down to being on that ‘Mixed Insulin’.
Mixtard 30 and NovoMix, were the two insulins I had, one first and then changing on to the other. I believe that neither are in existence today. Basically it was a concoction of long acting Basal and quick acting Bolus insulins in one mix. It meant that I had to inject twice daily at specific times and eat my meals, 3 meals a day, at certain times also. I never injected insulin during school.
As I grew older, this progressed to 3 injections per day, morning, evening and one after school time.
Diet-wise, the instructions Mother received was to load me with carbohydrates to prevent hypos in the daytime. I’d constantly carry sandwiches with me. If I went hypo, sandwiches were the key treatment… so it is no wonder my A1Cs were not perfect, I was up and down like a Yo-Yo.
Having said that, my control wasn’t terrible. I had an understanding and did not rebel. I made sure I always took my insulin each day and I tested my blood sugars. Maybe I should have tested more regularly than I often did, but I wouldn’t go a full day without testing at least. It is largely down to my very active lifestyle which helped me keep some form of control in tact. I’d constantly be on the go, running, playing football, involved with all sports.
I generally think sport saved my life to an extent. My A1C could have been a lot worse in light of the insulin and instructions in my early DiA-life.
But I do look back at things such as football and in speaking with Mother, I was quite proud of what I achieved. To play as well as I did as a boy, in consideration to my blood sugar levels, well, it opens up speculations of ‘what if’. I would lower my insulin for the day on a football day. Now, in my sports experience today, lowering insulin for football is something I would not do. Blood sugar levels tend to spike during a football match and it is often found that blood sugar levels after a game can be quite hyper. A crash usually takes place in the hours to follow after a game, that risks the hypo. Being hyper really pesters concentration levels. So with me, reducing my insulin in fear of the exercise impact and risk of going hypo, I was actually most likely boosting the hypers during the game. And I was quite a decent player in my boyhood prime. I regularly won Man of the Match for my club Crayford Arrows and every time I played for my School. I went on to successfully get in to Dartford FC’s youth academy too. In playing well in spite of battling blood sugar levels, begs the question really, what if my levels were fully stable during and I had full control of myself in a game?! England could have won the last World Cup…
But I achieved on the pitch and diabetes never prevented that in my youth years. I’ll always be proud for doing that.
The biggest of concerns, in my opinion, was in my mid to later teen years, when I finally come off the mixed insulin and began on what I am currently with today – basal and bolus in separate multiple daily injections. The insulin itself is the best for my control, no question about it. But the instructions given back then are nothing short of disgraceful once leaving the children’s unit of the clinic. I had a daily rate of insulin to inject for my ’3 meals a day’.
To put that in perspective, my insulin regime consisted for quick acting bolus:
Breakfast injection: 6 units each morning before eating breakfast meal.
Lunch injection: 5 units each afternoon before eating Lunch meal.
Dinner injection: 14 units each evening before supper.
We are talking those units of NOVORAPID!!! And this was combined daily with 30 units of a Basal insulin injection, Levemir.
For those unaware of units in insulin, 6 units that I had for breakfast would account for 60gs of carbohydrates personally to me today. Two whole slices of bread probably make up just under 30gs…
There was a lack of education for me back then, to say the least. Through running ultra challenges, aged 17 when I started, I learned so much about my own body and diabetes. How the food can boost levels, what kinds of food last longer or shorter. How fast my blood sugar levels can drop or change, what levels of insulin effect me the most during exercise. I tested my blood sugars regularly when running and noted my recordings, to educate myself.
At the time, the Doctor said stick to this amount of insulin per breakfast meal, lunch meal, evening meal… and we listened. I could have eaten a salad for dinner and injected 14 units for it, as though it were a very large, carb-filled, pizza!
And of course, my parents were given this education. This was what seemed the right solution to my health. In the best interest of every parent, who has the biggest fears brought on them when their child comes down unwell and then is diagnosed with a serious, life-long, disease, they are going to listen to every word the doctor says. They are going to do everything in their power to keep their child well. So I do look back and think WHAT THE HELL WAS I BEING TAUGHT FOR MY CONTROL!
Eventually I went on my own. And though this was not the safest, most ideal or health beneficial process, I kept on running big challenges to support people with diabetes and through it learned so much knowledge for my own control.
The most important part personally to me was the support I had from my parents and family. Even some close friends too. At every run you might see from my early days pre-Diathlete, you’ll find loads of people there cheering me on. That was what got me through the toughest times for my control.
A warning came once, weirdly enough, from behind the grave evidently. I happened to see a Median one time, not because I wanted to, but I was staying with my cousins and aunt and they had booked a big group trip. So I tagged along. The spirit that came through, according to the Median anyway, had a message: look after your body.
My next A1C result was up in the 8s.
6 months later, it was 7.8. I recall the Doctor saying “why is your control poor?” in response to my A1C result.
A part of me fancied saying “why is your nose bleeding?” and then biffing him one. Rest assured, I behaved for once. I decided that I didn’t want to see this chap any more and re-joined my clinic. I had been 2 years without any real medical professionals support.
After completing the 30/30 challenge my A1C was at 8.0%. 3 months later it was 7.0%. 3 months after that 6.8% and then 6.7%. Unfortunately I have just had an appointment and it has climbed to 7.4%, which is disappointing.
However, I ran 7 marathons in 7 days 2 months back, toured the USA and have toured Europe. So a lot of travels, meals out (that I may not have understood exactly what was in them all!) and also a problem where my insulin in the USA went bad. So there are some excuses and I believe that I will be back on track soon. I feel that my knowledge for control, not only in sports but in general, is high standard. That is a confident statement and good… you need to be confident about your own control. I bet you all my next A1C is within the 6s and soon enough 6.5 or below!
In running marathons levels can go all over the place, especially back to back marathons to the extreme of 7 in a row, or 30… but two things: firstly I have 43 challenges worth of experience to date, I’m well capped to succeed in that respect. Secondly, I have a very supportive family and for that reason in diabetes, I cannot fail.
My message to parents out there with children who live with type 1 diabetes, just be there. That is your duty as a parent, diabetes or not. By being there for your child, of course with diabetes it brings fears, it brings pressure and worries to the core. But you are the rock. I feel in the present day carbohydrate counting is taught, better access to resources are available in the UK (and countries such as USA, around Europe, Australia and New Zealand) and developments in technology are coming through all of the time. Be strong and keep positive and your child will follow in your footsteps. Anything from there, as I hope to have proven in my accomplishments to date, is possible in life with diabetes.