Stephen, diagnosed with type 1 diabetes at the age of 24, tells us what he has learned so far about controlling diabetes with constant glucose checking, exercise and the right attitude to life.
Hello, can you please introduce yourself in a few words and tell us about your diagnosis?
Hi my name is Stephen Mc Donagh, I am 36 and work as a chef.
I was diagnosed with Type 1 diabetes at the age of 24. I had an extreme thirst, in the end it had built up over time, but I do remember drinking a 2lt bottle of water on a 30min journey to work, and even a pint of ice cold water would only slightly quench the thirst. My mum had said it a few times to get it checked but of course I ignored it until I had a cold and felt unwell. I did attempt to make an appointment before visiting my parents but couldn’t get one on time, so I got one a few days later. When I told the doctor of my symptoms he said it sounds like diabetes. He did a finger prick test, bg (blood glucose - Carenity) was 10. 4, so off to hospital for confirmation and treatment.
The diagnosis was a bit of a shock although in ways I was expecting it. I found out at this point that my grandfather had it and I was the only one on both sides of the family to have it since him. I spent a week in hospital doing hourly bg tests 24/7. There was once or twice during the night tests that I didn’t even wake when the nurse was doing it. A diabetes nurse visited the day before I was discharged to talk about it and explain my diagnosis, gave me a meter and showed how to use it. I knew I would have this for the rest of my life but was unaware of how it would affect me. On the discharge day a nurse came and unhooked both arms from the IV lines and introduced me to the insulin pen, to which I asked her to show me how to do it. And off I went to the diabetes clinic for more education. It was great to finally get home that day now to put into practice what I’d been thought.
Were you given any other treatment? What about your diet?
For the first while I was really strict in what I ate, eating pretty much the same kind of meals every day, and kept an eye on bg returning to the diabetes clinic every 3 months for the first year. After 2 years I got on to the DAFNE (Dose Adjustment For Normal Eating - Carenity) course which was life changing at the time, because it opened up more avenues in food apart from the safe ones I’d been taking. We were told that you should be able to eat what you want as long as you take your insulin and carb count. So on one of the nights I challenged this theory by eating a bag of M+M’s. I tested bg before, then carb counted to get bolus and proceeded to enjoy my M+M’s thinking I’d be out of range, but to my surprise 2hrs later it was in range. I would advise anybody diagnosed with Type 1 diabetes to do this course it really is fantastic and so worth it for yourself.
So life went on with its many ups and downs. I have had many bad months where I have lost interest in getting good bg results, sometimes I just got so sick of it, all that has to be done.
You said that you’ve given up smoking and started exercising. How did you come to the decision?
I continued to smoke cigarettes even though doctors always asked me to consider giving them up. I actually enjoyed smoking at the time, even though I knew what it was doing to me, but in the end I think I was coming to give them up.
How it came about, was my wife and I decided to start a family, so our deal was that I would quit if we conceived and we did so the following day after the positive test. I smoked my last cigarette at midday and went cold turkey 5 years on, I haven’t touched a single one. I will say, the first 3 weeks were the hardest. It really is breaking the habit and I’ve had the odd craving over the years but they have gone away as fast as they came.
After our 1st daughter was born I would bring her on walks. I started with slow ones, then building up the pace. Bit by bit, the distance increased from 3km - 5km - 7km over 2 years, and one day I had the thought what if I ran this. The last time I attempted running was probably 10 years before and I managed 300 meters before I nearly collapsed. And again, I have slowly built it up over time from 5km -7km- 10km. Admittedly, it’s been a few months since I’ve done a 10km, but generally I try to get out 3-5 times a week and I’m happy with that. I’m no marathon runner, nor do I intend to be.
Tell us about your current treatment, and the things you find the most difficult to cope with in your daily life with type 1 diabetes.
It was during this period on a routine clinic visit that I was put forward for an insulin pump because I had shown good control and was reducing my insulin intake according to my exercise. At first there is a week with just saline solution so you can adjust to the pump, then the following week it starts for real, with just one insulin, no more daily injections. This one lasts 3 days. It takes a bit of training and getting use to. But my God, it is so worth it, the pump is great because if you eat a carb heavy meal, you can split the bolus so that you don’t forget the second dose. It just makes life easier.
I am currently taking metformin and statin to help control bg and weight as an aid to good bg results. Probably the most difficult part of type 1 diabetes is the finger prick testing. There are days when you just don’t want to, although it’s the only way to keep your bg in check, unless you have a Freestyle Libre. Once you get yourself out of this kind of thinking and get back on track with the exercise and testing and eating, well you reap the benefits with good results, weight loss, and feel like you have more energy, better moods and positive attitude, then you feel somewhat in control of the condition.
People have asked me how many times a day do I have to do the finger prick test and are always surprised when I say it all depends on what I am doing. It could be 5-15 times a day, for example: get up - check it, after a run, before breakfast, before going to work, before lunch, when a temporary basal finishes, before meal, before going home, before bed and before any other snack etc., so there’s 10 already and they are like, I thought it was only twice a day.
You’ve mentioned that you’ve taken part in several studies. Could you please tell us more about these experiences?
I was asked to participate in a 3 week study, being conducted by my diabetes consultant on “The effects of exercise on blood sugar levels”. For this I was given a continuous blood glucose monitor and pump, and a polar watch and chest strap to monitor the heart during exercise. It was brilliant to see a CGM (Continuous Glucose Monitoring device - Carenity) in action. After the study was completed, I returned to the consultant, analysed the results and fine tuned my basal rates even more. I would love to have one of these.
Just last week I was approached by another study being conducted, “The Effect of Glycaemic Excursion On Cardiac Electrophysiology”. This will be a week-long study, where I wear a special vest (much like an ECG machine would in a hospital) that will monitor my heart 24/7. I will also be using a CGM to monitor my bg during the course of the study. Hopefully all is OK with my heart as there is a family history of heart disease, if there is something found I would be referred to the relevant department by the study team.
Do you find patients organisations, associations and forums useful for people with diabetes?
I have found forums very useful and find it good to share with others and to hear their stories. My GP once said to me that continuous good blood glucose results is an art form in itself, and achieving this takes constant dedication. So I would say that doctors can advise you on so much but in the end it’s down to the individual.
What message would you like to share with other people with Type 1 diabetes?
From my own experience as a type 1 diabetic the best advice I could give to a newly diagnosed type 1 diabetic is that you can live normally. Just get your head around what you have to do, get on a carb counting course like DAFNE as soon as you can, exercise – only a small bit 20 – 30 minutes a day, you don’t have to be a Usain bolt, fair play if you do. Get the flu jab, attend yearly retinopathy tests, attend all your clinic appointments even if they take ages, go to a chiropodist yearly, go to the dentist. If you take up walking or running invest in good shoes for it, don’t leave anything to chance in your health, get it checked and finally, it’s hard, but keep checking your bg as much as possible, daily, as all of the above are affected by good/poor control. And remember, what you do today can have an effect on your diabetes, not just today, but 10 years down the road and so on. It has taken me some time to learn this so if you can take this on board then at least you have a little bit of a head start, and I wish you all the best.