Anthony's story: all people with type 1 need to know about CGM

• Diagnosed with type 2 in 1977, aged 39.
• Has always been fastidious about maintaining a steady HbA1c.
• Realised 20 years ago that his medical notes had changed from describing him as having type 2 to type 1. He believes he is a ‘classic case’ of LADA (Latent Autoimmune Diabetes in Adulthood).
• Discovering Continuous Glucose Monitoring (CGM) in Feb, 2017, was ‘life-transforming.’
• Now a passionate advocate for CGM being made affordable for all people with diabetes, Anthony has built a website to demonstrate its benefits.

I consider myself to have been a lucky diabetic. My timing has been immaculate - every time I reach a crisis point the solution has just been invented.

When I was first diagnosed in 1977, my excellent GP gave me the good advice “with this condition you have to be your own doctor. The day-to-day management is in your hands.”

I was extremely worried in the beginning, when I didn’t know anything about diabetes. But the more I talked to people at the hospital and read Balance magazine, the more confident I became that I had it under control. As I say, I was lucky. When I went on to insulin the first blood testing sticks had just become available so from the beginning I had a means of checking my Blood Glucose.

Looking back and thinking how many wrong paths I could have taken, I think I’ve been very fortunate. I’ve had diabetes for 40 years and I’m still out running 10ks and the odd half marathon. I’m determined to run one good race before I finish. When training I have a two-mile downhill, where I go flat out and feel as good as I did 20 years ago. The only problems are when I look at the time on my watch or fall over!

When I was diagnosed my kids were 5 and 8 years, the same ages that my sister and I were when our Dad died. I became quite obsessive that I would not leave my wife in the same situation as my Mother, so hoovered up all the information I could about managing the condition and kept my HbA1c at 6.5 or under for the next 35 years.

I was quite determined to live at least another 20 years because I was so worried about how my wife would cope on her own. Of course, after two or three years, I discovered my diabetes was controllable.

Impact on work

When I was first diagnosed, I thought I’d lose time off work through sickness. But I got through the first year and hadn’t needed any time off. Then I got through 10.

We had a family drapery business and my job involved me dashing out to customers’ houses and spending up to five or six hours there. I was training director, sales director and general dogsbody. I used to do the staff training in a different shop every morning, and if we had a serious customer complaint, I had to go and sort it out. It was long hours and work at the weekends. With the help of my consultant I effectively developed DAFNE several years before the rest of the diabetic world discovered it and was able to adjust my diet to my lifestyle.

There were only a couple of times that my diabetes affected me at work. I remember once going hypo and I found difficult to stop talking to a customer and take some glucose. In those moments., your common sense leaves you and you can’t make rational decisions. My customer said, ‘you’re very pale Mr Fisher, are you alright?’ I said, ‘no, I’m going hypo, I need some glucose.’ That was the only time I remember being affected when I was engaged with a customer.

I really enjoyed meeting with people, going out and selling. I had a very relaxed last 20 years of my working life and thoroughly enjoyed my job.

I picked up early that exercise and diet were key to managing diabetes, so took up running, eventually becoming quite serious. 

One idea that I hatched up with Brian Hunter, the then head of the British branch of the International Diabetic Athletes Association (IDAA) was to run a quick London Marathon and claim it as a diabetic world record to get publicity for the benefit of exercise in diabetes.

I have a photo of me crossing the finish line at the London Marathon in 1991 and you can see some BM sticks clutched in my left hand and my finger pricker in my right after a crisis and attack of cramp at 18 miles. Unfortunately, by the time I had done the race the UK branch of the IDAA had closed.

Last year Paul Coker, who has had type 1 diabetes for forty years, recruited me and others to set a world record for the most people with type 1 diabetes to complete a half marathon. I saw this as an opportunity to publicise my website and meet a large number of fellow people with diabetes. In the end I got plenty of personal publicity as the oldest man in the race but not a lot for my website.

By now I know that diabetes is unpredictable. Continuous Glucose Monitoring doesn’t explain why, on consecutive days, the same routine has completely different results but it exposes them and allows me to take control hour by hour. The greatest scandal for me is that type 1s generally have not been told about it. I have spent the last six months building a website, bgonmywatch.com , and trying to find a way to tell the 90% of T1s who are unaware. The website explains about the 5 sensors currently available, how to obtain each one and acts as a primer in getting them up and running with all the necessary links.

In 2017, I woke from a very deep, tense dream. As I floated into consciousness, there was a figure leaning over me. He was grim and fierce-looking. I was very sad to discover he wasn’t a thug demanding my bank card, but a paramedic. I’d had my first uncontrolled hypo in 35 years.

I couldn’t afford to have another and risk losing my driving licence, so I turned to Dr Google, which led me to the Dexcom G5, which is when I discovered the life transforming effect of Continuous Glucose Monitoring (CGM). My favourite analogy is that I have been poking around in a darkened Amazon-type warehouse for 35 years with only the light from my fading phone battery to find the parcels. Then I pull a lever marked CGM and the whole building is flooded with light – every package on every shelf visible.

For me, the thing that really has changed my ease of management is having CGM on my watch. Just a glance away to warn me if any action is needed, just as easy as checking the time. All type 1s need to know about CGM, how it can change their lives and how they can obtain it. Self-funding is not cheap but there is one method that some people may qualify for that is affordable.