Confronting a diabetes diagnosis

In 2016, Ian Castle was diagnosed at 51 with type 1 diabetes.  As a member of IDFs Blue Circle Voices from the United Kingdom, Ian admits he has come a long way in both his understanding of and new life with diabetes.  A positive attitude and a commitment to a healthy lifestyle are key for Ian so he can live a long, healthy life.  He’d also like to help others achieve the same.  Confronting a diabetes diagnosis is hard work, but success comes with rewards.

Before diagnosis

At one time, I believed I would never get diagnosed with diabetes because I thought it only affected people who didn’t take their health seriously or had problems with weight, ate poorly and did not exercise.  I wasn’t like “them”.  Physical exercise and a healthy diet have always been important.  Me?  I wasn’t going to get diabetes.  Today, I understand how ignorant I was in my earlier life to have such narrow and prejudiced view of diabetes in all its forms. I hold up my hand to that and I apologise for it.

Diagnosis

In 2016, I began to notice that I was losing weight. I was exercising intensely at the gym and feeling very good physically. Then one day things suddenly changed. I started to worry. The weight suddenly began to drop off me at an increasing rate. I was eating like a horse and yet, my body was disappearing. What was happening to me?  After a few days, I could see my ribs. My complexion seemed grey. My eyes were set deeper into my face. Finally, I decided to go and see my doctor.

My doctor performed a blood glucose test. She explained that a “normal” blood glucose reading is between 4-6 mmol/L (72-108 mg/dL) but my reading was 29.9 mmol/L (540 mg/dL)!  She told me I needed to go to the hospital at once, either by taxi or ambulance. She said I could go into coma. I made my way to the hospital as quickly as possible.  After I arrived, the medics told me they were going to put high strength insulin intravenously into both my arms. I woke up three days later. The consultant came to see me and gave me some brutally honest news.

“You are a very lucky man. If you had not gone to the doctor when you did, you would not have lived longer that another 48 hours. You have diabetic ketoacidosis or DKA. It means your pancreas has stopped producing insulin and so to stay alive, your brain has told your body to take the energy it needs from your muscle and fat deposits. Basically, your body has been eating itself to keep you alive. But the breakdown of fat and muscle creates toxins or “ketones” in your blood and these will eventually kill you.”

He continued “You have type 1 diabetes and you will have to inject yourself with insulin four times per day for the rest of your life.”  And so, began my “new” life.

Taking control

Today, more than thirty months after my diagnosis, it is helpful to reflect on how far I have come. My diagnosis came as a great shock to me, but there was also some relief that it wasn’t something fatal like cancer.  Even so, I found myself in a phase of grieving for the loss of my perfect health. I would say I went through four stages of grief (denial-anger-depression-acceptance) before emerging on the other side.

There’s a lot to say about my grief, but let me make it brief by explaining how my stages of denial and acceptance lasted much longer than either anger or depression.  I see that as a very positive thing.  Confronting my diabetes diagnosis wasn’t easy. Initially, I knew I had to make changes to my lifestyle. In my case these were more “tweaks” rather than dramatic changes. However, I was determined to make changes where they were recommended and adopt a “positive” attitude to type 1 diabetes. I looked forward to my medical appointments.  In short,  I felt and still feel lucky to be monitored so closely by professionals who genuinely care about me and want me to live the longest, healthiest life possible. Others living with type 1 diabetes don’t enjoy that privilege. How fortunate I am!

There are two key factors important for people with diabetes to lead the longest, healthiest life possible include weight control and avoiding stress. I never forget this and I act on it every day. Controlling my intake of carbohydrates is absolutely essential to be able to lower and control blood glucose levels. Therefore, since the highest level of carbohydrates in daily food portions are found in potatoes, bread and rice products, I have worked hard to control the amount of these foods I eat. When it comes to alcohol, I have learned to think of beer as “liquid bread” and have substituted it for the occasional glass of red wine instead.  Exercise and physical activities that enable me to relax have taken on even greater significance than they did before my diagnosis. I have continued to work on therapeutic massage, both as a recipient and as a giver. Therapeutic massage does wonders to reduce stress and to accelerate recovery from physical injury or aches and pains. I recommend it to everyone I meet. Also, my physical fitness regime is intense and is carried out six days per week followed by one rest day. I love it. My advice to anyone recently diagnosed is to find a physical activity that you enjoy and develop a passion for it. This will go a long way to keeping you healthy, both physically and emotionally. It can enable you to make a fresh start in your life, allowing you to embrace positive change.

My experience since diagnosis has been a very positive one, but I know that in far too many countries around the world the experiences are far more negative and indeed, such a diagnosis, if it is even made, can lead to illness and ultimately death quite quickly. This is because in far too many places patients do not have either the availability or affordability of insulin, such as we have in Europe. That is a scandal. Without insulin we die. Yet this need not be.

So, how can we help others? How can we establish some “best practice” globally and learn from different international experiences and initiatives? How can we empower diabetes associations in countries around the world? How do we make sure that politicians make tackling global diabetes a priority? How can we ultimately achieve a holistic approach and share information across borders and global regions?  These are all problems that I am interested in helping to resolve—to improve the quality of life for all people living with diabetes.