Six years in recovery

It’s my 6 year “diaversary” today. 

6 years ago I had an unexpected and unwelcome diagnosis of Type 2 diabetes.

The kit I came home with from hospital

I had gone to the doctor because I had pains in my legs. I had been on a flight on a small plane and at the end of the flight I could barely walk as my legs had been constricted for over an hour. I went to the GP who looked at me quizzically and told me to come back for blood tests.

I went and had blood taken on the Monday. At about 9.30am on the Tuesday I had a phone call from the GP surgery and told to come round to the surgery immediately. When I got there I was told I had a very high blood glucose level and was sent to hospital. 

I was told it was very serious – the only thing I enjoyed hearing was that they didn’t know if it was Type 1 or Type 2 diabetes because I was “on the cusp of being young”! I was 38 years old. It felt good to still be on the cusp of youth.

As I sat in the hospital my blood glucose levels were checked hourly and they started to fall, which ruled out Type 1 diabetes. The following day I saw the diabetes nurse and a consultant. I came home on two types of medication, one of which meant I had to check my blood glucose levels regularly.

My Hba1c, the measure of glucose in my blood over the preceding three months, was 91 at diagnosis. It was over double the level regarded as normal or safe, which is 42.

When I returned to the consultant 3 months later my HbA1c was down to 43. I discontinued one of the medications; the one that often made me hypoglycaemic. After 6 months, in June 2015, my HbA1c was 39 and I was discharged from the diabetes clinic at the hospital.

My HbA1c has not been above 40 since I was discharged.

In those six months I had changed what I ate. I reduced my carbohydrate intake considerably. I lost 10kg in weight, about 2 and a half stone, which was over 10 per cent of my body mass. I was still taking daily doses of metformin, which is one of the most common pharmaceutical treatments for Type 2 diabetes.

In June 2018, after regular HbA1c scores of 40 or below, I halved my dose of metformin. In January 2019, after checking with my GP, I stopped taking it altogether.

Since then I have lost my dad, supported my mum through her bereavement, and experienced ten months of pandemic life. My Hba1c was 38 in the summer of 2020, and my most recent score, received last week was 38 again.

I was surprised to score 38 again as I was expecting it to be higher. In hindsight I could have maybe eaten more mince pies at Christmas, given my HbA1c score.

So, what does this all mean? Well, Type 2 diabetes does not have to be a permanent condition. I have had a non-diabetic HbA1c for 5 and a half years. I don’t feel like I’m special or unique in terms of my metabolism. I feel if I can achieve this, then other people could as well.

But I have wondered a lot why I have been able to do this and so many people don’t. I think there are some things that really helped me to achieve this.

One of those things is a sense of personal agency and a lot of support to change. My wife Cathy has really helped me as I sought to change my eating habits. She became carb-aware alongside me. I was already in the habit of checking food labels from being vegetarian, so looking at carbohydrate levels in food wasn’t a completely novel thing. 

I received some diabetes education, which my employer allowed me to attend, and that helped me in my appreciation of what carbohydrates did, and how much carbohydrate I should be eating.  I am literate and retain information that I have been presented with, so was able to learn about diabetes and some of the things that affect blood glucose levels. I realise lots of people don’t have positive feelings towards education and maybe struggle to process new information.

I felt I could change and I did. Not everyone has that freedom.

When I was diagnosed I usually walked to and from work, about 20 minutes each way. In the morning I walked faster than in the evening because I was always a little bit late. Once I started regulating how much carbohydrate I was eating, that daily walk really helped me shift the weight. It’s not easy to lose weight, but suddenly having to buy new trousers because I’d lost 4 inches off my waistline and buy t-shirts in a medium instead of XL felt good.

Something else that contributed was being proactive about my healthcare. I make appointments to get blood tests and other various checks done. I don’t just wait for my GP to get in touch. It’s my health and I take a proactive role in managing it. Talking to the practice nurse, and the different GPs in my surgery, not everybody does that.

I also had a blood glucose monitor – given to me to help manage the effects of my initial medication – which I have used a lot over the years. It’s useful to know what is happening in your bloodstream but I know the majority of people with Type 2 diabetes aren’t given a monitor so have no way of checking.

Six months after my diagnosis I started a new role working in the NHS supporting a clinical network caring for people with diabetes. I have absorbed a lot of information about diabetes in that time, the causes, the effects, how to live with it. I have met a lot of people who have inspired me in my own challenges. Some have become friends. Some have become more like family.

There is a stigma attached to Type 2 diabetes. Media stories and online commenters often blame people for bringing diabetes on themselves. I have been cautious about talking about it, sometimes not wanting to tell people, for fear they would equate my illness with poor life choices, moral failure, or weakness of character.

A chap called Paul, who has Type 1 diabetes, helped me rethink weight gain. Fat is just stored energy. Our bodies are very efficient at not wasting energy and storing it for later. My body was doing a very good job at laying up stores of energy for use in future lean times. But those lean times never came.

So when I put on weight, it wasn’t that my body was somehow failing. It was that it was too good at doing its job! I was too efficient for my own good.

And that’s why I got diabetes. Because the blood cells brought glucose to the muscle cells and said ’Hey, do you need any energy?’ and my muscle cells looked around and saw all the stored fat and said ‘No, we’re good, thanks.’ And so the glucose-energy stayed in my bloodstream, unneeded, and the body had to get rid of it another way. (Which is why I needed to wee a lot!)

For me, looking at weight gain as efficient use of energy – and diabetes as the result when the body has been really efficient with energy – is a much more positive approach. It means I need to reconsider the energy I am putting into my body, the amount of fat and carbohydrates in my food.

That’s a mindset change that cuts through the stigma that other people try to attach. I’m not sorry that I have a superbly efficient metabolism. I make no apology for learning late that I need to monitor my inputs because I have a superbly efficient metabolism. At least I learned it.

And an approach I’ve developed myself to describe my current state as a person with diabetes and a non-diabetic HbA1c is not to use the word ‘remission’. It sounds too medical and, again, as if something has been done to me to cause remission, rather than it being something I’ve done to myself.

I prefer to think of it as recovery rather than remission. I am a recovering diabetic. Like someone who is in recovery and is sober, it’s a choice every day. A choice of what I eat. Some days are easy. Some days are not. But the choices I make today determine my overall health both now and in the long-term.

I am six years in to my recovery. I have kept the weight off and I have kept my HbA1c at a range where healthcare professionals have told me that I don't have diabetes any more. I just smile at that. What they mean is it doesn't show now. And I want it to stay that way.