It’s my 6 year “diaversary” today.
6 years ago I had an
unexpected and unwelcome diagnosis of Type 2 diabetes.
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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.