Diabetic Ketoacidosis (DKA) wasn’t something we were aware of and we had not heard of ketones or a ketone meter. The night she died, Jane woke up at 3am, screaming for me and vomiting. I dialled 999 and an ambulance arrived before I’d put the phone down.

One of the young paramedics immediately tested Jane’s blood sugar – which I had also done. He took out another meter and said her ketones were very high, and that she had to go to hospital straight away. But on the way to A&E, she had a cardiac arrest and they couldn’t revive her.

The pathologists took four months to decide the cause of death was Diabetic Ketoacidosis – (DKA) there was an autopsy. I only knew when I saw the words on the final death certificate. 

DKA was a new and strange term to me. I googled it and found a huge amount of information about DKA symptoms on the Diabetes UK website. Jane had been suffering at least 75% of the symptoms in the weeks before. In the meantime, she had seen her diabetes consultant – who she got on well with, her diabetes nurse and GP. She had mentioned the symptoms but no one said anything about ketones. 

Jane had diabetes for about 20 plus years but no one mentioned the word ketone or that you can get a handheld ketone meter. I just can’t think of her dying like that and that time, possibly unnecessarily. 

"If we’d known sooner about ketones and that they were doing something nasty to her blood we might have been able to do something about it. Although we can’t say that we could have saved her, we might have been able to prolong her life."
 

I was on holiday and I was getting back into walking when I started to feel something funny in my boot. There was a blood blister underneath my toe on the right foot and it had burst. I went to A&E that Saturday and was told to see the diabetes team on Monday. But by the next morning I was feeling all hot and really unwell, so I went back and was started on antibiotics and sent home again. 

But the pain was getting worse and worse, my fourth toe had gone purple - the infection had obviously gone into the bone, and it actually got into the base of my middle toe as well. I was admitted to hospital and told they'd have to amputate. 

They also picked up a problem with the artery in my ankle. When I was in bed that night, I was thinking I'm going to have a foot off here. It's not going to be the toe. It was scary. You do go, wow, this blood blister has suddenly turned into a bit of a nightmare. 

Since then, I've spent 41 days in hospital, in total, that really has a huge impact on you and the whole family.

What kept me motivated was knowing about the seriousness of the condition and the complications that can arise from diabetes, like amputations, losing your sight, and possibly causing damage to your kidneys. Although I haven’t lost anyone close to me as a result of these complications, I do know of people who have experienced long term complications of diabetes, and that was enough for me not to want a similar outcome. There were also other health concerns, like my blood pressure, which meant I needed to make these changes.

The biggest thing for me was not being able to carry a pregnancy. I've had multiple miscarriages and I don't want other women to go through that. With polycystic ovaries combined with insulin resistance, I want to raise awareness.

I have a husband who has a child from a previous marriage and I'm lucky to have that family network with him. But until I met him, I didn't have that. And it was gut wrenching, not being able to have a family. I think my worst situation was when I miscarried at about 14 weeks. It's when you think you're safe. When I got to that 12-week mark, I started to think I could tell people and was getting ready to do that. And then all of a sudden little one was gone. 

My living situation has been difficult to deal with. I'm 45 years old and live in what is called an extra care complex. It's basically like sheltered housing, but it's got carers in house and safety mechanisms.

That's how serious it's got for me, that I can't live out in the community anymore.

It's safeguarding basically because I fall a lot. I suffer with regular blackouts, and many other complications from my diabetes including neuropathy. I also have pancreatitis.

My symptoms got so severe I became unable to sit at my desk and in 2020, I had to give up work. I absolutely loved my job on the parking team for the local council, helping people like me who have limited mobility independence. I hoped that by going part time, I would alleviate that. But, unfortunately, it became much worse. I tried voluntary work just a couple of hours a week and managed that for between six months and year. The pancreatitis then started to lead to hospital admissions and, unfortunately, I'm still trying to get back from that.