While I was at university, and for a number of years while I was working overseas, because I had new things going on, I fell away from managing my diabetes. I started having hospital admissions for diabetic ketoacidosis (DKA) and in 2011, when I was 26 years old, my kidney function started deteriorating. I developed swollen ankles and feet, and was constantly tired, which are early signs of kidney disease. It was only after speaking with a renal consultant that the seriousness of my condition really hit me.

In 2013, when I was 28 years old, I was told that I had developed late-stage kidney disease and that my kidneys were failing, and that I needed to consider treatment options of dialysis or a kidney transplant. My kidney function had deteriorated dramatically. In just two years, my eGFR, which measures kidney function, dropped from 40% to less than 10%. It was a steep decline that reflected years of not paying enough attention to my diabetes. In October of 2013, I found myself on the list for a kidney and pancreas transplant.

Diabetes also began to affect my vision. I underwent laser surgery multiple times to prevent blindness, a consequence of high blood sugar levels damaging the blood vessels in my eyes. I also developed foot ulcers that were slow to heal because of high blood sugar for a prolonged period of time.

I am 38-years-old and have been with my partner for almost four years. I have had type 2 diabetes for five years and use insulin five times a day.

Over the last three and a half years I’ve suffered from severe neuropathy (nerve damage), so I’m on medication for that and also take tablets to lower my blood pressure.

I first noticed my erection problems about two years ago. The desire was still strong, but when it came to the point of penetration, my erection simply vanished. In the past, I have never had any problems getting and maintaining an erection so it came as quite a surprise.

My partner and I have always enjoyed a loving and active sex life. At first I questioned our relationship. Did I still find her attractive? Was I looking at other women? Had the relationship changed in some way? Through sheer process of elimination, I came to realise the problem was mechanical.

During this period, it affected our sexual relationship up to a point, but not in a detrimental way. Even though I wasn’t always able to perform penetrative sex, she was quite happy to be stimulated in other ways.

Luckily, my partner and I talk freely about everything and we were able to discuss the problem without too many inhibitions. I reassured her it was nothing to do with her and that I thought it was linked to my diabetes.

I have a light-hearted relationship with my diabetes team so I didn’t have a problem speaking to them about it.

Treatment

The next time I was due for a doctor’s appointment, I told my GP about the erectile problems. She was very helpful and gave me a list of the drugs available and I opted for Cialis (Tadalafil).

It didn’t take long to get used to the tablets. I take one about half an hour before I think we might have sex. More than half the time I can do without the tablets, but it’s good to know they are there as a back up. One tablet lasts for about 36 hours.

My partner was very happy to give the tablets a go. She prefers me to try without the tablets, but she has no real problem with them.

I haven’t suffered any side effects and although it slightly takes the spontaneity away, our sex life is as active and healthy as ever.

In 2019, I married the ship’s purser and left the island. During the first lockdown, I was out for a run when suddenly my vision went really blurry. It was the start of retinopathy. I hadn’t been having my eye checks because I’d been on Lundy, so I had no idea. It wasn’t even on my radar that this could happen. 

The eye clinic was amazing. I had laser treatment and surgical vitrectomy, but I’m now registered as visually impaired. I used to be really independent, outdoorsy, and loved going off and doing my own thing, so it’s been a huge adjustment. 

I started spending a lot more time inside, more than I ever had before. That’s when I became an artist. I’ve always loved photography, Polaroid especially. It became a tool for me to show the way I was now seeing things. 

I applied for and was awarded some arts grants, and I started selling work. To my surprise, it’s gone from strength to strength.

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.