Whilst at an eye clinic appointment, it was detected that I had fluid build-up in my left eye. I was told I needed injections for diabetic macular oedema - a form of retinopathy which requires injections into your eye. I was really scared about the actual injections and the thought of going blind.

My family could sense a change in me as I was on edge and quieter than usual. It was an anxious time for me, it just never got any easier, but I did it for the good of my health. I’m not someone who talks about how I’m feeling, so it was a lot to deal with alone.

I do worry about diabetes complications, especially with my eyesight and in my legs. My dad passed away young from type 2 diabetes complications, and that plays on my mind. It’s hard to deal with those worries along with everyday life, like work, cost of living and moving house. But knowing there’s support online and having services like the Diabetes UK Helpline really helps.

Eye screening

The importance of eye screening for me is about catching any eye problems early before it does any lasting damage, which personally is a good thing. 

"From my experience, going to my eye screening appointments has benefited me greatly and prevented me from losing my eyesight."

As a result of eye screening, they discovered fluid build-up around one of the retinas of my eye, and they diagnosed me with diabetic macular oedema.

I also received laser treatment to deal with a new blood vessel that formed, preventing any further damage to my eye. I would say that eye screening is giving me the confidence in retaining my eyesight, as any likely complications are being picked up at an early stage. I’m very pleased that eye screening is in place for people with diabetes to give our eyes that specific monitoring and attention to ensure we can maintain our sight.

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."