It was at the age of 30 that I was told I had proliferative retinopathy. I remember thinking I had winged it for too and now I was going to lose my vision. However, I was also cross that I hadn’t got the support I needed from my doctors. 

I underwent extensive laser surgery but continued to experience bleeds every few weeks. As a result, my vision was blurring and I was struggling to see. After significant delays, I underwent a vitrectomy in both eyes. My right eye is now fine but my left eye is permanently damaged. This interferes with daily life, which can be really frustrating. It’s also a constant reminder of what I’ve been through. 

Sadly, my employer wasn’t very compassionate and I ended up having to resign on medical grounds. I also needed to stop driving, which felt like another part of my independence I had lost.

I probably wasn’t the best at taking care of my diabetes in my teens. I always took my injections, but I did drink and eat whatever I wanted. It wasn’t until I got into my early twenties that I decided I needed to pull my socks up and look after myself better.

I got married in 1998, and I’d been sick a few times that year, but I didn’t think anything of it. The following spring, I was sick every day for about three months. I was in and out of hospital and was even referred to a psychiatrist because they thought I was making myself sick because I was traumatised by my mum’s early death.

Late that summer, when I was 25, a doctor told me he thought I had gastroparesis. I’d never heard of that, so when a test confirmed it, I was relieved to know that my illness wasn’t in my head.

Gastroparesis a long-term complication of diabetes that can be caused by fluctuating blood sugars causing nerve damage (neuropathy). Damage to these nerves can result in gastroparesis, where food isn’t moved out of the stomach as quickly as normal. It’s thought to be the result of a problem with the nerves and muscles that control how the stomach empties. Symptoms of this can include bloating, constipation, diarrhoea, having pain or discomfort in the upper part of the tummy, and feeling or being sick. Having gastroparesis means your food is being digested slowly, and at unpredictable times, which can affect your blood sugar levels.

When gastroparesis flares up, it can last for anything from 24 hours to six months.

Living with my complication

When I was diagnosed, the reality of what gastroparesis actually is hit me. I had a really nice nurse at the time, the sort of nurse who would get down and hug you, and she said, ‘you’ve got this complication, it will change your life, but you can’t let it ruin your life.’

I remember sitting on the hospital bed thinking, ‘is this how I’m going to feel all the time? Am I going to be sick all the time?’

For the past eight years, I’ve had botox injected into my muscles every ten weeks. The botox kind of ‘paralyses’ the muscle, to prevent it from clamping shut.

Technology, science and research moved on – but sadly not enough. Eddie died from diabetes aged 26…more than 25 years ago. In the last couple of years of his life it was a struggle to control his diabetes and, while he was generally healthy, his hypos became harder to recognise and respond to, particularly at night (which we believe was a side-effect of the move to human insulin).

He died alone at home in his sleep while my parents were on holiday. We will always miss him.

Because of the complications with my diabetes, I’ve had problems with my eyes that has required laser surgery in the past. I had a cataract operation on my right eye the week before lockdown and was supposed to be having the same procedure on the left eye, but that’s now had to be put on hold.

The first operation was incredible; two hours in the hospital and 24 hours later I had perfect vision. So I just keep in mind that although it’s frustrating not knowing when my surgery will be rescheduled for, I know that it will happen and it will be brilliant when it does. 

I’ve also had similar problems with my leg. I was fitted with a new prosthetic a few weeks ago and was due to be going into the clinic for my final adjustment. However, my appointment was during the first week of lockdown, so it had to be cancelled. The team there have been brilliant though, and said I can phone any time if I have any major issues. I know adjustments need to be made but there’s nothing so terrible that it can’t wait.

In his 30's my dad was diagnosed with diabetes and was desperately ill. He was diagnosed with type 1 diabetes, which my dad always said was very rare to be diagnosed with this at that age.  
 
Due to being off work really ill, my dad was fired from his job. It was a tough time for the family. Even scarier was being a teenager and seeing my dad going into hypos.  One time people walked by him thinking he was a drunk, in the middle of the pavement when in fact he was having a hypo.
My dad got another job once he was on his feet and worked up until he had a stroke. He kept fighting. Several years later, he had another stroke on the other side and was left paralysed. It still didn't stop him.
 
In his sixties, in a wheelchair, he had another complication and ended up in hospital where he developed sores in both feet. He ended up bedridden for a full year, with both legs now infected.

My mum passed away and though he tried, he could not go to her funeral due to the severe pain. The doctor advised us that he needed his legs amputated and that this could kill him. He consented to the removal of one. He developed pneumonia and died 7 weeks after my mother.