Coronavirus (Covid-19)

Advice for people with diabetes and their families

Thumbnail

Complications

High blood sugar levels can seriously damage parts of your body. Here we share stories from people who have experienced diabetes complications, or who are trying to prevent them.

Amanda stands in a garden smiling

Amanda SkingleDiagnosed with type 1 in 2001

My health got worse and I developed complications

At 28, I was working as a holiday rep in Spain where I noticed my eyesight was getting worse. I was struggling to read the fine print of booking forms.

When I came home from Spain, I had my eyes tested. I was told that as a result of my diabetes I’d developed cataracts in both eyes and retinopathy. Three days before I was supposed to leave for a placement in Venice, I was told I had to stay and have surgery to save my eyesight.

I was angry at diabetes and at that point I was starting to feel it was maybe my fault – I told myself if I’d looked after myself a bit more, I wouldn’t be in this situation.

I had to give up my job and I had two operations on my eyes. Around the same time, I also found out I had Charcot foot – a complication of diabetes where nerve damage means that when you put pressure on your foot, the bone and joints can start to change shape over time. I had to use a wheelchair for eight months.

Once my eyes were better, I started doing art lessons and when I was told I could start walking again, I got a job in a travel agent and met my other half.

Six weeks later, a routine blood test at the diabetes clinic showed that I had 21 per cent kidney function. It stunned me. At that point I wasn’t showing symptoms. It was later that I started to feel tired and sick.

In January 2017 I was put on dialysis. I felt awful at that point, although I was still working full time. That was hard. I was trying to be all happy, selling holidays, but I felt so rubbish.

I was on dialysis for 14 months. At that point I blamed myself. But a counsellor at the kidney clinic said that at the age I was diagnosed, you don’t necessarily have the mindset to be able to deal with type 1 diabetes. Yet you’re treated as an adult patient. She said it wasn’t my fault, that there are special clinics now for teenagers like me who struggle with a type 1 diagnosis.

Read Amanda Skingle's complete story
""

Julie TaylorAugust 2019

Challenges of the low-calorie diet

My motivation for doing this was my family. Most of my family on my mother’s side have type 2 diabetes and I’ve seen the results of complications such as leg ulcers. I thought to myself that I can’t face being in that much poor health so I need to do something about it. 

At the very start of the low-calorie diet I was extremely tired. I found that I had so little energy that if I stood up too quickly, I would feel a bit faint. I was working full-time and so it was hard for me to see everyone eating around me. I asked my colleagues if they could try and keep food away from me and thankfully everyone was really supportive. 

But after the first week I felt really positive and I thought to myself that the worst is over so I can keep going with this. 

Read Julie Taylor's complete story
Jayne smiling into the camera

JayneDiagnosed with type 1 diabetes aged 30

Dealing with Charcot foot

I was in and out of hospital in the following years, but it was in 2009 that I first started to notice problems with my feet. I had travelled to Australia for my niece’s wedding, and I was walking about in the heat in just my sandals. I began to develop blisters, and so when I came back home I went to get them checked out. It was only on my third visit that a different doctor said they were ulcers and sent me to the podiatrists. 

The podiatrist tested the sensitivity in my feet using a blunt pin. I couldn’t feel much, and in 2010 I was diagnosed with Charcot foot in both feet. 

I wore protective boots to support my feet, but my left foot had started to change shape and I needed surgery. So, in 2011 I had my first operation. Since then I think I’ve had about six or seven more. 

It always felt like if it wasn’t one foot, it was the other. In 2015 I developed another ulcer, and in 2017 I was told that the metal work in my right foot had come out of place. They said they couldn’t operate on the foot anymore, and so last year my doctor recommended a below the knee amputation. 

I really didn’t want an amputation and so I decided to get a second opinion. The doctor at Kings College Hospital in London took a look at my feet and said we could try two more operations. 

I had the first one in September, and the second at the beginning of November. I was quite nervous beforehand. The doctor said afterwards that it was the most complex operation he’d ever done. I was supposed to go home in between them to recover, but because it was such a complicated operation the doctor wanted to keep me in hospital to check on me. 

Read Jayne's complete story
Nicole Smiling

Nicola PflugDiagnosed at 14

Eye problems

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.

Read Nicola Pflug's complete story
Karen smiling

KarenDiagnosed with type 1 at four years old

Gastroparesis

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.

Read Karen's complete story
Brand Icons/Telephone check - FontAwesome icons/tick icons/uk