Life with fragile diabetes: Vanessa’s story

Do you know what fragile diabetes is? Read on to hear about Vanessa Reynolds’ lived experience.

A shock diagnosis

This is my story.

During COVID-19 I tested twice, and, like most others, I tested negative. In 2022, I started getting ill. My doctor tested my lungs as I have asthma. The lung function test showed I have emphysema. I prepared for the worst. Sent my youngest to therapy to deal with her mom’s “incurable disease”. I sat and prepared my family for the 5 years I was given. I prepared my testament and last will. Everything was in order. 

I kept getting more and more sick. From my diagnosis in February till May, our plan of action was antibiotics and cortisone. Every two weeks I was at the doctor: more antibiotics and more cortisone. The last week before my life changed, my physician tripled the cortisone. My lungs were completely closed and I could barely breathe. 

The complicated journey to a diabetes diagnosis

On a Friday in May 2022, I couldn’t get out of bed and slept through the day, the night and the next day. On that day, the 28th of May, Saturday afternoon, my husband, who kept checking on me, realized that something was very wrong. My mother is a nurse, she rushed through, took one look at me and told them to call an ambulance immediately. 

By this time I had already been in a coma for hours. I was rushed to the ER, and tested for everything under the sun. Obviously stabilizing me was very difficult. My infection rate was 45, my blood sugar reading was 46mmol/l. The ER response team battled to get my heartbeat monitored because it was so weak and the machines couldn’t find a heart beat.

The staff kept asking my family if I was diabetic. 

I was not. 

Four days later I woke up from a coma in the ICU of ZAH (Zuid Afrikaans Hospital).

I was informed that I was diabetic, and that I actually had COVID-pheumonia. The complications were severe. Kidney, heart, liver, lung damage… I underwent dialysis treatment, to protect my liver. I had every scan you can think of: X-rays, MRIs, CT scans etc. 

The short of this is that the cortisone pushed me into DKA.

I woke up a disabled fragile diabetic with Autonomic and Peripheral Neuropathy, 30% eye sight, severe asthma and multiple organ damage.  

Managing a fragile diabetes diagnosis

I now use a walking aid and a wheelchair, after only being able to use a wheelchair as I could not even walk from my bed to the bathroom. Eye surgery helped, but my sight has deteriorated again. I am no longer allowed to drive due to not being able to pass the eye test.

I am on chronic medications (there are too many to name) which are obviously very expensive. Simple things like washing my own dishes isn’t an option for me, because with the neuropathy I can’t tell if the water is hot or not. I can’t cook, as I tend to get confused and take food out of the oven with my hands. It’s easy for me to forget I cooked, so I forget it’s hot. I can’t take a bath as I can’t climb into a bath on my own, and getting out is a very painful experience for me. 

Life with neuropathy

Neuropathy has destroyed my freedom, my life. 

I used to partake in short distance running. Play with my girls and chase them around. I used to sing and paint. All of that has changed. 

Neuropathy is a terrible, painful disease and a lonely path. Very few people understand the constant pain, the feeling of how your life is getting smaller and smaller, and how limited you are. 

I have been wanting to share my life, as it is now, to warn others….. 

Diabetes is like a waterfall. Once you go over, you cannot go back. You can play in the water, and test it every day, but once you go over….

If I could leave one thing with other people with diabetes: don’t push that waterfall limit…. Don’t play with your health. I see so many Type 2s who carry on like normal, and it’s scary. You can lengthen your life by a few small changes. And if you are tired, no problem, tomorrow you start again. It’s a game of never give up. 

Type 1 diabetes does happen to older people. I am 48. My passion is making others understand that this can happen at any age. It doesn’t discriminate. Support for diabetics is really not up to standard in South Africa. It is therefore important to share your story. 

And yes, inject in front of others. Don’t be shy or scared to normalize what we go through. We didn’t ask for this, we would never choose this. 

I grow roses. That was my passion before I got ill. I have a full rose garden with over 100 roses. I also have the support of both my girls and my husband, and some special friends. 

There are two dreams that I hold onto 

One, I promised my youngest I’ll hold on till she turns 21. We pinky-promised. So every time I get down and lonely, I look at her beautiful face, and I fight harder than yesterday.

Two, one day I’ll be able to afford a CGM monitor so I can more easily observe and control my diabetes. 

As I’m writing this, I’m back in isolation, as I’m ill again. Every small bug, flu etc can have a  terrible outcome for me.

This is my life, as a person with fragile Type 1 diabetes. 

Inspiring stories of people navigating life with diabetes

Thank you for sharing your story, Vanessa!

Would you like to share your story of living with diabetes? We need to start telling all the stories of our community, so that we can reduce the stigma. Please email us if you’d like to share!

Sweet Life is an online diabetes community that empowers people to live healthier, happier lives. We do that through easy-to-understand information about healthy eating, exercise, mental health and the basics of diabetes. Read more inspiring stories and join our community on Facebook and Instagram. Or access the Sweet Life Chatbot on WhatsApp and find answers to your diabetes questions on www.sweetlife.org.za