Legends of Living with Type 1 Diabetes -Annabelle

Legend of the Lighthouse Moon by Helen Edwards coming 2nd October 2024

As part of the lead-up to the release of Legend of the Lighthouse Moon, I am sharing stories of people who live with type 1 diabetes – in particular, their diagnosis, how they felt, how they managed, how they coped, and what happened as they moved forwards, including what helped. This is because my main character Mona McKenna has type 1 diabetes. Her experiences of being diagnosed in the 1970s are based on my own diagnosis and early years of type 1 diabetes, as well as decades of working in diabetes and mental health, listening to thousands of other people sharing their stories.

Often, these are stories of loneliness, hopelessness and grief. But when you dig deeper and follow a person’s life further, you usually find a turning, an evolution, a growing up. These are all important things to share, not just for young people with type 1 diabetes, but for all of us who may struggle with something big in our lives.

Follow along for some legends of type 1 diabetes as these stories unfold. Thank you to Annabelle for kicking off this series. I connected so much with everything you said. xx Helen

Annabelle’s Story

I was diagnosed with type 1 diabetes at the age of 11 in 1977. My older brother had been diagnosed some years before me, but he was very secretive about it and never shared his experiences of being diagnosed at the age of nine. My mother was my greatest support. As she had done for my brother, she took me to appointments, and boiled and sterilized our syringes. I was embarrassed and ashamed.

We had to test our urine with droppers and test tubes. You dropped a tablet in and the colour would indicate our blood sugar levels. Orange/brown – BAD, blueish – rare and very good (low). When it was ‘high’, I was ashamed, and felt that I must have done something wrong. And I had been taught that when I didn’t get it ‘right’, a whole lot of really scary things would happen…

My biggest fear was blindness and having my feet cut off.

My sugar levels seemed to be always high no matter what I did, so when I wrote my results in my log book, I lied. And assumed that my life would be short and painful. I just didn’t want to be labelled as ‘different’, but I was.

I became far less ashamed as the years went by. But at the same time, I also began to relish in my ‘difference’. I was not going to be a ‘sick person’. I became stronger and more independent, more capable. My difference made me who I was/am and having diabetes was part of that.

The hardest thing about living with type 1 diabetes is that it never goes away, never gives you a break. With all the ‘logic’ regarding management – food/exercise/sugar levels – when things go pear shaped, as they so often do, you only have yourself to blame. At least I don’t have to deal with urine tests any more.! Technology means having to deal directly with far less body fluids! (Until pregnancy but that’s a different matter). The lack of understanding by others also doesn’t help. Saying ‘I have type 1 diabetes’ tends to get a silent response these days. And complications + other autoimmune conditions certainly don’t help.

And yet, type 1 diabetes has made me stronger. I have taken risks that I’m proud of – pushing myself beyond the limitations that others seemed to put on me. It’s made me recognise that I am physically strong, and to be proud of what I have achieved beyond what ‘normal’ (non-diabetics) manage. It has given me independence and made me capable of looking after myself, whatever else is happening in my life, I can deal with that as well as my diabetes. I am amazing!

Knowing that the doctor’s predictions could be wrong help me to cope. The reality is that I am not blind, I have both my feet, and I have lived with diabetes for 47 years. Things have become habit. Diabetes is just part of my life – I consider what I eat, how many carbs, how to dose insulin appropriately, how to treat highs and lows, what I need to carry with me. More recently we have far more technology to help us maintain better control. This means far more information, but sometimes I think that also means people with diabetes get less opportunities to build resilience and self-management skills as we become more reliant on technology and numbers.

Social media, particularly FB groups have also brought me positives (recognition, not feeling so alone, other people who ‘get it’, sharing stories, support, and realising that people have it worse…) but also negatives (people who have it worse … stories of woe and overwhelm, symptoms to fear, more related conditions, over-parenting…). It is a mixed bag and so different from when I was young and felt as if I was the only one. But sometimes I really need a break from that too. It’s enough to deal with my own issues!

I am ALIVE! I have my sight, my kidneys work, have all my limbs, and access to the subsidised medications I need. Having diabetes has made me appreciate the small things, to live in the moment, to take pride in myself, and TO KEEP ON GOING. Diabetes has in fact, never stopped me. It’s just pushed me harder.

Legend of the Lighthouse Moon is coming 2nd October 2024 with Riveted Press.

Helen xx

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