Tristan's story: writing songs helps me express emotions and raise awareness

• Felt tired and lost a lot of weight leading up to diagnosis
• Shocked when diagnosed as no family history of type 1 diabetes
• First treated diabetes using NovaRapid and Levemir pens before moving onto insulin pump in early 2019
• Uses flash glucose monitoring to record glucose (sugar) levels 
• Wants to thank volunteer Sarah for her incredible support 

Signs and symptoms

My GP gave me a 'probable diagnosis' because he read my blood glucose at 10.0 mmol/L, so he sent me to hospital to be sure. I stayed overnight and the day I left hospital, I played a gig and had pizza afterwards at the venue. 

Later that evening I started shaking and noticed I had high blood sugar levels. My mother took me back into hospital where we discovered I was on the borderline of going into diabetic ketoacidosis (DKA).

The doctors kept me in overnight on drips to make sure I was safe. I experienced my first hypo in the early hours of that morning. I recovered quickly and felt fairly confident with my diabetes, not wanting it to hold me back.

Diagnosis was a huge shock. No one in my family had ever had diabetes before. We scoured our family history to find a distant grandparent or cousin, but I was the first one. Our immediate reaction was surprise and confusion. Trying to understand diabetes and all the information that comes with it can be completely overwhelming. 

I often experience bad hypos and this makes me feel scared and alone. One night I went really low towards the end of my first year at university and became very weak. No one was in the halls of residence with me, so I phoned my mum and she called for an ambulance straight away. I overestimated my emergency glucose intake and ended up hyper later on which led to paramedics checking me for ketones when they showed up.

I had a similar experience and ambulance call out when on tour with my band a few months before, so these frequent severe hypos began to make me very anxious and much less confident with managing my diabetes.

When I am alone, the fear of having a hypo comes quickly too. So when a severe hypo comes, it can be terrifying. I write my lyrics based on personal experiences, hypos being one of them.

My band, Sunset Sunday, are about to release our latest single, ‘Completely On Your Own’, which is about hypos and how isolated they can make you feel.

One of the lines in the chorus is ‘you need to be here when I’m down,’ and refers to my own hypo experiences. The great thing is people without diabetes can also relate to this too. I find often the best songs come out of the worst experiences. 

My band’s latest single is about my experiences with severe hypoglycemia – it helps people understand diabetes and loneliness.

Support from friends and family

I have a very supportive family and my parents are always at the end of the phone whenever I need emotional help or support. Talking to family, friends and people like Sarah, keeps me positive and confident with managing my diabetes, even at times when living with diabetes feels hard and unfair.

My diagnosis was extremely well received by my friends. I am very lucky. No one ever gave me a bad time about my diabetes. I've heard horrendous stories of kids with type 1 being bullied in school for having diabetes. 

I was lucky that I was diagnosed at 18 when other young people I met were mature enough to realise type 1 diabetes isn’t my fault or something’s I’ve done.

My housemate is also a musician and is a great friend. He’s very aware of how diabetes affects me and knows exactly what to do if I have a severe hypo. He’s really calm and knows how to give me a glucagon injection if I need it. 

At the end of the day, my type 1 diabetes does not define who I am at all. Yes, I am diabetic, but that does not stop me from doing anything. This is why I chose to go ahead with starting university just two months after diagnosis, and why I still do what I love doing: music.

I first met Diabetes UK volunteer Sarah through the Taunton music scene several years before my diagnosis. Sarah goes to a lot of gigs and writes music review blogs.

She is an office volunteer for Diabetes UK and knows everything about diabetes, which I was completely unaware of at the time. I told her about my diagnosis simply because she is such a kind and supportive person anyway, so it was such a coincidental bonus that she was a volunteer for Diabetes UK. Sarah gave me incredible support and was a fantastic person to talk to about my diabetes. 

Other than my mum and closest friends, Sarah was the first person I talked to about my diagnosis, and this made all the difference, especially when I was still in a state of shock. She has a real understanding of diabetes and she’s really keen to help young people with diabetes. 

Her support went above and beyond. It led her to put on a music gig in Taunton, and through this amazing gig community, I’ve met other musicians with diabetes - it’s been a fantastic source of friendship and support.

I am incredibly lucky to have met Sarah and out of diabetes has come great things – music and friendship.