Legends of Living with Type 1 Diabetes – Helen Mc.

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. I kicked off last week with Anabelle’s story. Today, I am sharing Helen Mc’s story.

Follow along for some legends of type 1 diabetes as these stories unfold. Thank you to Helen Mc for sharing your many years experience of life with type 1 diabetes. I connected with a lot of what you said and it is an honour to see where you have come from and how you manage now – congratulations on your 50 years!

xx Helen

Helen Mc’s Story

I was diagnosed aged 8 years old in November 1974, so I’ve had diabetes for 50 years this year! Neither my family nor myself had ever heard the word diabetes, so it was a complete shock. I had been getting increasingly poorly over the year before, with weight loss, lots of infections, excessive thirst and peeing, and extreme fatigue, but the family GP just passed my mum off every time she took me to see him. He said I was ‘putting it on’! I remember being so unwell and miserable. The diagnosis came after I began vomiting and lapsed into unconsciousness one night. The GP was called and he refused to come out, but luckily my family were friends with a Dr who lived locally and he came.

I was admitted to hospital and although I’ve got a faint memory of being carried in, I was in and out of a coma for over a week. I was in hospital for six weeks in total. They taught my parents how to inject me using glass syringes and reusable needles that needed to be boiled on a stove to sterilise them. Blood glucose levels were checked by dropping wee and water into a series of test tubes, then adding a reagent tablet to see what colour it went! Hypos (low blood glucose) were treated with sugar cubes or neat Ribena cordial. That tasted awful and I can’t abide blackcurrant to this day!

There was a classroom in the hospital but I refused to go. I missed a lot of school and really struggled to bond with the other kids when I went back to my junior school after being discharged from hospital. I got bullied and teased and was told horror stories about people dying of diabetes. My parents were given a strict diet book and told I was unlikely to live past adulthood without severe complications, and that even if I did, I’d never be well enough to work, marry or have children …

I didn’t find out about this until Mum told me when I was an adult. That must’ve been awful for them. As far as support, there was none. The hospital admitted me every time I so much as sneezed and offered no advice. We were definitely behind the times in our little northern English backwater, even for then. Mum found a lady whose daughter was a couple of years older than me who also was type 1 and learned a lot from her.

For me personally, I hated having diabetes. I cried when others were eating and I couldn’t because it wasn’t the strict meal time we had to adhere to. I cried when I had to eat even when I didn’t feel hungry or felt sick. I was angry when I was given a silver medical alert necklace as a birthday gift that must’ve cost my parents a small fortune. I only learned to inject myself after a lengthy hospital stay when I was 11 and a kind nurse showed me the patience. Mum fought to get disposable syringes for me then as they’d been used in hospital. They made such a difference. Later, I fought myself for a pump and glucose sensor and was one of the first in the area to be fitted with the pump. It’s not ideal but is a far cry from those early days!

When I was younger, especially in my early 20s and having changed from pork insulin to human insulin, the crippling night-time hypos were the worst. They were horrendous and I landed in hospital many times, because I couldn’t wake up and had seizures related to them. It was a very scary time and they happened despite my best efforts at diabetes management. Those serious hypos were the reason for me wanting the pump technology, because it allowed me to stop using long acting insulin at night. To this day, I won’t use that as a back-up if my pump fails; I just use short-acting insulin.

Now, it’s the failure of technology that’s probably the hardest part. That always seems to happen when I have a busy day planned! It’s hard to find a suitable site for my pump needles, as I have 50 years of scar tissue. This means the insulin doesn’t absorb properly and my blood sugars rise, making me feel terrible. Low blood sugars are also an issue, especially around any form of exercise. I’d love to be able to spontaneously go for a walk but everything has to be planned, which is never easy with a contrary Labrador who decides he wants to go out right now and not in an hour’s time when my temporary basal rate has started to work! I’m very sensitive to exercise, so my blood glucose levels drop quickly.

There are things that life with type 1 diabetes has given me. I developed my love and fascination for science from those early days. Medicine fascinates me and I now work in the healthcare field. And multitasking, because having type 1 diabetes is like having two extra full time jobs as well as the one you are doing every day! Now, if I am having a bad day, I tell myself that – a bad day is just one day. And things will be better tomorrow. My healthcare team telling me my diabetes control is fabulous, despite me beating myself up about it, and having a wonderful extended family who know what it’s like to live with this every day, help me to stay positive. Also, telling others who have children just diagnosed, that here I am, 50 years on and still mostly okay, is something that is rewarding.

**Thank you for sharing this incredible insight into 50 years of life with type 1 diabetes, Helen Mc. Note for people who don’t live with type 1 diabetes – people with type 1 diabetes are usually on a long-acting insulin once or twice a day, which tries to mimic the body’s natural insulin production, and short or fast-acting injections anywhere from 2 – 6 or more times per day. A continuous insulin infusion pump delivers a set amount at all times (the basal rate) and the person then dials up bolus doses with meals and when the blood glucose levels are higher than desired. You can also reduce the basal rate for exercise and other activities and increase it when sick, for example. The needle for the pump is changed every couple of days and the insulin refilled every few days too. Technology has certainly come a long way across the time Helen has lived with diabetes. Continuous glucose monitors also work in conjunction with pumps and provide a constant view of the blood glucose levels, which despite still being very hard work, is life changing.