Sophie
In terms of my treatment now, what has been life changing for me is my CGM (Continuous Glucose Monitor), which I wear and is synched with my phone and beeps loudly as an alert when my blood sugar falls low.
Diagnosis
I was diagnosed with type 1 diabetes when I was eight. Prior to my diagnosis, I had lost a lot of weight and was getting up multiple times in the night for the bathroom. I also had a desperate thirst, which I just couldn’t quench. My mother had taken me to the doctors about three times, but her concerns weren’t taken seriously, and she was initially just told to give me more chocolate to ensure I put some weight on. However, when she mentioned that I was so thirsty I was drinking my bath water, the doctor decided to do a urine test. Soon afterwards I was taken to see the diabetes team at my local hospital near where we lived in Southeast London.
At age eight I didn’t really understand what was happening I found it difficult to concentrate in class. I also began to lose time; one minute I would be doing something and then a few hours later I couldn’t remember what had happened before. But aged 8, I assumed that was just life. Apparently, there were a few bad school reports about me being disruptive, which I didn’t remember anything about, as I was probably experiencing low blood sugar. It was a very confusing time for me.
Treatment
I was terrified of having injections, in those days it was the big glass injections with thick needles, which left bruising on my skin. My mother did these for me until I was ready to do them myself. I remember it wasn’t possible for me to go to sleepovers because other mothers didn’t want the responsibility of having to manage my diabetes. Early on, I had many hypos at primary school, and I remember coming round from one to find a member of staff saying, “This child must have done something really evil in her past life.” Back then people said things that were totally ridiculous and unkind, as they had no understanding of diabetes. That comment has always stuck with me, but I didn’t tell my parents at the time. I still remember that dinner ladies’ surname to this day.
In terms of my treatment now, what has been life changing for me is my CGM (Continuous Glucose Monitor), which I wear and is synched with my phone and beeps loudly as an alert when my blood sugar falls low. It makes a huge difference not having to be awake checking your levels through the night. It's available on the NHS, depending on where you live. However, I’ve self- funded it since 2017 and It has completely revolutionised my diabetes care.
Diabetes and food
Having diabetes gave me a love hate relationship with food and even now I would say my attitude to food isn’t a particularly healthy one. I’m pleased that these days when a young person is diagnosed, they also address issues around food and healthy eating. Today there seems to be that realisation that when you have to be careful about what you eat, it can cause an unhealthy relationship with food – especially for a young person.
About nine years ago I decided to follow a low carbohydrate regimen, eating mainly protein and vegetables and largely avoiding sugar and starch. So basically, I follow a very low carbohydrate diet and this regimen works for me in controlling my diabetes. With far more variety and choice in terms of food these days, it definitely makes my diabetes easier to manage.
Living life
I don’t feel my diabetes prevented me from doing too many things, but my mother was quite terrified about me having type 1. I’m half Indian and diabetes wasn’t something she was familiar with, it didn’t run in the family, so she had the tendency to be over-protective, but I realise that was out of love.
As a young person I didn’t do any skiing, or extreme sports as she felt it was too dangerous. In my twenties, there was an opportunity to work abroad with my firm and my mother got very upset about it. Over the years there have been things like that, but I’ve certainly made up for it as I’ve got older.
My husband has been incredibly supportive. I had many difficult hypos prior to getting my CGM, a CGM which he lovingly sorted out, never blaming me. My hypos always seemed to happen at about four o’clock in the morning. He’s just been brilliant about it. We’ve got two children, aged 17 and 15, and I did worry they might also have type 1, but one trait I’ve developed over the years is not worrying about things I can’t control. Thankfully my children don’t have diabetes, but they are very knowledgeable about the condition and how it can affect me. I think my children might say I’m quite strict about what they eat, but they are much better informed about food. And they are very good when the CGM alarms about getting jelly babies – my go to when my blood sugar is low.
Keeping positive
To anyone newly diagnosed with diabetes I would say there’s a lot of support available, and the tech will really help you to manage your condition well. By getting to grips with diet and tech, you can live a completely normal and independent life; it shouldn’t be a case of your diabetes controlling you and preventing you from doing anything.
It’s important to understand your diabetes and how it can impact your body such as eyes, feet, and kidneys – and remember to get your health checks. In sharing my experience, I hope it will help others understand diabetes and remove some of the stigma about the condition. I can’t stress enough however, having type one diabetes is a nuisance it really is, but it won’t stop you doing anything you want to and living a full rewarding life.
