Living with Type 1 Diabetes
My name is Anne, and I have type 1 diabetes (T1) for over 50 years. I was just three years old when I was diagnosed. Treatment and knowledge has come a long way since then.
My symptoms were the same as any child who has T1 today. See my article of symptoms of T1 http://theartisandiabetic.ie/diabetes/ My mother gave my injections and did all the checks that go hand in hand with T1, until I was able to do them myself. Meals and insulin had to be taken at the same time every day. Anything with sugar was completely banned. There was no internet and very few books about diabetes.
My insulin was injected using glass syringes with large steel needles, which were reused. They had to be boiled to sterilise them and they were stored in a container of methylated spirits. I can still remember the smell of methylated spirits when the container was opened.
My dad grew fruit and vegetables and all our meals were cooked at home which was beneficial to me. We didn’t live beside a shop, so the temptation to try sweets wasn’t as great as it could have been. I do remember feeling a bit annoyed that my brother, my only sibling could eat what he liked, whenever he liked! With the improvements in insulin children with T1 can now eat anything they like in moderation as long as they take the correct insulin dose for it.
There were no blood test meters for personal use and a urine test was the only method of checking if there was excess glucose in the body. It wasn’t accurate and it didn’t show if glucose levels were dangerously low as it could only identify ‘no glucose present’ or ‘glucose present’.
Hospital stays for routine things like getting tonsils and appendix removed were much longer and included multiple blood samples being taken and being on a drip for days. Drips and blood drawing syringes and needles weren’t as refined as they are now. Thankfully all that has changed.
I was a bit rebellious in my teens, eating sweets and not giving the correct insulin dose. I ended up very ill in hospital. The thought of the inevitable consequences of not managing it well has kept me on the straight and narrow most of the time since then.
I was lucky to have two healthy babies despite the lack of blood glucose monitoring that is available today. Thankfully neither of them have diabetes. When they were small, the attitude of doctors was that I would get complications and live a much shorter life because of T1. Of course, I hoped that I wouldn’t get complications or die until my children were grown up. So I’m amazed to be still here and have no diabetes complications. I’m lucky that my husband Pat is very supportive and knows almost as much about diabetes as I do. He has only known me with diabetes. When he cooks he automatically tells me if he has added carbohydrates and the quantity, so that I know how much insulin I will need. Sometimes he will suggest I do a blood test if I’m cranky, which is one of the possible symptoms of a low blood glucose, but quite often it’s not as a result of low blood glucose!
The introduction of disposable syringes, pens and needles has made life much easier. When I got my first blood glucose meter in 1984, it took a while to realise that it was life changing. The meter was huge and didn’t have the features of the current meters, but it gave an accurate and current result which was fantastic. After that, I eliminated urine testing unless I was sick and only did urine tests to check if I had ketones, which can have grave consequences if left untreated. I now have a blood glucose meter that can test for ketones, so thankfully urine tests are a thing of the past.
My life has been enhanced with each new development that has come along, from different types of insulin, pens, needles, meters and more recently CGM (continuous glucose monitors) and pumps. Some of those things weren’t handed to me on a plate; I had to find out about them myself, look for them and either buy them or try to get them through our health system. There is a lot of information available and phone apps to check and help keep track of things. I work to keep my awareness of low and high blood glucose, which is hard to maintain the longer you have T1. I am always conscious of not getting a hypo in public. When I was young I was very embarrassed about having diabetes and also felt that if I didn’t keep it well managed at all times, that I had failed.
Food has changed so much particularly in the last ten years, and it can be difficult to know what’s in it that might affect blood glucose.
Different brands of the same food have different amounts of nutrients. Sugar is even added to savoury foods and its changing all the time. Food contents is an area that should now concern non-diabetics as well. Despite all the improvements, managing my diabetes takes up time and occupies a lot of head space. I look forward to new technologies that will reduce this.
Up until recently, there was no awareness of the stress of having diabetes. Thankfully it’s recognised that newly diagnosed diabetics need help to get their head around their diagnosis. At different times, diabetes can be particularly challenging. I used to be critical of myself when I misjudged the amount of insulin I gave and ended up high or low. I eventually accepted that I was doing my best and that many factors affect T1, some I can control and others I can’t. I am always learning about T1; from everyday life, from other people who have diabetes and of course from new technology and health care professionals. The more I knew about T1 the easier it is to manage it.
In May 2018 I moved from multi daily injects to an insulin pump. In July 2018 I got a continuous glucose monitor to go with the pump. I will talk about my experience of both insulin injection, pumps and continuous glucose monitors in this blog.
The level of support varies a lot depending on where you live and how determined you are to get the best diabetes care. While the health service in Ireland needs to be significantly improved, I see notable improvements in the major diabetic clinics. There is still a long way to go and no matter where people live there should be support within a reasonable distance from them.
I hope you will enjoy my site and please contact me with any feedback or queries.
Updated on 4th Oct 2018 to reference the commencement of using an insulin pump.