Complicated thoughts – by Helen May

Helen-May-letterbox-150x150My diagnosis with type 1 diabetes came as a huge surprise both  to me and to my parents. As far as I knew, there was no one in my family with diabetes. However, when I asked my mother she said something along the lines of “oh yes, Auntie Mary had diabetes”. This seemed odd to me because I didn’t know I had an Auntie Mary. So I quizzed my mother more and she explained Auntie Mary was something like my grandmother’s brother’s cousin’s wife. Not only was she a distant relative, she was also not a blood relative. So, we couldn’t explain my diabetes diagnoses through genetics.

Not only did no one in our family have diabetes, we knew nothing about it.

Well, my mother knew a little. As I was struggling to come to terms with having a chronic disease that would mean I would have to inject myself every day for the rest of my life, she piped up: “don’t people with diabetes lose their feet?” Our family have a strange sense of humour so we first had to get through the bizarre concept of not remembering where you left your feet before realising my mother meant diabetes resulted in having your feet cut off. I thought she was exaggerating … and in the first few weeks after being diagnosed, I didn’t want to know anything different … but as the recent Diabetes Shoe Shop has illustrated, this really happens to people with diabetes. Neuropathy, which is what leads to loss of toes and feet is a common complication of diabetes. Not even my family’s weird humour could laugh at this.

As I learnt more about diabetes, I learnt about more complications: heart disease, kidney disease, loss of sight, problems with bowels, problems with feet, frozen shoulders, … it’s as if there is no part of my body which is immune to the affects of diabetes.

Hidden complications

One of the biggest complications is hidden … and caused by the complications. It’s the mental burden of having to deal with diabetes every day, every hour, every minute if your life. It’s the worry that you may not get your insulin dose correct and experience a hypo. It’s the guilt that you are costing the NHS £1.5m an hour. It is the fear that you may go blind.

It can affect your body image: some say insulin causes weight gain and you have to consider how to inject or where to attach your insulin pump.

Something as exciting as going on holiday is fraught with apprehension: have I packed enough insulin, test strips, dextrose, …? Will I experience a battle of wills with the security guys who want me to put my pump through the x-ray machine?

Exercise is supposed to be good for you. But when you have diabetes, you are worried about hypos. And eating a bowl of pasta the size of a house to avoid one undoes half the good of your run or cycle. Exercise can become a chore because you have to keep an eye on your BG all the time.

You can’t just enjoy an amazing meal for its taste: you have to count the carbs in it and quiz the waiter/chef/friend about what it contains.

Even when you have a cold, you can’t forget diabetes: not only does illness affect your BG, half the medicines say “not to be taken if you suffer from diabetes”. When you want to curl up in a ball and go to sleep, you have to remember to prick your finger first.

Each year I have blood tests and urine tests to check my kidneys and cholesterol; I have photos taken of my retina to check my eyes and, most years, my feet are tickled to check my mother’s fears will not come to pass. Managing my diabetes will reduce the impact these complications could have.

No blood test or photos will check my mental state and monitoring my BG only helps to a certain extent. So I have to keep an eye on myself. I am usually a “glass-half-full” kind of person: I am glad diabetes has not stopped me doing what I want. But there are times when I am feeling sorry for myself and I wish I didn’t have to worry about diabetes and the complications that it may bring.  I may never be able to take a break from diabetes but I can take a break from some of the things that affect my diabetes and have some “me time” like an hour long bath (I have to top up the water to stop it going cold) with some luxury bubble bath and a good book. It just requires me to think about not thinking about diabetes every now and then to minimise the mental complications of having diabetes.

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