THE BLOG

Stop Telling Me How to Control My Type 1 Diabetes

17/04/2015 17:20 BST | Updated 17/06/2015 10:59 BST

I've been diabetic for 29 years - and everyday is a battlefield. This morning I woke up and didn't want to test my sugar. I wanted to jump out of bed and get on with my day. I felt tired, groggy and thirsty, a sure sign I had high blood glucose levels. Maybe I didn't take enough insulin with my evening meal? Who knows.

I've spent 29 years coping with Diabetes and it's not easy, so please spare a thought when trying to tell me how to manage my health. No one knows and no one notices the daily struggle I go through. I've learnt to numb your opinions out of my life. I've spent years trying to get my sugars right. I go to gym count my carbohydrates and generally eat healthy, I try my hardest and if I want to have a chocolate or a glass of wine, I will. I'm doing the best I can.

Did you ever stop to consider all the things I have achieved being a Diabetic? I've travelled the world on my own with my condition. I got robbed in South America and all my insulin got stolen. In India I was in a bus accident, my bus plunged off a cliff and I had to fend for myself and leave all my supplies behind. I saw the world and I've done more than others expected.

Yet you still want to tell me how to cook diabetic recipes, that when you see my Facebook posts I always have a drink in my hand.

"You should sprinkle cinnamon over your food, it'll help lower your blood sugar levels," I've been told. I smile, nod but can't help rolling my eyes when no ones looking.

"Oh you have diabetes? You should practice Pranayama it'll clear the sugar in your body!" a Sufi saint in India once told me.

"You have this disease, because your body is at 'dis - ease' with itself." It's no lie, I have been told this.

I went to A&E in London once after suffering a bad reaction to antibiotics a few years ago. The nurse tested my blood sugar levels and it was normal and safe. "Well.... it could be better," she said. How much better would she like them to be if they were in the safe range?

She judged me. The fact I had turned up to A&E vomiting and I was diabetic was enough to give me a discerning look.

At three years old my mother had to hold me down to give me my injections. I learnt quickly how to test my sugars. I do this on average four to five times a day. Until recently I used to inject myself around six times a day. Luckily after a long process I finally got an insulin pump. I only have to inject every three days now.

In my lifetime I have given myself on average 27000 injections. I'm tired and I'm sore. I've lost injection sites because it's too painful to do. Its just so easy for you to pass a comment on a diabetic and say: "oh but they don't take their medicine properly," isn't it? I still have days where I don't get my meds right.

I daydream about eating chocolate and cake and not worrying whether it'll affect my health. You live with a constant inner guilt, a big fat elephant in the room that won't go away - just knowing your actions and decisions of living a 'normal life' might affect you much later on.

Stress, eating habits, lack of sleep all have an effect on blood glucose. Even a simple workout at the gym sends my levels so high because of the adrenaline rushing through my body.

Some days I feel I can't win when even exercising makes my blood glucose levels unstable.

You have to deal with all that life throws at you from death to jobs to paying bills and relationships. All sorts of things that arise out of everyday life, yet you still have to wake up and test those sugars and take those injections.

It's not only about managing sugar levels. The inner turmoil and mental health implications that young diabetics have to deal with can feel too overwhelming to cope with.

Imagine having irreversible eye disease and the only way to stabilise them is to get your sugar levels under control - if it is so easy to do, I would have done it years ago.

I'm constantly cold and sore, I joke I'm falling to pieces, but I do worry. Some nights before I get into bed, I'll use the hairdryer to warm my feet because they are so frozen, I can't seem to get them warm. Ill wake up and go to work - no one will even know. I suffer from this illness and I have to get on with life. I just have to keep going, if i stop Ill never get back up.

So I'll thank you for your advice, I'll smile and be polite - I know you're only trying to help but only I can do this and only I will know what it's really like to suffer from Type 1 Diabetes.