World Health Day – A personal experience of childhood diabetes

Today, the 7th of April, the World Health Organization (WHO), is marking World Health Day by calling for action on diabetes. There will be a lot of talk about diabetes type 2 and I have previously blogged rather extensively about this type of diabetes (links to the articles are at the bottom of this page).

However, little is said about the other 10% of diabetics who suffer from childhood type 1 diabetes that is caused by the child’s immune system destroying insulin producing cells. I published an article in the Daily Nation newspaper on 30th March relating the story of Carol who suffered from childhood diabetes (type1 diabetes).For the article, I could not go into a lot of detail for lack of space.

This is Carol aged 10, suffering the effects of undiagnosed type 1 diabetes.This blog uses Carol’s own words from the interview she did with me to describe how it was living with diabetes as a child.

10 year old Carol, already suffering the symptoms of diabetes but undiagnosed

10 year old Carol, already suffering the symptoms of diabetes but undiagnosed

I used to drink a lot of water. Initially, I could take up to 5 litres a day but with time my frequency and rate of water intake went extremely high. I started taking about 10 litres a day and after several months, I found myself taking up to 20 litres of water each day or more. In fact, I was given the responsibility of refilling our drinking water pot because I was known for finishing all the water in the fridge and the pot daily. Every family member found it ridiculous. They even gave me a nickname for that.

Frequent passing of urine also came with the water taking. I could go for short calls once in an hour but these increased to once every 30 minutes. The worst times were in school and at night. Each lesson used to take 40 minutes and I would excuse myself in the middle of every lesson to go to the washrooms. It somehow became embarrassing. I also had to carry bottles of water to class everyday. At home, I was also allocated the responsibility of cleaning the toilet since it had become my most frequented room. Sometimes when we would be watching a movie, my eldest brother would predict when I was going to rise to go to the toilet and it would prompt a roar of laughter in the room. I would laugh with them. It wasn’t disturbing me at all. I would console myself that I was the healthiest since I took a lot of water.

The most stressful part was dealing with these two symptoms at night. I had to sleep “alert” to avoid wetting my bed. I could wake up like close to 10 times to visit the washroom and take some water. My nights were hectic. I never looked forward to them. I used to end up very tired in the morning. I couldn’t do any house chore without complaining. Not that I had heavy duties. My main duties were to sweep the compound and maybe help in rinsing dishes. Nobody understood that I was tired. Everyone thought I was just a weak girl. In fact our immediate neighbour gave me a nickname that has lasted to date – “Ayom yom Nyathi winyo” meaning “a weakling like a young one of a bird”.

I was also very irritable. Very petty things would annoy me quite fast. Lastly, I had this constant urge to eat. I always got hungry two hours after a heavy meal. I would even wake up in the middle of the night to eat. I loved bread and at times I would carry a whole loaf of bread to class, keep it in my desk and eat it each time I felt hungry. What wasn’t making sense to my family and I was the fact that I still remained the tiniest even with that level of eating. In fact I grew thin and thinner as days passed by. The worst part would be whenever I visited my relatives during the holidays. I would get scared of eating a lot for fear of judgement and I would really starve. I also experienced blurred vision and headaches once in a while.

I had these symptoms for a very long time (a year or so). The symptoms kept getting worse with time. My mother used to stare at me once in while and ask me how I was feeling. I would insist that I was okay. I found it odd for her to even have a thought of me being sick because of the symptoms that I considered embarrassing. It reached a point when she had to consult with some books to look into the symptoms of kidney or bladder damage. At some point I also thought I had a lose bladder and that was it. She took me for bladder and kidney check up. She even took me for eye check up. Everything was found to be okay.
She had been visiting relatives and was supposed to stay for 2 weeks on the day she was admitted, but her mother came early to collect her. Her mum just wanted her to see a doctor. But Carol was not feeling any worse than normal.

My mother explained my sudden weight loss and constant water intake and urination to the doctors. The doctors confirmed that my skin had become pale but said that they couldn’t diagnose the problem. They therefore referred me to the provincial hospital, which was very far away. We left immediately but since mum wanted to avoid the long queue at the provincial hospital, she took me to a private consultant physician. This particular doctor was a long time family friend and his first reaction on seeing me surprised us. These were his words “ Mary, do you want Carol to die? This child could not have survived to see the next day had you not brought her here”. He had noticed I was extremely dehydrated. He therefore dialed a number and three nurses quickly came with a stretcher and made me lay on it then took me to the provincial hospitals casualty in an ambulance. I felt weird. Here I was, feeling no pain but being taken to casualty.

The next thing I remember was waking up in a ward. I found my mother and the doctor beside me. The doctor immediately asked me to go look at myself in the mirror and when I did, I saw a new me. My skin was no longer pale but normal. The doctor had discovered that I was hyperglycaemic on arrival at the hospital. They had done blood glucose tests and had found them to be 38mml/l (normal one should be between 3.5– 6.5mml/l). That is the moment the doctor considered that I was suffering from diabetes mellitus. They had put me on instant therapy and everything had gone back to normal.

After three days, I was discharged. We went back home and I was still continued on the new diet. After every meal, a nurse from the mission hospital would come to inject me. After sometime, my mum was taught how to do the jab and she took over the task. After two weeks I kept asking why the injections were not coming to a stop. My mother told me that they would come to a stop once I learnt to do it myself. The mission nurse came home again and taught me how to do it. I was excited at first. I thought it was hilarious for to inject myself. I learnt how to do it and did it for around two weeks. All this time I was injecting my thighs. My thighs became sore and I couldn’t take it anymore. The mission hospital nurse started bringing me ice in special frozen containers to put on my thighs for at least one hour each day. She then taught me to inject my stomach whenever my thighs got too sore. My mum on the other hand would inject my upper arm if the injection time found her in the house. It was like a nightmare. I cried secretly day in day out. I remember one time my mother found me crying before a jab and she cried with me for around 30 minutes then asked me to be strong and told me that it will soon be over. That gave me hope. I always waited for the day the injections would come to a halt.

Carol at her 10th birthday, eating cake and drinking soda – exasperating her undiagnosed type 1 diabetes

Carol at her 10th birthday, eating cake and drinking soda – exacerbating her undiagnosed type 1 diabetes

Childhood with diabetes was tough. Very tough. Every routine had to change. I couldn’t eat sweets, biscuits, cakes and chocolates etc. like my friends did. I was in my own world. My closest friends were too young to even understand what was happening to me. I myself didn’t understand it either. I often thought that my mum did not like me and that she just never wanted me to be happy like the rest. I remember we previously used to bake cakes with her on Sunday afternoons. That had to stop. After a year or so, I started hiding biscuits and chocolates under my blanket and I would eat them at night when everyone was asleep. This habit continued and it reached a point when I had to be punished anytime I was spotted with any sweet thing. My brothers became my watchmen. I never liked them because they would report me.

Meal times were hell for me because I had to inject myself after eating. Sometimes I would forget to inject but other times I would lie that I’d injected myself just to do away with one moment of pain in a day. Whenever I would skip an injection, the symptoms I had before would be back. Little did I know that having a high blood glucose level frequently had long term negative effects. I would go for clinics once every month and be educated on the kinds of food I was required to eat. At the clinics, I never for once met a diabetic child. Every other diabetic there was old and most of them weren’t even using insulin. They had type 2 diabetes. It wasn’t easy to talk to them or to share experiences with them.


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