My life with diabetes

*Rosa’s daughter was diagnosed with diabetes when she was only seven months old and has been living with the disease for the past five years.

“It changes your life. From what you cook to which food you buy. Sugar, sweets and anything nice are wrong. Your child’s life is just different than those of a normal child. Even if you don’t want to, you constantly wonder if your child is safe and well. You are on standby 24 hours of the day and must always answer your phone. If the school is not sure of anything, you must prepared to go there. Visits to grandparents or a sleepover is a big no, because the uncertainty, risk and what if’s are just too many. You never sleep through the night because the alarm of the insulin pump goes off twice in the night (if you’re lucky), on a bad night, it could be 2 tot 10 times. The next day you just have to cope with the less sleep.

I am yet to discover the good of the diagnoses. The bad is that your child’s health and life is in your hands – the one day your child is healthy and the next, for no apparent reason, he is sick with high sugar. You did the same as every day, but today it seems to be different. You battle against the high cost of medicine and sugar free and low carb products. You struggle to find medical equipment that are vital for your child’s life. Everyday you need plan B, planning ahead in case of what if? Every year medical aid funds change their plans to accommodate diabetes and every time you have to adapt to ensure you can at least cover the medical expenses. First comes the insulin and pump, then you buy food. Needles upon needles, bruised and battered stomach and buttocks where the sensors and infusion sets are.

What I learned is that, although we are sad about the circumstances which are not easy, we are still thankful for our child. There are parents which are worse of than we are and for that we are thankful and remain on our knees. Diabetes means 24 hours of monitoring, correcting, learn from yesterday, trying to do better today and we still don’t get it right – because we are only human and your child is just a child.”

Koos Muller (70) has been living with type 1 diabetes for the past 42 years.

“It is still difficult with all the tools and knowledge of food to regulate blood glucose levels, it is just a bad disease! I see no good in it apart from the fact that you learn to eat healthy food. I have learned that I’m the only one responsible for my own health. I have never experienced any bad feelings toward God because I have this illness. My philosophy has always been that my glucose levels should rather be too low than too high. Because of this I have gone in many coma’s. Most of the time my wife could help to give me glucose. We have toured a lot in our off road caravan and often with a big group of people. I have gone into three very serious coma’s while we were on these tours and while we were very far from doctors. I’ve been transported via ambulance, but have by the grace of God never suffered any serious consequences. The control of diabetes has improved dramatically with the tandem pump and Dexcom sensor the past two years where you can constantly see what your glucose reading is. Because of this I have never went into a coma again.”

Kenwyn Awaseb (7) was five when he was diagnosed.

“It was a huge shock with a lot of sadness, anxiety and fear for the unknown and how we will handle the road that lied ahead. What about his future, will he be able to lead a normal life and do the things he normally did? We take each day as it comes, because every day is different. Every day is a blessing and we are thankful to God that he has been saved for another day. It gives us courage to keep the faith and stay positive. We (family) are so proud of him, because he doesn’t let his diagnoses to get the better of him. Hy plays soccer, rugby and does athletics. He is very mature for his age. It is difficult for him to just be a child when it comes to friends’ parties and in class. It forces him to be aware of what he eats and how it can influence his life. We’ve learnt that Kenwyn is a very emotional, softspoken boy with a lot of love for everyone around him. He makes a difference in people’s lives with his love, smile and compassion. We have learnt to stay positive and happy and support him in what he does. He can do everything a normal boy can.”

Lola van Rooi (10) was diagnosed in October 2018 and at first it was difficult to adapt, says her mother.

“At first I was unsure if I do things right. She was scared and anxious to be away from me and didn’t want to go to school and went to work with me. With time she understood if she watched her diet and monitored her sugar, everything would be OK. She is such a disciplined child who does everything for herself. She tests and injects herself and makes sure she drinks enough water. The bad thing is that she sometimes get angry because she can’t eat what she used to like sweats, cookies and ice cream. We allow her, but very little. I’ve learnt so much, to be patient and calm. I had a huge support group. Alima, my pillar of strength, helped me a lot. Her and my family’s support helped us through a difficult time. She introduced me to the Diabetes Foundation where I’ve met Penny which also helped me a lot. Today I can master everything and when I struggle, I can contact Alima of Penny for advice.”

Nelien Bouwer (15) was diagnosed a year ago and now has to plan more than before.

“I have to measure my food, pack my insulin and keep it cool and be strong against people who says things that hurt because they don’t understand diabetes. The bad is people who will tell me it is because of my eating habits. It is the only bad thing, I can cope with the injections. The good is that I can eat in class if my sugar is low. It is bad to be sick, but actually I’m OK, I cope. I’ve learnt to overcome my fear of needles, that life will net get the better of me and that God is there for me and my family. I see diabetes as a war that I must win. My hope is for healing, I hope they get a solution in my life time.”

Xander van Wyk (13) will in January been a diabetic for the past nine years.

“The one day you are so tired and take things as they come. I now try to micro manage every little thing. You never have a day off. You always think about it and your head works over time. The good is that he will eventually be able to take care of himself, but it remains a challenge.”

Paula Swart (15) has diabetes for the past seven years.

“Every day is a challenge and there are good and bad days, but you learn. The difficult is to constantly inject yourself when you want to eat. The moment you have a low sugar level you feel desperately ill. The good is that you learn something new and more of your body every day. It teaches one self control and helps you to lead a healther lifestyle. It doesn’t stand in the way of my school activities, I can do any sport. It has taught me to perservere and not give up when things get tough.

Danie de Klerk (18) was diagnosed when he was only nine year old.

“Diabetes has drasticly changed our family’s life, nothing was ever the same. Thorough planning has to be done before we can go anywhere. All the injections and supplies have to be packed. Suddenly my life was in my own hands, I must control everything. My so called friends have disappeared, I can’t do everything with them. Rugby was one of my favourite sports and I can’t do it anymore. Cricket, tennis and swimming are however sports I can cope with. My parents taught me to persist in everything I do. My dad especially played a huge role and I’m thankful for my family. I can perform in all areas, especially academically and I don’t feel sorry for myself. I always try my hardest and don’t use diabetes to manipulate. I hope and believe I will make a success of my life, although diabetes is a challenge. With God’s help and power I can live a full life. I don't care how hard life gets. I'm not losing my faith in God.”

*For more information on support groups for type 1 diabetes patients - children under 12, teenagers and adults, send an e-mail to [email protected]