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  Back to Parent' Voices Barbara and Danielle

photo I am Barbara, a 38-year-old self-employed book-keeper married to Pete who is an Engineering Consultant. We have a daughter named Danielle who is seven years old and everything we live for. My story is about our struggle as a family living with diabetes.

My brother and sister, myself, my daughter, my Auntie and my second cousin are all insulin-dependant diabetics and my Nana was too.

My earliest memories of diabetes was staying at my Nana's house and watching her inject herself each morning with a glass and stainless steel syringe which she had to boil to sterilize. I used to think she was really brave and was glad that I didn't have to do such a thing. Once the injection was done, we got on with our day and it was forgotten about until the next morning when I was mesmerized by her bravery. I do remember little bits about Nana not being allowed to eat sweets but it didn't bother me too much because she seemed quite happy anyway.

When I was 7 years old, my baby sister became very ill and I remember her lying on the settee. This period seemed to last a long time and she became very thin. I can still see the image of her with no fat on her body and I remember her ribs and hips showing a lot. I was told one day that my sister had gone into a coma and my mum had to visit her daily to talk to her. I used to visit her at hospital but I was told that she didn't really remember us and that she thought the nurses and doctors were her guardians and the hospital was where she lived.

The next thing I remember was her coming home and the neighbours being really glad to see her. She had lots of toys and her face and body were fatter. She sat very quiet as we all sat and looked back at her. I can remember wishing that I was ill so that I could have as many presents as she had.

My sister went to the same school as me but I was very often called to help because she would be lying in a ball and would not move for anybody. She would be clenching her fists and have a lot of strength and she would be crying a lot. My mum was called to the school a lot to help her.

My mum had tablets to test my sister's urine for sugar. They were quite dangerous tablets because they were made from caustic soda. There was a test tube and dropper. I used to watch my mum putting 5 drops of urine in the test tube and 10 drops of water. This was followed by one of the 'dangerous' tablets and then the effervescing started. The test tube bubbled away and got very hot and then we had to wait to see what colour the liquid changed to. If it was blue, there was no sugar in her urine but if it was orange it meant there was a lot of sugar. My siblings and I enjoyed watching this event take place and guess what colour it was going to turn.

I can remember my mum calling the doctor because my younger brother had tried to eat one of the urine testing tablets and it had effervesced in his mouth and burnt the skin off his tongue and roof of his mouth!

I was to discover that my sister's diagnosis took a long time because children rarely got the disease. The hospital she was taken to had not seen a diabetic child before and did not know how to treat her. She was eventually put on the same amount and type of insulin as my Nana was on and it was a high dose. Within weeks she was twice the weight she had gone in as and would have been considered as overweight for her age.

One day when I was 10 years old, still enjoying watching my mum carry out the urine test (with the tablet that was very dangerous) and with a big bag of acid drop sweets in my grip, my mum said, "Come on Barbara - let's test you". I was pleased to offer my own urine to watch it turn blue for a change to the orange that we always got with my sister. My mum said "It's orange" and I said "No it's not". There was much disagreement on my part and I told my mum that she was tricking me and that she had put some of my sister's urine in my test tube. She told me to put the sweets down.

I went to hospital to have a glucose tolerance test. They gave me sugary drinks and tested my blood, etc to see what the effect was and they confirmed that I was diabetic too. I was immediately put on insulin injections and was taught how to inject myself before I came home.

From that moment on, I didn't want anyone to know I was diabetic and tried to hide it as much as I could. I didn't want to be different from anyone else. I found that if I said I was diabetic, I was asked lots of questions and people would worry about whether I was allowed to eat this or that, or not. That made me different, so I decided not to tell anyone.

I had an illness called ketoacidosis when I was 16 and was in Intensive Care but I did not realize how serious this was until I came home. It was a slow build-up of high blood sugar which led to sickness and dehydration. (Enough said on this matter.)

I started going out with my husband when I was nearly 18 and we soon rented a house together. It was 6 months before he knew I was diabetic. I would hide it from him in case he thought I was too risky to be with. He was my first boyfriend and was really easy-going so I wasn't going to risk losing him. I now know that I was foolish because I could have been seriously ill and he would not have known what to do. He asked me one day what I was doing and I explained it. He was really shocked because he had never come across diabetes before. He said that he thought I was injecting myself just 'now and then' but not every day. After checking with him that he would stay with me if I told him the truth, I went on to explain as much as I could. He has since saved my life many times.

I was married at 24 and then the miscarriages started. Each time it was because the baby had died in the womb and I had it taken away. They never said it was through diabetes. By the time I was 29 I decided that I needed some help if I was going to have a family of my own. All the tests I had proved that there were no known reasons (apart from diabetes) for my infertility. I went on to receive a fertility drug and had my daughter when I was 31.

I had my little girl in May 1994 by caesarean section. I must add that this was through choice and not through complications with diabetes. From the minute she was born, my little girl was my 'everything'. I treasured this little miracle and 'wrapped her in cotton wool'. Last year she wasn't feeling herself and I took her for a check-up. The doctor did a routine urine test and said that some glucose was showing up and that he would write to the hospital to get it checked out. However, because I had all the equipment at home, I decided to do a blood test myself that night. It was 24. Normal levels are between 4 and 7 and sometimes a bit higher is acceptable, but 24 meant that she was diabetic before they even told me. I sat down, covered my face and cried out loud while she was asking me what was wrong. I told her that I felt sorry for Daddy (who had just had a major operation and was in recovery). I phoned the doctor the next morning and told him that I could not wait any longer for an appointment to come through because she was showing 24 on the blood glucose meter. He agreed with me and we went straight to the hospital for diagnosis.

It was quite traumatic on the ward because the needle in the back of the hand is very painful and then we had to wait and see what the result was. She had a water infection and the doctor told us that 'the water infection could be what is causing the sugar to show in the urine' or the 'sugar in the urine was what was causing the water infection'. I don't need to tell you which one I was hoping for, but unfortunately the result came back that she was definitely diabetic.

There was a family opposite us in the ward whose son had been diagnosed diabetic too, but they seemed to be taking it very well. I can't say exactly how they were feeling but I know that they must have wondered why I was crying all the time. Every time somebody came to talk to me about Danielle's condition, I cried. I soon realized that the family opposite had been given a reason for their son's illness and had to learn how to deal with it but I knew what my little girl was going to have to go through and that was why I was crying uncontrollably.

I know what I went through, but now I know that things are easier. For example, the glass and stainless steel syringes have changed to disposable and lightweight (there is no need to boil to sterilize) and the needles have become smaller. There is much more help available too. My daughter has just been given a pen injection with a 5mm needle (mine was 12.7mm) and she is happy to do her own injections now because they don't hurt with such a small needle.

My husband and I never go out unless we are with Danielle because we feel we need to keep a close eye on her all the time. We have not been out together for a long while but we are a very close, strong family and that will not affect our relationship.

My daughter asked for her friend to come and play last Saturday. I made the arrangements but Danielle had 2 hypoglycaemic attacks on the Saturday morning. I went to pick up Danielle's friend and explained what had happened. She was exhausted after her ordeal that morning that she let her friend play with her toys while she had a sleep.

My daughter goes swimming as part of her school lessons. I go to school to test her blood before I let her go on the coach and I worry about her the whole time. This is normal for me though, because I worry about her every day she is at school and I am not there. I think I should work at the school so that I know she is ok.

I am one of 6 children and we have always been very close. One of my brothers was killed in a car accident 5 years ago and none of us thought we would ever get over it. He was the 'life and soul' of us and made us laugh so much. How were we ever going to laugh again without him? My brother Stuart who was 21 had to identify him and his belongings as well as explaining things to us. I flew him home but he was traumatized to say the least. It wasn't long before he was diagnosed diabetic. He went onto insulin straight away. It used to be said that 'shock' can bring on diabetes so this is what our family thought had done it.

There are a lot of different things said about what causes diabetes and I can say for sure that with our family it is hereditary. As I mentioned earlier, my Nana was diabetic but it does not stop there either. My Nana's niece was born with diabetes, my Nana's eldest daughter has diabetes and so has her granddaughter.

Diabetics today probably know the 'exchanges' system when working out what food they are eating but I remember it being called red and black 'lines'. You were told you could eat as many red lines as you wanted without it affecting your blood sugar. Red lines consisted of salad items, eggs, meat and cheese and black lines were potatoes, pasta, fruit, bread and everything else with carbohydrate. The red and black lines were replaced with grams. For example, 1 black line was equal to 10 grams of carbohydrate and red lines were not replaced with anything. The 10 grams of carbohydrate were replaced with 1 exchange. I remember my mum had to weigh and measure my sister's meals to get the right amount for the amount of insulin she was taking. I also remember being told that I should eat 21 black lines a day and then this changed to 210 grams of carbohydrate and then 21 exchanges.

Things have moved on so much and now the food is not measured in this way. The doctors now say that you should look at your plate and ensure that there is pasta or potatoes in a good enough quantity. This is much easier than weighing everything out each meal (especially when you have 6 children like my mum had).

I am currently looking at purchasing a Gluco-watch for Danielle so that her teachers can read it and I will feel more at ease. I believe I can set the alarm to go off if she drops below a certain level and this will also help me sleep knowing that the alarm will wake me up instead of getting up periodically myself. I have asked Danielle if she would like to try the insulin pump but she is a bit scared of it. She wants me to be the guinea pig and I quite agree.

I think the standard of care is much better today. The diabetic clinics are much more understanding now than when I was a child. I used to get so embarrassed when they shouted, "Have you brought your urine sample?" There was never any young ones in the waiting room either; this made me feel like I was the only child apart from my sister to have the disease!

Holidays don't seem to be 'holidays' any more. It was bad enough when there was just me to think about but now that my child has diabetes too, it is more than twice as hard because I am responsible for her as well. I was recently refused holiday insurance cover for Danielle because she was newly diagnosed.

I live each day with hope that there is a cure around the corner and I do believe that this could be imminent.

Barbara received e-mail at Babzwatson [@] aol.com. You can read more about Barbara and diabetes, including the story of her daughter getting the pump, on her web site at http://hometown.aol.co.uk/babzwatson/myhomepage/newsletter.html.

Published May 11, 2002
Updated August 14, 2003



                 
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