There’s been a lot of talk on our Facebook page about how diabetes affects the whole family. Especially after this guest article about how Diabetes destroyed my relationship with my mother. Today, we have the other side of the story to tell – a mother’s story of parenting a child with diabetes.
The World Cup Soccer was upon us! The atmosphere was abuzz with all the excitement and schools were closing for holidays. My girls were gearing up for a slumber party to celebrate Kirsten’s 16th birthday, great excitement filled the house as friends arrived present laden and ready for a night of storytelling and fun after an evening at the fan walk.
I asked her not to sleep near two girls who had a cold as it was a long holiday and I didn’t want her to get sick. The party came and went and Kirsten got the dreaded cold. She left two days later to go and spend time in Elgin with a few close friends and when she arrived home with bronchitis was put on antibiotics. She was looking very pale and her loss of weight was almost shocking. The doctor seemed concerned at the time but said we could go away and to see him on our return.
Langebaan was like a breath of fresh air compared to the madness in Cape Town and we were looking forward to a couple of days rest with good friends. Kirsten crawled into bed and did not move. We spent days trying to get her to eat to no avail and then she started vomiting: something was wrong and we could all see it. The chemist said there was a bad virus going around and she stuck to fluids for a couple of days: Energade, Powerade and naartjies were her only input.
The scariest day of my life
I could see that there was something drastically wrong on the Sunday night – it was as if she was not registering my presence, her knees had swollen to the size of rugby balls, her movement was staggered and she looked like a skeleton with skin on. I could not sleep worrying about what was happening to my beautiful daughter, was it what I had feared the most?
The morning came and with it came the scariest day of my life. I went down to check on her and she was semi-comatose. We threw everything into the back of the car and got back to the doctor in Cape Town in record time with her passing in and out of consciousness. I ran into the doctor and I said what I had been dreading to say: “I think she has diabetes!” Tests were run and confirmation came through two hours later: Kirsten was a Type 1 diabetic, her HBA1C registered as her being one for at least 3 months prior to diagnosis and she was immediately started on insulin. A new chapter in our lives had begun.
Let me just add here that on my husband’s side of the family diabetes was prevalent and I had always had a fear that my children would one day be diagnosed. I had constantly had them checked throughout their childhood. I thought by now they were all safe from this terrible burden.
Days filled with diabetes
Our days were filled with diabetes: from doctors to specialists to diabetic educators and reps, it was like a neverending story and a huge overload of information. Could the doctors be wrong? What if it was the energy drinks and naartjies we had given her that had sent her sugars over the top? Could she wake up next week and be fine? “No” was the answer to all our questions and we had to resolve ourselves to the fact that all of our lives were forever going to revolve around diabetes.
Kirsten would have to inject herself three times a day at mealtimes and once before bedtime for the rest of her life. Our days of running into the shops turned into hours reading every label and checking the carb count. All temptations were banished from the house, no more fast foods, as we started our new journey.
Unfortunately for Kirsten, things just did not seem to want to come right. She had lost 11 kilograms and had no muscle on her at all, her BMI was only 16. She could only manage to grab a millimeter of skin to inject but her blood sugar levels were fantastic and her endocrinologist was very impressed with her management thereof. Despite her levels being fine, she kept getting recurring lameness in her legs (from walking the one moment to waking up lame the next), as well as severe neck pains and constant chest infections. We had to forbid anyone near her who was even remotely sick.
At the beginning of December we were thrown into shock as she woke up with a mass of glands on either side of her groin, she was scanned and the glands were in excess of 3cm each so it looked like a bunch of grapes. We anxiously waited as they ruled out lymphoma, but praise be to God, it was not so, and she was blasted with antibiotics to reduce the glands.
Complications of diabetes
Our annual holiday to Plett arrived and everyone was so eager and happy to get there, days filled with friends and relaxation and just time to forget about the negatives of the past six months. We enjoyed the first week without a hitch and then once again Kirsten fell ill: she could not eat anything which was most frustrating as diabetics have to eat, and we landed up in the hospital where they could not find anything wrong. Two days later she could not even drink without crying and when her breathing became difficult we once again packed up everything and raced back to the doctors who knew her history in Cape Town.
She can’t recall at all how she got back home, she had lost all the weight we had painfully tried to put onto her and she was admitted for an esophagogastroduodenoscopy showing she had picked up a viral infection which had left her with hundreds of ulcers from the mouth down into her stomach, another complication of diabetes. Once again, loads of meds and a struggle to get her to put on the weight which she desperately needed to gain her strength.
Friends were understanding and eager to learn how to deal with her should her levels drop and were a constant by her side throughout. My frustration was immense, I was so mad at the world, at my Creator, for allowing this to happen to my once super-healthy and fit daughter who had the world at her feet. How could this be happening and why could I not fix it?
I battled every day to put on a smiling face so that she could not see my worry, I would spend hours sitting in her room at the dead of night praying and watching her just to make sure she did not slip into a coma, I had prayer circles going all over the world for my girl and yet no answers were coming. I realized that God had placed my son (who has Aspergers) in our care because he thought that we could deal with it. He had now obviously decided that we did that job well as Kirsten’s sickness had to be dealt with by us too.
I felt that somehow, somewhere, I had to find the inner strength to show Kirsten that she was still the beautiful daughter I always had, except now she was more special as now it meant that we would have to care for her daily, in all walks of her life. I prayed for the strength to guide me to help her in every way that I could: my shoulders are broad and would surely bear the load.
Not a day goes by that I don’t wonder what her levels are, what she is eating or how she is feeling, if she is not with me it takes everything in my being not to reach for the phone to check. The expense of the last years has been immense, but being her constant carer and companion throughout this ordeal has changed me for the better.
Diabetes brought us closer
We are aware of everything that we eat. This is usually the stage in a teenager’s life that they tend to drift away from the parents, but we have become more united. I still allow her freedom but help by providing pre-packed meals knowing that she can enjoy herself without having to worry about where her next meal is coming from. As a family, we have always been close but this disease has brought us closer. We are always on the lookout and we stand together and work through it so that she feels that she is never alone in this lifetime fight with diabetes. We take a small step each day learning and knowing more. Her smile is constant even through all her worries and ill health and this keeps us going.
My daily thoughts revolve around Kirsten and my prayer is for a cure for diabetes to help, not only my daughter, but the millions of people living with diabetes all over the world.
PS: Kirsten is now a successful mountain climber and blogger – follow her adventures on Instagram: cape_town_adventurer
I’d like to introduce a new contributor to Sweet Life: one of my favourite Instagram feeds, Tracy Sanders. Also known as @type1tracy. Tracy has Type 1 diabetes, but that doesn’t stop her from doing anything in life… Check out what she has to say, below, on a solo trip to Italy.
H O N E S T Y ?H O U R: Firstly, I just want to say whatever you want to do, whatever you dream of, or whatever adventure you seek. You can do it. With diabetes. Without diabetes.
Secondly, this isn’t an inspirational “Diabetes can’t stop you from living your dreams” message, let’s be potently honest, it sure as hell can. If you choose to passively sweep through this life ignoring diabetes, your body, it’s messages, type one will create walls and obstacles.
You have to be practical?. You have to take charge?. You have to apply yourself and take responsibility. Take on responsibility WITHOUT resentment. ?Without wishing otherwise, “I wish I didn’t have diabetes, I wish I could be lucky like my friends who don’t have to inject”. It is important to acknowledge these thoughts?, be intensely curious about them and their origins, and let them go.
Taking responsibility does not mean aiming for perfection (it does not exist). It’s about refusing to let numbers define you?, putting effort ??into working FOR your numbers and looking after your mental health too: patience, self-love and kindness, forgiveness, gratitude.
Being alone in Italy, it dawned on me the kind of responsibility that I was carrying with me.? If I had a low, the only person I could rely on was myself.
The thoughts of mid-sleep hypoglycemia developing into seizures did creep into my mind. ?I have never had such before, but this does not mean it’s not possible. It just means I better make 100% sure it doesn’t happen as there will be no one to run into my room to help me. Careful bolusing, dinner well before I sleep, glucose sweets? always on hand & at my bedside. Small practicalities that make all the difference. But I had gelato?, I had pasta?, I skipped dinner, and ate until my tummy was bursting? I had some nasty BGs and a lot of good ones
Yes you can be free, you can explore, you can run that event, you can lower your HBA1C, you can have a beautiful healthy pregnancy. But you first need to have a RAW and HONEST conversation with yourself. How can you make a change, take charge and free yourself of any little bits of a victim mentality that can lurk in the setting of chronic disease?
“I’m looking for some tips or advice on how to communicate better with my diabetic wife. She has Type 1 diabetes and when she goes low it’s sometimes hard for me to know what to do, and hard for her to explain how she’s feeling. Also when she goes high, but low is more of a problem, because it can get dangerous. Any tips?” Luke Jacobs.
I think it’s really great that you are involved in helping your wife cope with her diabetes. The challenges faced by those who care about someone with diabetes are rarely discussed, and very real.
Diabetes is riddled with valleys and waves, otherwise known as lows and highs, and this can be totally frustrating – as well as scary – both for the diabetic and their spouse. Good diabetes management limits the frequency of lows and highs, but there is no guarantee. And there are so many factors that can influence blood sugar that there’s no such thing as a ‘perfect’ diabetic.
So what now?
First of all it’s important for you to be able to identify when your wife is going low. Sometimes, people who have had diabetes for a long time lose the ability to feel their lows – this is where you come in. Learn how to treat a low. Keep some glucose sweets or jelly beans with you so that you can help her if her blood sugar suddenly drops. Don’t be afraid to suggest she checks her blood sugar if you think she’s acting funny.
The trick is to be diplomatic about this. The last thing a wife with diabetes wants is pity – and what woman can be responsible for being snippy when her blood sugar is at 3mmol/L?
– Jeannie Berg, Diabetes Educator
“One of my best friends is a Type 1 diabetic and she often skips taking her insulin to keep her weight down… I know this is going to cause her long-term damage, but I don’t know how to convince her to look after herself better. Any advice?” Sune Terblanche.
One of my favourite quotes is by Seneca: “One of the most beautiful qualities of true friendship is to understand and to be understood.” How lucky your friend is to have you. Teenagers are inclined to focus on one thing and not see the bigger picture. Your friend is most probably also feeling the peer pressure of other girls to be thin.
Teenagers are sometimes just tired of medicine as well. They get frustrated and even feel embarrassed by having diabetes and having to test and take shots and make excuses for not eating cake and drinking cooldrinks. At some stage they just decide to stop using insulin. Stopping insulin makes it easy to lose weight which seems like the ultimate solution.
Without insulin, the body cannot break down sugars from food to use as energy. So it breaks down fat already stored and flushes out the excess sugar through the urine. This leads to weight loss, but it also causes nerve damage, damaged eyesight, kidney damage and osteoporosis, amongst other things.
Being a good friend isn’t always easy, but taking the time to look after a lasting friendship is worth every ounce of effort. The big thing is to be honest. To be a good friend and get her trust, you have to be honest about your feelings and her actions. If you’re honest about how you feel, that will open up direct lines of communication with her and help her talk to you about skipping insulin and how you can help her stop doing this.
You owe it to your friend to start a conversation about it. Being honest is different from being so blunt that you’re hurting your friend. Try not to nag or police her, but use opportunities to point out to her what she is doing to herself. Reinforce the fact that you care about her and ask her how you can help. Remind her that she is brave enough to face the challenge that diabetes has brought into her life. Remind her that everyone is an individual.
– Jeannie Berg, Diabetes Educator
Staying active during pregnancy is the best thing for you – and your baby, Cindy Tilney tells us.
While exercise may not be what you feel like doing when you’re expecting, experts agree that it has a host of benefits – besides being a natural mood-lifter, there’s no denying how good it is for you. “In pregnancy, it’s always better to exercise than not – even with a chronic disease such as diabetes,” says personal trainer Shelley Lewin, who offers specialised pre- and postnatal exercises in Cape Town. “Staying active is not only important for the physical and emotional health of the expecting mother – research has shown that unborn babies thrive if their moms are active. Unless you have a specific medical condition that puts you and your unborn child at high risk during pregnancy, it can only work to your advantage,” she says. “And in people with diabetes, it can help the body to process glucose more effectively.”
What can exercise do for pregnant diabetics?*
- Lower blood sugar
- Improve insulin sensitivity
- Control blood pressure
- Increase energy
- Reduce after-meal blood sugar spikes
- Encourage restful sleep
- Lower gestational weight gain.
According to the American College of Obstetricians and Gynecologists (ACOG).
*Type 1, Type 2 and gestational diabetes
Remember: If you have diabetes, it is essential to get the all-clear from your doctor before starting an exercise programme, particularly if you are pregnant.
“Exercise in any form may require a reduced amount of insulin because exercise increases glucose uptake in the cells,” explains biokineticist Sarah Hall. “The intensity of the exercise you are doing will determine this: lower-intensity exercise can lead to a recommended insulin reduction of roughly 20%, as opposed to a possible 50% with higher intensity exercise.” This is further complicated by insulin needs often doubling during pregnancy, so consulting a doctor is a must.
Healthy exercise tips during pregnancy:
- Check your blood sugar before and after exercise (Type 1 diabetics).
- Always take a ‘quick-fix’ snack, such as a banana, along with you when you exercise, so that you have a sugar source on hand in case of hypoglycaemia (low blood sugar).
- Stay away from forms of exercise that carry a high risk of falling, and avoid lying on your back with the head below the level of the heart, as this can restrict the blood flow to your baby.
- Wear a heart rate monitor during cardiovascular exercise, and keep your heart rate to 140bpm or below. In the past, there was a widely held belief that pregnant women should stay away from all cardiovascular exercise – but modern research has shown that this does not hold true.
The good news? If you’ve been exercising regularly, you can carry on very much as normal, agree Hall and Lewin – provided the activities are not extremely high impact, do not involve fast or sharp changes in direction, or cause surges in blood pressure or adrenalin.
Ideal pregnancy exercise
Both experts recommend 30 minutes of moderate physical activity three times a week, such as walking, swimming, aqua aerobics and light weight lifting under the guidance of a certified ante-natal instructor. The ligaments tend to naturally relax during the second and third trimesters of pregnancy, so be careful not to overstretch during warm-ups – and if you are weight training, use machines rather than free weights to avoid any hyperextension injuries.
“Building up core strength is important in pregnancy,” says Lewin, “but as your tummy grows, you should stay away from certain intense core exercises, such as tummy crunches – instead opt for opposite leg and arm lifts, or practice stability work on a Pilates ball.” Kegel exercises are also important during pregnancy, as they strengthen the pelvic floor muscles.
Be gentle with yourself during pregnancy: stay away from contact sports and aggressive forms of exercise. And be aware of your body and how hard you are pushing yourself during workouts. “The ‘talk test’ is always a good marker of whether you are pushing yourself too hard,” says Lewin. “If you are exercising at the right level, you should be able to talk at the same time – but if you’re struggling to take in breath and unable to hold a conversation, it means you are pushing yourself too hard.”
Find out more about pregnancy exercise at www.homefit.co.za
“Staying active is not only important for the physical and emotional health of the expecting mother – research has shown that unborn babies thrive if their moms are active.”
Ask the expert: Sarah Hall, Biokineticist
Don’t exercise if you have:
- Pregnancy-induced hypertension
- Ruptured membranes
- Placenta praevia
- Vaginal bleeding of any kind
- Incompetent cervix (when the cervix is weak and opens too early)
- Or if you are expecting twins or more
If you experience any of the following during exercise, stop immediately and seek medical help:
- Sudden calf swelling
- Decreased foetal movement
- Chest pains
- Any amniotic leakage
- Excessive overheating
“My son is a Type 1 diabetic, but I don’t want to be overly protective and make him feel he can’t do anything. Do you have any tips for parents of diabetic children, and how to make life normal?’ Sam Shongwe.
The first thing you must realise is that a child with diabetes is still a child. He should not be treated differently than a child who does not have diabetes. Granted, you have more issues to cope with – like good food choices, insulin and testing – but these things shouldn’t stop him from having a normal, happy childhood.
The first thing to do is make sure he is safe at school. Let a responsible person know what his diabetes involves so that they can keep an eye on him. By doing this you won’t have to keep phoning him or the school to make sure he is okay: this will only embarrass him and make him withdraw from friends and fun.
Remember, he can also play sports and take part in physical activities just like any other child: you just need to plan – first talk with his doctor, and then help him with the routine of glucose testing, planned eating, and insulin. Work out a plan that he’s happy and comfortable with.
Encourage your child and allow him to socialise. Let him do parties, sports, sleepovers and camps if he wants to. Discuss a back-up plan with him when he does, but try to let him do his thing.
Most importantly, help your child to become more independent by getting him to take an active part in his diabetes care while he’s still young. Encourage him to solve problems and make choices with you about adjusting insulin doses, for example. Help him create a good lifestyle so that his diabetes doesn’t become too difficult to manage and hijack his life. Self-care is the key to developing any child’s independence and self-esteem: it’s important to get your child involved in self-care as soon as he is able to – with your supervision, of course.
Finally, recognise your limit of control. Accept that you cannot watch over him all the time, stand back and allow him more independence as he becomes more confident and responsible. It’s the same with any child: if they prove their responsibility, they get more independence.
– Jeannie Berg, Diabetes Educator
Do you know what brittle diabetes is? We asked one of our readers, Rencia, to share her story of living with brittle diabetes with us.
I was diagnosed as a juvenile diabetic at the tender age of 5 and a half. This was in 1987, when medicine was not as advanced as it is today.
Upon diagnosis, my parents were told that I would have to take insulin twice a day for the rest of my life and refrain from eating sweets, cakes and all the good things. At that point in my life I couldn’t grasp the enormity of being diabetic. I adhered to the diets and adapted quickly to the injections and glucose testing methods. I would often hear my parents discussing how doctors had advised them that I needed to be told that due to my diabetes I would never conceive children.
The strict control became non-existent when my parents got divorced. I guess as a teenager I didn’t understand the repercussions my teenage years would have on my life.
At the age of 19, I began to notice that my vision was being halved. I went to an ophthalmologist who had me undergo all kinds of tests to determine what the problem was. I was suffering from diabetes retinopathy: when the retina detaches from the back of the eye. If not treated as soon as possible, this leads to permanent blindness. I underwent my first eye operation to reattach the retina in my right eye and had to wait four months with sight only in my left eye. During the 4 months, I lost the vision in my left eye too and for the remainder of those months I had no proper vision, just distorted images in my right eye.
After the operation to my left eye, I became critically ill with hyperglycaemia (high blood glucose levels). I was in a coma for a few days. At this point I was being treated by my current specialist. He changed my insulin and put me on four insulin injections a day, as well as four blood tests a day. I had a new lease on life it seemed and I would take hold of it with both hands. I began to keep away from all forbidden items and all seemed well.
In mid 2007, I began having frequent lows and highs. Maintaining my blood sugar levels became more and more difficult, and it was worrying as I started losing chunks of my memory when I had a hypoglycaemic episode. I saw my specialist who diagnosed my diabetes as brittle diabetes. He explained that brittle diabetes is when you have hyperglycaemia and hypoglycaemia without much warning. There is no treatment for this, except frequent blood sugar checks.
I am often ill with mostly low sugar levels, ranging from 1.6 to 2.2. I’m seldom able to determine when these episodes occur which leads me into very dangerous ground. Brittle diabetes is a sub-type of Type 1 diabetes, a term used to describe particularly hard to control Type 1 diabetes. Those people who have brittle diabetes will experience frequent, extreme swings in blood glucose levels, causing hyperglycaemia or hypoglycaemia.
At the end of 2007, I was experiencing severe tenderness in my left eye and I visited my ophthalmologist who suggested I have my left eye removed as it was shrinking and becoming noticeable that there was no vision in the eye. I had the eye removed and 6 weeks later was fitted with a prosthetic eye.
Against all odds, I conceived my first child in 2010. It was a petrifying experience for me because I was so afraid of something going wrong. On the 4th of October 2010, I gave birth via C-section to my son Tyler. It was a very trying time keeping my levels down. I have successfully had two children – my second pregnancy was easier, though I was hospitalized three times in my first trimester. Once that was over, I maintained constant contact with my specialist and tried my utmost to keep my levels between 4 and 8mmol/l, so that I didn’t have to deal with the effects of my brittle diabetes.
Living with Type 1 diabetes is not as easy as most people thank. It’s a constant challenge and mine is slightly more difficult. However, I do try to rise to each of the challenges to the best of my ability. It’s my great desire to one day receive sponsorship in order to obtain a DAD (diabetic alert dog) – a dog trained to pick up if your blood sugar is high or low by the scent your body omits. Having one of these dogs as a brittle diabetic would be such a great help. It could be a lifesaver.
I urge parents, teenagers and even older individuals to take extra care of their diabetes from day one of diagnosis in order to prevent the challenges I face daily. See your doctors regularly and you could lead a fairly normal life. Diabetes is a life-altering illness, but with the correct care from day one you can lead a fairly normal life.
– Rencia Gabriel-Phillip
Would you like to share your story of living with diabetes with the Sweet Life community? Email us – we’d love to hear from you.
“My son has just been diagnosed with Type 1 diabetes and we all feel like our world has been turned upside down. But he’s really struggling to talk to us (and his extended family) about his diagnosis. Any tips on how to begin?” Razan Naransamy
When a child is diagnosed with diabetes, both parent and child feel different emotions. In the beginning, parents are inclined to spend time worrying about the physical effects and the day to day management of a condition they don’t yet know anything about. The child goes through different feelings, like sadness and hopelessness, even anger and frustration.
It might help to find someone your son will confide in – even if it’s just to find out why he doesn’t want to talk about his diagnosis. It could be a diabetes nurse he trusts or a psychologist or even a family member or friend. Don’t feel bad about getting help. There are many reasons he might not want to share: he might feel isolated, depressed, afraid or even angry at you. Because you are the one in charge of the tests and shots and the policeman of what he eats or does, it might be easier to blame you. He could even be feeling embarrassed because of the sudden overload of attention.
Helping your child involves acknowledging his feelings and listening to what he says. This communication does not always have to be verbal. Writing or drawing or even making music can get your child to share his feelings.
Encourage him to actively participate in his health care management. Help him to be independent. Once he starts feeling more confident and independent, he will be more likely to share his feelings of living with diabetes. Encourage him to have fun with friends and if he starts going on outings and camps with friends and other children with diabetes he will learn from them that it is okay to talk about it.
- Tell your son that he did nothing to deserve diabetes – it just happens. If he feels that the condition is troublesome for you or your family, reassure him that there’s no reason to feel guilty.
- Remember that children are likely to copy the way that their parents cope with something. Also remember that expecting a child to deal with things quickly and practically isn’t helpful to you or him. You need to set the example.
- Build a support network that you and your family can fall back on. Be informed parents.
- Make the most out of every day.
You and your son are on a lifelong journey with diabetes.
A good journey requires lots of planning, flexibility, curiosity, frequent course corrections, and an occasional attitude adjustment.
Make it a good one.
– Jeannie Berg, Diabetes Educator