Type 1 diabetic
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 got this amazing email from one of our community members last week and had to share it. Would you like to share your story with the Sweet Life community? Email me – we’d love to hear it.
What an absolute treat to read your magazine and continually refer to it.
I have been Type 1 diabetic for 14 years. As much of a roller coaster ride as it has been, I would not swop being diabetic for anything in the world.
The people you meet along this journey, the knowledge you gain about how your body functions and responds, the prior knowledge you get from high glucose readings before you get ill and a complete understanding of the people I meet who possibly battle with elevated glucose levels or hypoglycemia.
Being Type 1 diabetic makes you aware on every level – spirit, body, mind, soul, feelings, thoughts, allows for wise choices (although if not wise then the consequences that accompany these – you have actually just got to smile, knowing that this is within your control), tolerant and respectful of others.
It is without a doubt, a gift.
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.
“I would like to know to help and support a friend who has diabetes. My friend is a Type 1 diabetic and I’m not always sure how to help him in the tough times.” Markus Vorster
You have not said how old your friend is, but much of the basics stay the same. Here are 7 ways to support your friend with diabetes.
- First of all, treat your friend like anyone else. It is important for him to realise that his diabetes makes absolutely no difference to your friendship. If your friend is having trouble accepting his condition, be supportive and understanding.
- Try not to ‘mother’ him, but do encourage him to look after himself.
- Understand that people with diabetes are more prone to mood swings and depression than those who do not have diabetes.
- Learn to be able to recognise when his blood sugar goes too low, and know what to do in case he needs help.
- Remember, really tough times for diabetics are when they are sick. Blood glucose levels bounce up and down and this makes them feel more ill.
- Give him all your support by understanding his condition to the best of your ability.
- Get the facts and go beyond the myths and misinformation by talking to your friend, your doctor, or relatives who have diabetes.
As a friend, your understanding and acceptance are very important. The more you understand his circumstances, the less alone your friend is likely to feel.
Empathise, but never sympathise.
– Jeannie Berg, Diabetes Educator
Teens with Type 1
Teenagers with Type 1 diabetes feel especially isolated and alone. It’s bad enough dealing with body changes and hormonal issues, but add to that testing blood sugar, keeping tabs on what you eat and injecting yourself, as well as mood swings, and you can see why teens with Type 1 have a lot to deal with. Understanding what goes into diabetes means you can help your teen feel less self-conscious and different from everyone else.