type 1 diabetes
Information and questions about Type 1 diabetes.
Are you a runner? Do you have Type 1 diabetes? Share your advice, tips and lessons learned below…
I have been a Type 1 diabetic since 1984. I have been running fairly regularly, but recently decided I need a new challenge. I have done half marathons with no significant problems and managed my sugar levels throughout without gu or syrups. I used regular sips of Coke and mini energy bars.
My new challenge is a full marathon. I need advice on carbs or gu while running, without rocking my blood sugars too much. I am not on a pump, which I suppose makes it slightly more challenging.
Anyone who has done this before and can offer advice?
Psst! Have a question for the South African diabetes community? Email us and we’ll get it answered.
Read more about trail running with diabetes and a few fun trail runs in South Africa for diabetics to try.
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.
For radio presenter and TV actor Kini Shandu, Type 2 diabetes gave him new meaning. Here’s what he has to say about his condition.
Kini Shandu is a radio presenter on one of KZN’s biggest radio stations, Gagasi FM, a TV personality on SABC’s biggest telenovela, uZalo, and the founder of Inqaba Media. He’s also a father of two and a Type 2 diabetic.
When were you diagnosed?
I was diagnosed with Type 2 diabetes in 2010 – six years ago now.
How did you cope with the diagnosis?
It wasn’t easy coming to terms with the new lifestyle, especially because I felt I was too young to be diabetic.
Has it become any easier with time?
Yeah, it has. It became easier once I came to accept that it was my new reality. Having family and friends who support me all the way makes a great difference.
What’s the hardest part about being diabetic for you?
The pressure of making sure I don’t default on my medication: having to keep my medication kit with me, even when I’m travelling. We are all human and we can forget, but this is a challenge I just have to face. Reminders on my cellphone help me a lot!
How do you balance a busy life with eating right and exercise?
I jog every morning and I try by all means to eat as clean as I can. There are times when I miss junk food, but knowing the damage it could do is enough to switch my brain straight to its senses.
You’re a radio presenter on Gagasi FM, do you talk about diabetes at all?
Yes, I do talk about it a lot. I’m fortunate to have Gagasi FM listeners who follow me closely: they know I’m diabetic and are very supportive. I also make sure I spread the word on every platform I get.
Could you tell us about your TV acting?
I play the character of Shaun, a lawyer, on the SABC1 telenovela, Uzalo, weekdays at 8:30pm. The character is the complete opposite of me, but I’m loving it and I’d like to do more TV gigs in the near future.
What advice would you offer to diabetics who are struggling?
Accept the situation and take it one step at a time. Diabetes is a silent killer, so take a stand and fight it. Surround yourself with people who love and support you.
What makes your life sweet?
The fact that I’m diabetic! Joking. I love my life, I live an awesome life, I live with no regret. I thank God for each and every day in my life: diabetes gave me a new meaning to life.
Hypoglycemic episodes (hypos) can be a scary experience for all involved: here’s what you need to know to deal with one.
- A hypo is a sudden low blood sugar episode.
- The optimal blood glucose range is 4 to 7mmol/l. With a hypo, blood glucose levels are usually lower than 3mmol/l.
- Initial symptoms are nervousness, sweating, intense hunger, trembling, weakness, palpitations, or trouble speaking (depending on the person).
- The best thing to treat a hypo is fast-acting carbohydrates: 15-20g of sugary carb (a few sweets, 2 tablespoons of raisins, a tablespoon of honey or half a cup of fruit juice).
- The key is to catch low blood sugar early – as soon as it starts dropping – and treat it with a small dose of something sweet.
- If blood glucose drops too low it can get to the stage where the brain is not getting enough glucose.
- Symptoms of this are confusion, drowsiness, changes in behaviour, seizure and eventually coma.
- In case of a severe hypo, a glucagon emergency kit may be necessary. This once-off injection instantly raises the blood sugar, and is particularly useful when the person with diabetes is unconscious or unable to swallow.
- Notify all those close to you what to do in an emergency and how to use a glucagon injection.
- Test often to keep your levels as well controlled as possible.
Meet Shane Casserley: a Type 1 diabetic who is also juggling coeliac disease and ADD… while living his best life.
When were you diagnosed with Type 1 diabetes?
When I was 8 years old years. I am now 22.
Was your diagnosis a shock?
A huge shock. I was completely freaked out. I was hospitalised straight away and had to stay in hospital to learn to give my own injections and I was visited by a dietician to adjust my diet. After the initial shock wore off I went into depression.
When were you diagnosed with coeliac disease and ADD?
In 2011, when I was 16 years old.
How do they affect your diabetes?
They don’t affect my diabetes in any way but it was another huge diet adjustment because when you have coeliac disease you are not allowed to eat anything containing wheat or gluten. The ADD also does not affect the diabetes directly but indirectly it is a lot more difficult to remember to check your sugar regularly and give insulin when you eat.
How did you become interested in fitness?
When I was going through a rough time, a friend offered to take me with him to gym. It made me feel so good that I have been hooked ever since.
Why do you want to be a personal trainer?
Going to gym and changing my diet greatly improved my health and self image, and gave me the confidence that I lacked. I would like to do the same for other people, especially for diabetics who are battling.
How do you think regular exercise helps people with diabetes?
It has a big impact on stabilising sugar and thereby lessening the risk of future complications. At the same time, it increases your endorphins, which makes a person feel good psychologically and decreases depression.
What advice do you have for other diabetics who are struggling?
The most important thing is to accept that you have it and you can’t change it and rather learn to adapt to it. Once you have accepted it and you start eating right, exercising regularly and keeping a good check on your sugar readings, then you can lead a normal life. It is always good to get support from other diabetics.
Sweet Life editor and Type 1 diabetic Bridget McNulty shares her pregnancy story – and what she wishes she’d known before she fell pregnant.
How long have you been diabetic?
I was diagnosed in October 2007… It was a very dramatic diagnosis: I was admitted to ICU for five days and was apparently only three days away from a diabetic coma because my blood sugar was so high.
Did you have to prepare to fall pregnant?
I told my endocrinologist ahead of time that my husband Mark and I were thinking of having a baby, and he gave me the go-ahead because my blood sugar was already well-controlled: my HbA1c results were 7.0 and below for the year before I fell pregnant. I also mentally prepared for the pregnancy, because I knew it would require a lot of discipline and that my diabetes would become even more of a full-time job than it already was!
How did having diabetes affect your pregnancy?
I had to be in extremely tight control throughout – HbA1c results of 6 and below (which I didn’t think was possible before I fell pregnant!) and blood glucose results of 7.8mmol/l or below an hour after eating… Where possible. I also had to test even more frequently than usual (up to 8 times a day). I had HbA1c tests every month and saw my endocrinologist every month, and I couldn’t indulge in pregnancy cravings like eating a whole tub of ice-cream! I had to be very strict with my diet. But it’s amazing how much easier it is to do when your motivation is the health of your baby.
How was the birth experience?
As smooth as I could have hoped for. I chose to have an elective C-section: it was either that or an induction, as all babies born to diabetic moms have to be born at 38 weeks. In the week before the birth my blood pressure started creeping up, and I was retaining a lot of water. Because diabetics are at greater risk of pre-eclampsia, my gynecologist decided to bring the birth forward two days, from the Monday to the Saturday. It was hugely exciting, and hugely nerve-wracking. Arthur, my baby boy, was born totally healthy and weighed in at a (very) healthy 4.5kg. We fell in love with him instantly.
What was it like having a young baby, with diabetes?
It was a real challenge in the early days. Breastfeeding plays havoc with blood sugar control, and causes really persistent lows. Sleep deprivation is tough to deal with, and it’s so overwhelming having a new baby and trying to learn how to be a parent that my diabetes kind of took a back seat for a while. I remembered to inject and test, but that was about it.
What do you think the biggest challenge of a diabetic pregnancy is?
Although 9 months doesn’t seem like that long at first, it feels like a really long time to be non-stop super-disciplined.
What advice would you offer to diabetics who are struggling?
You will feel so much better if you get your blood sugar under control. It is so worth it in terms of health and energy and general happiness to do what it takes to get good control. I know how hard it can be, but the reward is a healthy, happy life with diabetes – and that’s about as good as it gets.
What makes your life sweet?
My two sweet children, my wonderful husband, my awesome family and friends and the sweet life I’m living!
It’s the highest mountain in Africa, but that didn’t stop Neil Rae – a Type 1 diabetic for 50 years – from wanting to climb it. We chat to Neil, 63, about his preparation, the climb itself, and life with diabetes.
How long have you been diabetic?
I was diagnosed on the 13th December 1964: over 50 years. I’ve seen a lot of changes for diabetics in my time – there’s a lot more we can eat, the technology to monitor blood sugar levels is a lot more advanced and the insulin pen sets are much more convenient. We’ve come a long way since the gas cylinder with a tin cup that I used to sterilise my glass syringes when I was at university!
What made you decide to climb Kilimanjaro?
I grew up in Lesotho and I’ve always had a love for mountains. I don’t know how many decades ago, I said to myself I wanted to set a goal for my diabetes: to climb Kilimanjaro when I’d lived with it for 50 years. About 18 months ago I contacted Novo Nordisk, the people who manufacture my insulin, to ask if they’d like to partner with me. They were very excited to join the challenge. As you can see it’s been a long-term goal of mine…
What did you do to prepare?
I’ve always been a relatively fit person, and I do a lot of walking with my wife Shaye, in and around the streets of Johannesburg and in the Drakensberg. I was walking between 30 and 40km a week and over weekends doing long walks in Westcliff – they have a flight of 222 stairs built into the rock face, and with a heavy rucksack on your back it’s good training! I did the climb with my doctor, Dr Bruce Ilsely and David Broomfield from Novo Nordisk so as a team we were well prepared.
How did you know what to eat and drink while climbing, and how to balance your blood sugar?
Balancing blood sugar was obviously going to be a challenge – spending between 7 and 8 hours a day climbing up and up and up all the time. It was tricky to balance that amount of exercise with the food supplied by the people who organised the walk – we didn’t take any food with us. Normally my sugar is very well controlled, so the plan was to do very regular checks of my blood sugar levels, see what we were going to be given to eat and then decide how much insulin to take. It turned out that I didn’t eat very much – I became nauseous quite early on, once we were over 3500m.
What was the hardest part of the climb?
The hardest part for me were the ascents and descents because you had to climb up mountains and then down into valleys, and there was a lot of very rocky pathways – walking from rock to rock. Some days we went up and down two or three times in a day. We left Moshi on the Monday and we summited on the Thursday night/Friday morning. Unfortunately I wasn’t able to make the summit – I got up to about 5000m and my altitude sickness was so bad that Dr Bruce said to me, “If you carry on, you’re going to die”. Once I got back down to the base camp at 4600m, then I was fine: it wasn’t diabetes related at all.
What advice would you offer to diabetics who are struggling?
In my opinion, every diabetic who’s struggling has got to develop a lifestyle routine: get up in the morning, check your blood sugar, decide how much insulin you need and what you’re going to eat for the day. You have to have a definite lifestyle routine, and stick to it every day. Discipline is so important to a diabetic. If you don’t have the routine and don’t have the discipline, you’re not going to live with it for 50 years!
What makes your life sweet?
I’m very fortunate: I’m married to a lovely lady and I have two daughters and four grandchildren now. My family, my life and everything in it makes my life very sweet.
Type 1 diabetes used to be diagnosed in the young; Type 2, mostly in older people. But the picture is changing. Why? And what can we do about it? Carine Visagie asks the experts.
Since the 1980s, diabetes has rapidly increased – so much so that the global prevalence has nearly doubled since 1980, rising from 4.7% to 8.5% in adults. Over the past decade, Type 2 diabetes has become a massive problem in low- and middle-income countries and, for the first time in history, it’s a significant problem among the world’s children. What’s more, Type 1 diabetes is also on the increase.
It’s estimated that about 1.396 million of South Africans with diabetes remain undiagnosed, which makes it hard to judge the scale of the problem here. “But diabetes certainly is on the increase here, too,” says Johannesburg-based paediatric endocrinologist Prof. David Segal.
While the worldwide increase in Type 2 diabetes can be explained by unhealthy, modern lifestyles, rapid urbanisation (linked to inactivity and unhealthy eating patterns), a wider spread of the genes linked to the disease, and an ageing population, the reason for the increase in Type 1 diabetes is less clear.
To complicate matters, an increasing number of adults are presenting with latent autoimmune diabetes (LADA) – a form of Type 1 diabetes in which the progression of the disease is slow. As such, many adults with LADA are misdiagnosed as having Type 2 diabetes.
Type 1 diabetes in adults and the very young
At the start of the 20th century, diabetes was rare in children. By the end of the century, it increased substantially in many parts of the world and, right now, many countries are documenting higher numbers of Type 1 diabetes than ever before. Plus, the profile of patients is changing.
Across the world, this autoimmune disorder now often strikes at a younger age. And while similar research hasn’t been done locally, research shows that 50% of people newly diagnosed with Type 1 diabetes in the United Kingdom are over 30. This turns the long-held belief that Type 1 diabetes develops only in childhood on its head.
It’s long been known that both environmental and genetic factors contribute to Type 1 diabetes, but the exact triggers remain unknown. One of the theories, according to Johannesburg-based endocrinologist Dr Zaheer Bayat, is the hygiene hypothesis, which suggests that exposure to a variety of pathogens during early childhood might protect against Type 1 diabetes. A second theory suggests that certain viruses may initiate the autoimmune process involved. Another is that vitamin D deficiency plays a role. And a link between Type 1 diabetes and early exposure to cow’s milk is being explored.
According to Segal, being overweight or following the lifestyle of an obese person (being inactive and following an unhealthy diet) may also be a trigger. The “accelerator hypothesis” argues that Type 1 and Type 2 diabetes are in fact the same condition, distinguished only by the rate at which the beta cells in the pancreas are destroyed, and the triggers (or “accelerators”) responsible.
Type 2 diabetes still on the increase
In South Africa, Type 2 diabetes remains a massive health problem that accounts for more than 90% of diabetes cases. This condition, in which the pancreas either doesn’t produce enough insulin or the body doesn’t use it effectively, still predominantly occurs in adults. “But, for the first time, we’re also seeing young adults and adolescents with Type 2 diabetes,” says Bayat.
Ethnicity, family history and gestational diabetes combine with increased age, overweight/obesity and smoking to increase a person’s risk. In this country, the high incidence of Type 2 diabetes is also closely linked to the rapid cultural and social changes we’ve experienced over the last 20 to 30 years. With them came physical inactivity and unhealthy eating – both important risk factors.
According to Fiona Prins, diabetes specialist nurse practitioner, researchers are also currently investigating how, genetically, some of us store fat differently – a factor that could play a role in diabetes risk and management. “Some people may have ‘thrifty genes’, which would allow them to cope better on meals that are eight hours apart,” she says. “But this goes against all our messaging of eating three meals a day (or six, in the case of diabetics).”
Part of the problem, adds Segal, is that many of us don’t quite know what obesity is – we think we’re just overweight when, in fact, we’re obese. His advice is clear: “You have to lose weight to halt the progression to diabetes. It’s the only way.”
Jenny Russell, support group expert, adds: “Go and see a dietician who specialises in this field. They can do a thorough history and advise on an eating plan that suits you. Then simply get moving – every bit of exercise counts.”
If you’re diabetic, you probably know all about testing your blood sugar… But are you doing it the right way? Here are some top tips.
- The goal is always to keep your blood sugar in a healthy range: not too high and not too low.
- Checking your blood sugar often makes it easier to understand the relationship between blood sugar levels and exercise, food, medication and things like travel, stress and illness.
- Blood sugar readings also give your doctor, diabetes nurse educator or clinic sister information to help you adjust medication and food, if your numbers are often too high or too low.
- Modern blood sugar meters only take 5 seconds and need just a tiny drop of blood.
- Pricking the tip of the finger is the easiest place to get the drop of blood.
- Before you test, it’s important to wash your hands with soap and water and dry them properly.
- Type 1 diabetics should test before every meal, to decide how much insulin to take.
- Before a meal, blood sugar readings should be 4 to 7mmol/l*.
- Two hours after a meal, blood sugar readings should be 5 to 10 mmol/l*.
- Keeping a blood sugar log is a very helpful tool for all diabetics. Write down your blood sugar test results, along with the date, time and what food you ate. This can make it easier to see if there are patterns in your blood sugar readings.
Of all the sports a diabetic could choose, ice skating – with its precision, edge of danger and need to be feeling 100% every time you take to the ice – isn’t the most obvious. But that didn’t stop KZN champ Rachel Lombard from competing.
Who did you skate for?
I was part of the Toti Seals Synchro Team, and we represented KwaZulu/Natal twice a year in the inter-provincial competitions, as well as the KZN championships.
How long have you been diabetic?
I was diagnosed about 10 years ago, when I was 7 years old. It was pretty traumatic, I was scared that I was dying because I was misdiagnosed – they thought it was cancer. It was a huge shock for my mom, but I just remember feeling relieved it was only diabetes and it wasn’t anything worse.
Is it difficult to compete when you have to worry about blood sugar levels on top of everything else?
I have an insulin pump, so that helps, but I still have to be very careful. I make sure my blood sugar is fine an hour or two before we’re due to go on the ice, because my pump is under my tights and my costume and it’s difficult to get to if I need to adjust my levels. I also test just before I go on the ice, because the adrenalin can do funny things to my blood sugar. And I make sure I always have fast-acting sugar on hand in case I go low.
What do you love about ice skating?
I love it mainly because it’s different, and because there’s a real community – especially with my team and the coach. I skate four times a week, so it’s also really good exercise.
What do you think the biggest challenge of living with diabetes is?
The testing – having to test all the time. And how you can never predict what your blood sugar is going to do: you’ll eat something and know how much insulin to take, and it works… And then the next time you eat exactly the same thing and take the same amount of insulin and it doesn’t work, for some reason.
What advice would you offer to diabetics who are struggling?
Get support: that’s the one thing you need, you can’t do it alone. Also be aware that parents go through the highs and lows of diabetes just as much – my mom does so much for me, I don’t know what I’d do without her.
What makes your life sweet?
Just my friends and family around me, helping me through any situation and offering support if I need it. That’s what makes my life sweet.
Get in touch with Rachel: firstname.lastname@example.org
There are no two ways about it: insulin is a miracle drug. It was discovered in 1921 and has saved millions of lives in the last 95 years. Andrea Kirk explores the topic.
“In people with Type 1 diabetes, insulin is essential for maintaining good health, and many people died from Type 1 diabetes before insulin,” says endocrinologist Dr Joel Dave. “Insulin therapy is started as soon as the diagnosis is made, and although being diagnosed with Type 1 diabetes can be a traumatic experience, with the use of insulin, you can maintain good health and achieve anything in life that those without diabetes can.”
For people with Type 2 diabetes, however, there is often a reluctance to start taking insulin. Some people manage to control their blood sugar without it, by making changes to their diet, getting more exercise and going on oral medication. But for others, insulin is a necessity.
“There’s a huge stigma about this,” says Mark Smith, who was diagnosed with Type 2 diabetes a year ago. “I feel like starting insulin would mean that I’ve failed at controlling my blood sugar with lifestyle changes.”
Diabetes educator, Jeanne Berg, sees things differently. “Diabetes is a progressive condition and insulin therapy is inevitable. Some people take longer to get to the point of starting insulin than others, but every patient with diabetes gets there eventually. There shouldn’t be any shame or sense of failure in this.”
Jeanne says that in the past, doctors would try to intimidate people with Type 2 diabetes into changing their lifestyle. “They’d say: if you don’t change your diet and get more exercise, you’ll end up blind, or have your legs amputated, and eventually you’ll die.” This blame-filled approach may be part of the reason there is still such a stigma associated with Type 2 diabetes. “People would think ‘this is all my fault, I did this to myself’, but that is not the whole truth,” says Jeanne. “Diabetes has a genetic inheritance factor to it as well.”
Doctors and diabetes educators today steer away from using scare tactics and encourage people to accept insulin as a means of coping and having a more flexible life with diabetes.
Are there any benefits to starting insulin sooner?
“In people with Type 2 diabetes, there is a theory that glucose can cause damage to the beta-cells of the pancreas, which are the cells that make insulin,” says Dr Dave. “The longer the glucose remains high, the more damage occurs. Since insulin is the best way to lower blood glucose, some suggest that insulin should be taken sooner rather than later in order to preserve beta-cell function for longer.”
The day that you are diagnosed with diabetes is a day that is hard to describe. The world stops but at the same time a neverending rollercoaster ride starts: one you never asked to get on in the first place.
I remember sitting in the doctor’s office and a funny thing happened: he said the test results came back and you’re a Type 1 diabetic. After that I was in shock. The funny thing is I knew that he was talking because his lips were moving, but honestly I have no idea what he said. It was all a blur to me. All I remember thinking is: how can this happen? I never ate much sugar and now I’m going to die. But at least I have an answer to why I’ve been feeling so sick the last few months.
After the shock set in, I remember going to the book shop to basically buy any book that had been printed that mentioned the word diabetes, and then reading them all and being more confused than ever as they all contradicted each other. After the initial diagnosis, the doctor suggested that I go and see an endocrinologist.
Well, I saw a few of them and what they were all good at was sitting me down and telling me the negative side of the disease. How you can lose your eyesight and your feet and how if you get wounds there is a good chance they won’t heal well. Then in the next breath, they explain that now you will need to go on a strict diet and inject for everything you eat ever. They seem to wonder why you look so depressed and have an attitude of, what’s the point to life any more?
At some point during the initial diagnosis, it seems we all go on a sort of autopilot. We inject when needed and ask every question we can think of, and blindly trust what our doctors say, because they’re the professionals and know what they’re talking about, right?
What we don’t realise then is that diabetes is a common condition but it’s also very individually based. What makes my levels go up can have no effect on a friend’s levels. The other thing we learn on our journey is that at some point all diabetics and carers become doctors, dietitians and endocrinologists. The only difference between us and the real doctors is that they have diplomas and we don’t, but we have the life experience and they don’t.
What I have learned the most in my love-hate relationship with diabetes is that while I hate the constant management and daily injections, being diabetic has made me a stronger person and taught me to stand up for myself. In a weird way, it has given my life a kind of warped purpose. So I guess I will always love to hate being diabetic. You know what? That’s actually okay and totally healthy.
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.
It might seem as though being a restaurant chef would be too tempting a job for a Type 1 diabetic, but 30-year-old Vanessa Marx has made an art out of making healthy food delicious – and accessible.
When did you find out you were diabetic?
I was about sixteen and in high school – seriously bad timing! I had all the usual symptoms. I was drinking about four litres of water a day and falling asleep during class because I was so exhausted. My mom eventually suspected diabetes and I had to be hospitalised. It was a traumatic experience. I’ve always loved food, and I remember lying in my hospital bed naming all the foods I could never eat again… It was a long list!
How has diabetes changed your daily life?
That’s a hard question, because it’s so much a part of my daily life. It can be difficult, sometimes, explaining to people who don’t have diabetes how you’re feeling. If I wake up with low blood sugar, for example, I’m exhausted before the day begins. People understand a throat infection, but they often don’t understand what waking up low feels like. As a head chef, I need to be alert every day, taking charge of the kitchen. There’s no room in a busy kitchen for feeling tired or unwell because of high blood sugar or needing time out to have something sweet because of low blood sugar.
Isn’t it difficult to be around food all day? How do you resist sweet treats?
It is quite tricky! Often just the act of making sweet treats for someone else satisfies the urge for me but other times I’m pretty tempted: what puts me off is that I know how I’ll feel later. I do believe in “everything in moderation”, so I allow myself a treat now and then. As long as it’s a once-off, and I’m not doing it every five minutes!
What advice would you offer to other diabetics?
Be disciplined! Pay attention to your diet: what you eat plays a huge role in how you feel. Also don’t feel like you’re on your own, don’t be afraid to ask for help – talk about your diabetes, and explain to those around you what it feels like. There’s still a stigma around diabetes, that it’s only people with weight problems who are diabetic. But the only way we’re going to change that is by talking about it.
What makes your life sweet?
My family and friends, and my work.
Get in touch with Vanessa: @vanessajaynem on Twitter and Instagram