Jane Mapfungautsi – The reality of peripheral neuropathy

Jane Mapfungautsi details what she thought was a heart attack to be peripheral neuropathy, a complication of poorly-managed glucose levels.


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Jane Mapfungautsi (54) lives in Kanye, Botswana. She is a single mother of three, Rungano, Rutendo and Ashley.

I have had Type 1 diabetes for 44 years; it has been a long journey with its many ups and downs; hypo attacks; hyperglycaemia; hospitalisation; doctors’ visits; diet adjustments; insulin shots and so the list is endless.

I always assumed that my glucose levels were well managed, but it was the contrary. Early last year, I was watching television and all of a sudden, I got like an electric shock in my right arm and chest. The pain was so sharp and intense. I thought I was having a heart-attack.

Debilitating pain in arm

The next day, I woke up with a swollen arm. I couldn’t lift my arm; it was extremely painful and felt heavy, and every single movement would make me belch.

After consultation with my local GP, a number of blood tests were run which showed that I had a bacterial infection in my ulcers. They also said I had a burst vein. I was prescribed a range of antibiotics and painkillers and started physiotherapy to help me with my arm. The ultrasound and any movement would make me scream in pain and I was belching all the time.

For the next four months, I was still in pain. I couldn’t lie down to sleep, especially on my right side. Any movement of my right arm (elbow, shoulder, wrist, fingers) would make me belch and that isn’t a pleasant sound at all.

I couldn’t write on the board (I’m a teacher), stir while cooking, or stretch my arm to close the car door. Using the bathroom was a task and a half.

I would lie down to sleep for a few minutes then a piercing pain from my shoulder down to the fingertips would start so I would fall asleep whilst sitting, surrounded by pillows. Most nights I would be crying in pain. I would have numerous hypo attacks and my blood pressure was often high because of the pain. Plus, I lost a lot of weight.

Re-diagnosed

I had prescription after prescription of heavy painkillers. The issue of a burst vein was ruled out after I had a Doppler scan done. An imaging test, called a barium swallow test, showed what I already knew that I had an irritable bowel system.

I lamented my issue to a friend of mine who is a doctor studying in the U.K. After consulting her colleagues, she advised that it could be peripheral neuropathy, and now the phrenic nerve which is connected to the upper diaphragm was making me belch whenever disturbed.

At the same time, I was referred to another specialist physician and I had MRI of the upper abdomen and spine. It reflected nothing much. However, this specialist also said it was peripheral neuropathy.

He explained how peripheral neuropathy damaged the nerves (in my right arm) caused by long-term poor management of blood glucose levels.

Pain dates back to 22 years ago

He reviewed my diabetes history. I had always had this pain in my right hand since 2002; back then I was prescribed carbamazepine (an anti-convulsant) to be taken once every day, together with paracetamol when the pain was intense. In 2018, it was changed to gabapentin, taken together with paracetamol and vitamin B Complex.

I also realised that in winter, sleeping with my gloves on and holding a hot-water bottle helped. This is what I still do, especially when it’s cold.

So last year, following my so-called heart attack, the specialist clearly explained to me the extent of the damage to the nerves in my right arm. I learnt that other diabetic patients suffer pain in their legs.

Pain management

As nerves can’t be repaired, all he could do was help me manage the pain. Instead of prescribing the next line of nerve-blockers, he increased my daily dosage of gabapentin, to be taken together with a painkiller, celecoxib (an anti-inflammatory), paracetamol and amitriptyline to help me sleep.

Because some of these meds are addictive and can harm organs, I have managed with the help of my physician and pharmacist to cut out the pain killer and take amitriptyline only when necessary.

Every three months, my liver and kidney function are checked, together with the other routine blood tests.

It’s encouraged to exercise the arm (watering garden with a bucket; dipping the hand in warm water with a stress ball; cooking; sweeping and mopping floors).

These days, I feel pain in cold weather or when I have overworked the arm which makes the hand swell up. I also have to rest enough, eat well and watch my blood glucose levels. In winter, I need to keep extra warm.

Grateful to healthcare team

The greatest lesson I have learnt is that poorly-managed glucose levels can damage eyes, kidneys, nerves and even cause death. We as people with diabetes need to be very careful.

My deepest gratitude goes to the team of doctors and nurses who always go out of their way to help me stay on my feet. My children are my greatest support team.

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET THE EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Lorraine Makohliso – My journey of resilience and transformation

Single mother, Lorraine Makohliso, shares how accepting her Type 1 diagnosis started off as a bumpy ride but turned into a smooth-sailing transition.  


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Lorraine Makohliso (32) lives in Bothasig, Cape Town with her two sons, aged 13 and nine.

Diagnosis

In October 2021, just three months after celebrating my 30th birthday, I received a life-altering diagnosis: Type 1 diabetes. Prior to the diagnosis, I had experienced significant weight loss, attributing it to stress and challenges in my life. It was only during a medical consultation triggered by an adverse reaction to the COVID vaccine that my elevated glucose levels, measured at 23.0, were revealed. This critical discovery led to my immediate hospitalisation.

The moment the doctor confirmed my diabetes diagnosis was the scariest day of my life. A wave of dizziness and shock hit me, and the thought of not being there for my children was overwhelming; my world revolves around their well-being and happiness. I vividly recall clutching the doctor, seeking reassurance amid tears, and his comforting words that it would be okay.

Initially, I struggled with self-pity and anger. Being diagnosed with diabetes at such a young age challenged my love for cooking and baking, which had always been my sanctuary.

Resistance turns into a good transition

The transition to insulin, specifically long-acting insulin glargine, gliclazide, and metformin, was met with resistance due to my aversion to injections. However, as time passed, and I adopted a healthier lifestyle, the positive changes were undeniable. I regained lost weight, my overall well-being improved, and hope was restored.

Despite the initial challenges, being on insulin became a turning point in my journey. Regular exercise, including gym sessions four times a week and jogging with a friend in the evenings, became integral to managing my condition. Engaging in activities like walking on the treadmill, attending aerobic classes, or cycling based on my body’s signals significantly contributed to stabilising my glucose levels.

My sons were also both scared and didn’t know how to handle my diagnosis. But as I accepted it and learned more about my condition I thought of them as well which helped them be more at ease more. Now they take care of their health as well and are mindful of what they put in their bodies which is great. They check their readings once in a while. I love how supportive they are.

Supports groups made the biggest impact

Joining various diabetic support groups and information hubs, like Diabetes South African Facebook page, provided me with a sense of community and understanding.

However, it was the Diabetes Warriors WhatsApp Support Group that became a lifeline. The insights gained from fellow members, ranging from monitoring readings to identifying triggers, proved invaluable. Through this group, I discovered affordable meal ideas and learned about the nuances of living with diabetes. The camaraderie and support offered by this community have been transformative, eradicating any sense of isolation.

Embracing my different lifestyle

Today, I approach life with diabetes not as a life sentence but as an opportunity to embrace a different lifestyle. My fellow support group members have become my extended family, a source of unconditional love and kindness. Their constant support and willingness to share knowledge have made this journey more manageable, proving that life with diabetes can be rich, fulfilling, and filled with hope.

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET THE EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Nosisana Mankayi – Taking it in her stride

Nosisana Mankayi handles her diabetes with a calm head and determination to manage it, thanks to her parents showing her that it doesn’t have to be a struggle.


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Nosisana Mankayi (61) lives in Cotswold, Port Elizabeth. She is married with two adult daughters.

When Nosisana was diagnosed with Type 2 diabetes in 2016, the news wasn’t too overwhelming as both her parents had diabetes and they both lived good healthy lives with the condition. So, Nosisana felt confident that if she managed it well like her parents, she would also live a good long life.

However, she admits that there are days that she does find herself stressing about her condition.

She was prescribed chlorpropamide which was working well up until the end of last year and so another medication was added. Nosisana will go for her check-up in the next few months to see if the added medication is working well.

For exercise, the 61-year-old teacher walks on the weekends and during school holidays. She says she doesn’t have a specific eating plan but does try and eat healthy.

She adds that she is open with her Grade 10 – 12 learners about her diabetes and will openly talk about it with people.

Nosisana is grateful to her friend Pamela Molefe for introducing her to DSA Port Elizabeth support group as she has gained much knowledge about diabetes with helpful info and tips to  manage her condition.

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET THE EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Russell Smith – Big in Japan

Russell Smith, a professional photographer, shares his food experience while travelling in Japan and how he had to adjust his insulin dosages.


Russell Smith (52) lives in Cape Town with his wife and two young sons.

Type 1 diagnosis

I was diagnosed with Type 1 diabetes when I was 13 years old and currently inject four times a day, using a combination of rapid-acting insulin (insulin lispro and insulin aspart) as well as long-acting insulin glargine.

When I was newly diagnosed, I started off injecting only twice a day but have found using this current method, I have more control and flexibility around my meals and their times of day.

Professional photographer

For the past 21 years I have been a professional photographer. I discovered that I preferred photography while working as an art director with photographers which I did for several years both in South Africa and abroad.

I love playing with light and have delved into almost all of the genres of photography over my career but have finally stuck to portraiture, lifestyle, still life and food, both in studio and on location.

As part of my non-commercial passion for taking pictures I love to travel with my camera. Every few years I have been fortunate enough to visit places on my own or accompanied by a friend without the responsibilities of family life and free to wake early for sunrise or make long trips on a whim. Things I could never do with young kids in tow.

I’m extremely grateful to my wife who lets me explore and gives me this time to shoot travel.

I love that travel photography is a combination of everything. It’s a little reportage of street photography, interiors, food and portraiture as well as landscape and still life. Being in new environments wakes the senses and makes me see what I sadly probably take for granted at home where I live.

Cherry blossom season in Japan

In late March, early April this year I went to see and photograph Japan during the cherry blossom season. I had done extensive research beforehand by reading what photographers’ rate as worthy of precious time and even the time of day to be there.

The blossoms are magical and make for great subjects to shoot. The weather was a little overcast and even rainy during this period, so I had a little time to shoot with blue skies. The time of the blossoms is also fleeting and moves up and down the country. When I left Tokyo to visit Kyoto and Osaka, the blossoms had already disappeared in Tokyo on my return a week later.

Travelling with diabetes

Having diabetes when travelling, I’m constantly aware that routine is my friend and that regular meal times and correspondingly injections are helpful in keeping my blood glucose in check. I can predict the meals and times, and with the familiarity of that I know how much to inject every day.

However, this is also made more complicated by the different food and ingredients in different countries. I also tend to walk a lot more so there is a lot more exercise, and sometimes I am not even aware of it.

Low glucose levels in Japan

My experience in Japan as a person with diabetes was pretty interesting and unique.

I carry a lot of sweets with me when I go abroad so that when I experience hypoglycaemia (low blood glucose), I have them on hand where ever I may be, up a mountain or in a remote village. I thought I had enough for my whole trip. Side note: I find Mentos easy to carry and don’t melt in hot weather.

After a few days in Japan, I found my glucose levels dropping all the time and I was having to dip into my sweets supply and constantly lower my insulin intake. But this didn’t help, it kept dropping until after a week of being in Japan, I needed to buy a new supply of sweets to see me through. It was very confusing at the time and I only managed to gauge the correct dose of insulin near the end of my trip. I had significantly reduced the amount of insulin I was taking by this time.

It was only when I returned to South Africa and decided to share my new passion for Japanese cuisine with my wife at a local restaurant that I realised what was different.

No added sugar was the difference

Due to having diabetes for so long, I’m very sensitive to the taste of sugar in food and drink and immediately could taste the sugar in the Japanese ingredients in Cape Town. Almost as if our western palates needed the sugar to enjoy the food. Or perhaps masking something else?

What I became to realise is that in Japan they put emphasis on quality ingredients and don’t sweeten or add much else to their food. This goes across the board in Japan, even street food. I’m talking about savoury dishes but marvelled how subtle yet tasty the flavours were. Texture is also important in Japan and this can be experienced usually in small tasting bowls, again a substitute for strong flavour.

I wear a sensor patch now as well to test my glucose levels which has been an absolute game changer. This allowed me to not only read the rising glucose levels after the Cape Town Ramen (Japanese dish) but also to give me early clues to my lowering levels in Japan.

Low-carb dishes

The other big dietary interest in Japan was the low-carb food. It’s mainly seafood rice and noodles. I may be wrong and in parts of Japan it may be different, but I was cutting out on a lot of bread and heavy starch which I think added to the change of diet.

It made me really think about South African food and how it’s modified according to different palates. With so many people living with Type 1 and 2 diabetes in South Africa, why are we being exposed to high sugar foods constantly? Especially when we go to a restaurant and place responsibility on a kitchen to keep sugar as low as possible.

It took a trip to Japan and a big change in my levels to realise that it could be different and yes, we may be used to sweeter or more flavoured foods. Maybe this needs to change, and we will learn to change with it?

PLEASE NOTE: THIS WAS RUSSELL’S PERSONAL EXPERIENCE WITH EATING JAPANESE CUISINE AND THIS WILL NOT NECESSARILY BE THE CASE FOR ALL PEOPLE WITH TYPE 1 DIABETES.

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET OUR EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Afton Thysse – Managing diabetes during an unplanned pregnancy

Afton Thysse shares how she managed her Type 1 diabetes during an unplanned pregnancy and how her feelings impact her blood glucose levels.


Afton Thysse (35) and her son, Jaydon (4) recently moved to Boksburg, Gauteng from Port Elizabeth.

Type 1 diabetes diagnosis

In July 2013, I was in an armed robbery. Thereafter I started losing weight rapidly and consulted my GP. I was sent for a glucose test after which it was determined my pancreas had shut down due to shock. I would need to be on two types of insulin immediately and for the rest of my life.

My current treatment is a long-acting insulin every morning. Then I need to inject fast-acting insulin before every meal, for which I need to calculate my glucose reading as well as the sugar content of the meal I’m about to eat to get to the correct amount of units to inject.

When I was first diagnosed, the insulin started as a standard 10 units per meal and 12 units long-acting every morning and every evening. My doses steadily increased over the years until I was taught how to calculate and measure so I could adjust my own doses based on my glucose level and sugar intake at the time of injecting.

Pregnancy

When I fell pregnant in 2019, it wasn’t a planned pregnancy. When we found out, I had to go on a special diet to keep my blood glucose regulated throughout my pregnancy; it included less sugar and more healthy food. All the other rules were the same as it would be for any woman. Though, I was give guidance on where and how to inject and cautioned on eating according to my cravings. Strangely enough, I ate less during my pregnancy and didn’t have any specific cravings.

Regular check-ups were a must during the pregnancy; more information was shared on where we were in the pregnancy, what my blood glucose levels were, and how the next month or two were likely to go.

I was cautioned that miscarriage was common in pregnant women with Type 1 diabetes, and was a possibility as the pregnancy wasn’t planned and my body wasn’t prepared for this in regards to my blood glucose. This was hard to hear and caused negative emotions but it also gave me the drive to persist and do everything I needed to keep my baby healthy.

Birth of Jaydon

Jaydon, my son, was born one month premature and spent two weeks in neonatal intensive care unit (NICU) for monitoring of his blood glucose levels to ensure complete health before leaving the hospital.

He was a tiny little thing and is still small for his age, but he is happy and healthy, and that includes the naughtiness of a pre-schooler and all the fun that comes with that for me.

He understands that I have diabetes and knows how to help when my blood glucose drops: he gets me something sweet to help boost my glucose and knows where I keep my tester and how to help me test if I’m feeling weak.

Jaydon has recently come up with his own little attitude when I’m  moaning  to him about his messy room and toys all over the house. These days I get, “Maybe you should test your sugar, Mom!”

Food, fitness and feelings

Food

It’s important to understand that any and all food will have an effect on your blood glucose readings. The best way to handle this for me was testing every time I ate food. For example, I would test my glucose, have a banana and test two hours afterwards to see how it affected my glucose and whether I calculated correctly on the units so I could better adjust next time. Always remembering to only go up or down on the units by 1 or 2 units at a time. I did this with many different foods over time which has helped me with understanding what each food does in relation to my glucose levels.

I’ve learned each person with diabetes is different as our bodies aren’t all 100% the same. Therefore, we can’t apply the same basic rules for foods and medication to everyone. Each person with diabetes should get to know their own body, their own reactions to foods and their medications for a better understanding of how to look after themselves.

Diets aren’t for me. This is a sure way for me to become despondent; it becomes a why me feeling more than anything else. I feel deprived and can’t sustain this long term in my daily life. With a 4-year-old healthy son, there will be sweets and certain foods I’m not allowed to have. Realistically it becomes a decision between a healthy body but a depressed mother, or finding a balance between. I choose the balance between.

I cook healthy food for the family and inject correctly for what I know the meal will do to my glucose levels, and still have something nice but in moderation and carefully adjust my insulin to accommodate for this.

Fitness

Because I work from home, this means I don’t usually get out and about a lot. I get up from my desk every hour and walk for a bit, keeping my circulation going.

At the end of my work day, I do ball sports with Jaydon which keeps me active and on weekends we usually go to the park and I get in most of my walking. I don’t attend a gym or have a regular exercise routine. I found that I don’t stick to this and then get negative about not doing what I should. So, I built movement into my daily life and what works for me so I don’t set myself up for disappointment and despondency.

Feelings

I never realised how emotions played a role in impacting my glucose levels until one day Jaydon’s dad asked me to test my glucose while calming me down as I was having a mini meltdown. Naturally I had an emotional response to this in itself. However, I did a quick check and found my glucose was high. So, with me my emotional responses do go hand in hand with my blood glucose levels. Though, this doesn’t mean when I’m upset, I don’t have a valid reason. It’s just that my level of emotional response is slightly elevated.

When my blood glucose levels are running higher and I’m happy, I will be slightly more impulsive or agreeable. But when my blood glucose levels are going lower, I’ll be more inclined to do more relaxed activities (watch a movie, reading, nothing too busy) and the emotion will be more dampened. I shrug a lot more, the whatever-you-want-response is more prominent.

The flip side is when I’m in a negative space. High blood glucose means I might be more argumentative and complain about the house being left in a mess with toys all over the place. When my levels are running lower, I’ll have a more depressive response to the same things. It becomes more of a why do I have to struggle? Why does no one consider me and pick up their things around the house?

Understanding your body is important but understanding your emotional responses are just as important. This helps to acknowledge that you’re having a sugar response, find out what you are really feeling and adjust your mindset to balance out your reactions. This has helped me to not sink into unnecessary depression and also to give my family the best parts of myself. 

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET THE EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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Bernadette Gibbs – I’m not allowed to eat anything green

Bernadette Gibbs tells us how eating healthy can be an obstacle due to her not allowed to eat certain foods as she is on warfarin.


Bernadette Gibbs (53) lives in Mitchells Plain, Cape Town.

In December 2022, Bernadette Gibbs was diagnosed with Type 2 diabetes. She consulted with a GP as her hair was breaking and falling out and she was always thirsty.

She was prescribed metformin and advised to make lifestyle modifications, such as exercise and healthier food choices. “When I heard I had Type 2 diabetes, it took about a week for me to come to terms with it, reassuring myself that it could have been worse,” Bernadette explains.

“My nephew was diagnosed with Type 1 diabetes when he was seven years old. He is now 20. It’s been a long and tough journey for him and our family’s emotions, and I always have to remember what he has been through and still goes through, compared to my diagnosis. Thankfully, my nephew is extremely supportive, he always asks how I’m doing and constantly reminds me to take my meds.”

Diet is an obstacle

“Honestly, food is a tough one as I’m on warfarin (blood thinner) as well, and there’s lots I’m not allowed to eat, like anything green (so no green veggies). But, I try my best to eat as healthy as I can. Thankfully, my family supports me by all trying to eat healthy. We all look out for each other, and check up on each other, especially when one of us isn’t well.”

Bernadette says she has never been into keeping fit but she does walk often and takes each day as it comes.

Working at DSA

Bernadette started working at Diabetes South Africa head office in July 2023. Her duties involved administration. “My sister has been involved with the DSA Cape Town branch for a while due to my nephew having diabetes. She told me about the opening of a job and I applied and got it. I’m grateful for the opportunity I have been given as of course to work for an organisation that is doing good work in the diabetes community.”

Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on editor@diabetesfocus.co.za

MEET THE EDITOR


Laurelle Williams is the Editor at Word for Word Media. She graduated from AFDA with a Bachelor of Arts Honours degree in Live Performance. She has a love for storytelling and sharing emotions through the power of words. Her aim is to educate, encourage and most of all show there is always hope. Feel free to email Laurelle on [email protected]


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