Surviving diabetes: My journey into remission

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The beginning…

The world revolves around food – parties, dinners, teas – every social event is a feast, and the food is how we show each other our love and hospitality. Food punctuates our lives’ events.  Ultimately, we are all foodies and, as our earning potentials have improved, our diets have changed.  The foods we ate as a treat has become our go-to meals on a daily basis… we write about food, we look at food all day long on social media and we dream about which next premium restaurant we will go to for that thrill of something new.

I had always been a fastidious foody. The fun one who’d never say no to seconds and could drink most men under the table, always a big girl.  But also always on some gimmicky diet that would help make it better. The fat lady that kids pointed and laughed at; I was the fat friend and the fat daughter (ergo the ugly sister).  At my most, I weighed 15 stones (98 kilos); most fully grown men weigh less then I weighed. I didn’t often get on the scales and when I did the number didn’t mean anything to me.  Why would it? With all the talks of positive body images, “…fat is beautiful too…” I believed it. I was fine just as I was.

When did the number on the scales start to mean something?

I had met the man of my dreams, who was also foody. Our love for food connected us…. and he loved me just as I was. Exactly as I was. Being in love and happy, I dropped to 12 stones without really trying and I was so pleased with myself.   After a whirlwind romance and wedding, I very excitedly discovered I was pregnant… I was so happy, content. I now had validation for getting fat! I could eat what I liked… I’d legitimately be able to crave foods and enjoy them to my heart’s content. Obviously, that wasn’t my first thought, but it was one of them in my mix of emotions and wonderings.

My diagnosis… during pregnancy

Early days and routine blood tests all looked ok… blood pressure was a little high. Quick pinprick blood sugar check at my routine antenatal appointment: blood sugar 19. Hmm sounded a little high. I knew because my dad is diabetic. Still didn’t mean much to me… maybe it was the morning’s breakfast I thought. Until I saw the look of sheer panic on my nurse’s face. I sat dumbfounded. And the room stood still. Time stopped. I felt dizzy and the room closed in. She ran to get the doctor. I still didn’t quite understand the magnitude of what this meant. I went into the surgery for a routine check… and walked out a diabetic.

Equipped with insulin, a book to record everything, a pricker to prick, strips… and tears in my eyes. Just as a new life was to begin, I felt mine had ended. I’ve never seen medical staff work so quickly. I was immediately referred to the specialist pregnancy diabetic unit at Barnet general… and they saw me the next day. Because what I didn’t know was that diabetes in pregnancy is dangerous – so dangerous that 30 years ago diabetic women were advised against pregnancy because the outcomes were almost always fatal or extreme congenital malformations during the pregnancy. I soon replaced all my pregnancy books with “Diabetic and pregnant”; you see it’s not quite the same. The pregnancy isn’t the same, labour isn’t the same. Everything is different. I couldn’t allow myself cravings and I certainly couldn’t indulge.

I still thought about food but the categories changed. Foods that I was allowed. Foods that I wasn’t allowed. Food that my body could cope with. Food that made my sugar levels go high. High GI, low GI… Before long I was taking 30-40 units of insulin a day and still battling against already high blood sugars. My pregnancy lasted 12 weeks – the day we announced it to the world was also the day I miscarried. There’s nothing like that feeling of loss. And guilt. I blamed myself – my body – for killing my baby. It didn’t make sense to me, I’d lost weight and I’d done what you’re supposed to do. How did I become a diabetic just like that? And how had this condition taken my baby?…

I was 26 and I felt like my whole life had ended

When you’re foody who doesn’t eat “fun food” any more there’s not much left of your identity. It was, and is, a massive taboo; I couldn’t tell anyone. I’d failed as a woman – I’d miscarried. And I was a diabetic. Both matters of shame. I felt like I was mourning my health and my baby both at once. I’d torture myself with questions, like how didn’t I know?  I’d look back at growing up for any signs that I had this condition, I thought I must be predisposed to it because it ran in the family on both sides.  Did it explain all my previous infections and trouble healing? Is it just that genetics?

Living with diabetes

I continued under the care of the exceptional team at Barnet general and saw a dietician. I even managed to get good control. Under their excellent care I went on to have two successful pregnancies as a diabetic…. (not an easy thing to do, I was on over 120units of insulin a day by the end of each pregnancy) injecting many times a day. My life became about controlling my blood sugars and less about weight. But because I was careful, I lost weight in both pregnancies. After my second pregnancy, I weighed 11 stones. Less than when I married.

I’d become a patient and my poor husband my carer. He’d know by looking in my eyes when I felt low or needed help. He was always there by my side and I’m incredibly grateful. The times I’d come downstairs and demolish a drawer of stuff semiconscious, he’d watch helplessly, concerned but aware that I’d flare if he came near. It isn’t easy being a partner to a diabetic… and diabetes is for life, right? You can’t cure it. This was my bed and I’d have to die in it. And he would watch as I suffered. Because it is suffering. It’s not a nice experience. I knew diabetes killed. I knew it rotted your insides slowly. And I knew that it would take my life in the same way it took my dad’s. I’d read stories where people claimed they had put their diabetes into remission and I’d dismiss them. Everyone knows you can’t undo diabetes, it’s for life. At least that’s what I believed.

The next 10 years as a diabetic

I learnt about every diabetic regime and care plan, I read every article. I tried every remedy… that everyone suggested. Karela tablets, okra juice. I was on maximum oral medication, and injections. Everything that could medically be done was done to control my condition. There were complications and shocks. I never had any good news medically. If it wasn’t my eyes and vision it was some infection. Statins for cholesterol, tablets for high blood pressure. From hypos to hypers, I spent hours weekly filling up a pillbox… and calculating with every meal how much insulin I might need.   It changed everything, from insurances to my medical driving license, travelling/flying with medication. Being a diabetic became my whole life. And all whilst not letting people know. Quietly behind closed doors. Tracking it, monitoring it. Keeping it stable. Not eating, controlling it. An ugly Medusa-like creature that completely took over my life.

Over the years, I’d watch at weddings and functions where obliging wives would follow their husbands and ensure they had eaten and taken their insulin. Whilst I hid in toilets to take mine. Ever wondered why that women’s line is longer at the toilets…? I was left wondering how many of them had the same secret. I’d watch and speculate as I’d wait my turn. Hypo-Ing and treating in silence whilst breaking out in sweats. Heart palpitating. Explaining away confusion as a dithering moment. A select few who knew maybe understood. Others considered me rude for leaving the table or not helping at events. Explaining to my children that they couldn’t have a sweet treat, but mummy needed it as medicine. And that injections aren’t bad… and that they don’t hurt. That pricking 8-10 times a day doesn’t hurt. Fingers hardened, riddled with holes like a pin cushion. Every time they say they’d ask “You won’t die will you mummy?”. And I’d say “…everyone does, some sooner some later…” I don’t like to lie to them. Feeling guilty of putting them through this with my failing body. Hating my body and myself, genuine fear that it would be ‘sooner’ for me… and the devastation I would leave behind.

Tackling diabetes with exercise

I started to run and that helped with my diabetic control. I wanted to live for my children and show them that mummy was trying to beat this condition.  This too wasn’t easy, try running and managing your blood sugars with a manual tester. Stopping to prick and test. Eating to avoid a hypo. But not too much or you’ll be high for the rest of the day.  Always coming behind on your target time, failing yourself. Fear of hypos every mile you run… fighting the illness with exercise. The illness fighting back, making it harder and harder to achieve your goals. The Libre and other gadgets are coming onto the market, but are expensive and not available to everyone. And I couldn’t justify the £50.00 a fortnight… and the few hundred it is to purchase. Something had to change so I could enjoy running without fear of hypos. I always worried I’d die out there because I’d confused a hypo and the adrenalin rush of a run! So if exercise alone wasn’t going to fix this, what would I do…?

A turning point

I’d tried exercise and I’d lost almost 4 stones slowly and steadily, and then I decided to do something I said I would never do – because it was for “fatter” people and I wasn’t vain.  I joined Slimming World.  The same magazines I’d scoffed at, and stories I’d read with ridicule over the years.  I’d also read in recent papers that the NHS had been recommending it since 2014 and even paying for nurses and doctors to go on the plan. I needed to take drastic action – my diabetes was getting worse even though I felt I had made every effort to get good control. It was the prompt I needed.  Here I learnt a new way to eat… and I started to eat again after so many years of avoiding food.  I made some really good friends that supported me.

And then it happened…

Exactly 10 years after my diagnosis… I am in remission. I am in remission. I have to write that twice to believe it. The impossible is true – you can go into remission. It is possible. I wish I had done it sooner. All I know now is that if I can do it you can too. You just have to do things a little differently. And it really is all about losing weight or specifically fat from your organs. Nobody told me that. I now know that even those who slim down and continue to have type 2 diabetes do so because the fat is there on the organs.  And that is what we need to target.

I did it!

My remission is a by-product of my active effort to lose weight. I’m days into remission and dusting off my running shoes… I’m eating more than I’ve ever eaten before and lost weight. I’m not quite where I’d like to be. But I weigh less now than I did when I was 9! At 9 stones 9 lbs it’s the lowest I’ve weighed in my adult life. You have to find what works for you. I’ve adapted it along the way and titrated my medication down responsibly. Look for healthy ways to lose weight and believe that you can. Include exercise in your lifestyle, make walking the norm, and it could happen for you. The battle isn’t quite won. There are years of damage that still needs to be undone. And my body is healing albeit slowly… but the injections have stopped. I’ve also stopped statins and high blood pressure medication. And I can breathe again. I can dream of food again (just in a different way!)

Why is my story important?

In 10 years of dealing with diabetes, I have never met another girl who has shared this story with me, and I know that statistics show that this simply can’t be true.  It is important so that no other girl walks this journey alone, no other woman feels ashamed of an illness that doesn’t discriminate against age or gender. My message is for my daughters and all the other girls out there – look after yourselves. There’s no shame in sharing this story, it takes strength to live with it and it takes perseverance to get through it. You may not reach remission. But you could better the prognosis of your condition, slow down the rate at which it impacts your body and damages it. Eat good wholesome food, respect your body. Don’t be the diabetic that eats the cake because it would be rude not. Learn to say no to the things that don’t feed your health and yes to the things that heal it… it’s not going to be easy but diabetes isn’t easy either. And if you can live with it you can put that same energy into fighting it. There’s no quick-fix medicine, herbal or otherwise. You have to change your mindset. And your lifestyle. And you too can be in remission. Eat food that’s good for you – builds you up. Do it for your family, do it for your children, so you can say you gave it your best shot. Choose them… Choose yourself.

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Pls, share if there’s someone out there who you think might benefit from my story.

You can follow my food journey on Instagram shivali_modha and I’ll happily answer any questions you might have.

Please show your support for a charity that works closely with the South Asian community on Health matters: https://www.sahf.org.uk/

Or Diabetes UK they do some great work with Diabetes in the UK.

You can follow my food journey on Instagram shivali_modha and I’ll happily answer any questions you might have. 

Useful apps

MySugr – fab for monitoring and recording
Fitbit
Runkeeper
7 Min workout

With thanks to

Dr Cohen & Team Barnet General
Dr Moman & Julia at Barnet station rd. surgery
Torrington Park eye care
Bhavik Acharya Ophthalmology
Dr Kartik Modha
Dr Yogini Jani
Slimming World friends
Diabetes UK
My family for always being there
My husband and children for motivating me to live

This article is for information only and should not be used for the diagnosis or treatment of medical conditions. myHealthSpecialist makes no representations as to the accuracy or completeness of any of the information in this article, or found by following any link from this article. Please consult a doctor or other healthcare professional for medical advice.

shivali_modha
Shivali Modha