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Advice for people with diabetes and their families

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Diagnosis

Knowing where to start with your diagnosis of diabetes can be a challenge. But it’s not a challenge you have to face alone. Here we share stories from people who recall how they came to terms with their diagnosis and adjusted to life with diabetes.

Sean Carter-SelwoodDiagnosed with type 2 during the Covid-19 pandemic

Being diagnosed with diabetes

January 2020 began with me feeling pretty good. I’d decided to head to the gym to lose some Christmas weight and just feel healthier – as we all do in the new year. However, a few weeks later I started to feel quite rundown and dizzy, with pain in my kidneys. The pain got so bad I ended up visiting the out of hours doctor one weekend. They suspected kidney stones but when they tested my urine, they noticed my sugars were really high. The doctor decided to do a finger prick test, after which he said, “Well I’m not sure what’s wrong with your kidneys but you’re definitely diabetic.” I was handed a prescription for metformin, told to take two a day, and then book in with my usual doctor. A week later I sat at my GP surgery and was told I had an HbA1c of 111mmol/mol. At this point though, they couldn’t tell me if I had type 1 or type 2.

My diagnosis came as a real shock – I was 27 at the time. I didn’t really know very much about diabetes, why it was bad or what it could lead to. I just knew it was something to do with sugar. My grandfather had type 2 diabetes, but he had died when I was young. Looking back, I wish I had known more about it before I was diagnosed, then perhaps I could’ve prevented it. At the time I was in the obese category on the BMI scale and would describe myself as a bit of a couch potato. I work in an office job, which can be a dangerous environment – you spend much of the day sitting at a desk and there’s always cake about. 

Read Sean Carter-Selwood's complete story
Jayne smiling into the camera

JayneDiagnosed with type 1 diabetes aged 30

Coming to terms with my diagnosis

I was diagnosed with type 1 diabetes when I was 30. I had developed an infection but my body began to fight itself, and that’s when the doctors picked up my condition. 

My mum had type 1 diabetes too, and I remember how I used to watch her injecting herself every day when I was younger. But that’s all I knew about diabetes really, so I signed up to a Dose Adjustment for Normal Eating (DAFNE) course to learn more about my condition. It was quite classroom orientated back then, and it didn’t really change my mindset. I thought I was young and invincible. 

When I was diagnosed, I was told to start injecting insulin. But I thought that I would be able to lose weight if I didn’t take it. That’s why I was really irregular with my injections for two to three years after my diagnosis. I would go days, sometimes a week, without taking any insulin, but I thought I would be fine.

I lost a lot of weight – I think I was about seven and a half stone at my lightest. And in 2005 I went into diabetic ketoacidosis (DKA). I had been vomiting up blood and was rushed to hospital. That was my first real warning that my body wasn’t coping and things had to change. 

Read Jayne's complete story
Ted's story

Ted LambFound out he had type 1 diabetes when he was aged 16

Being diagnosed and getting treatment

I was diagnosed with type 1 in July 2005, right at the end of school when I was 16. I think I went through a fairly standard set of problems before diagnosis, a few days of severe lethargy and thirst (with the constating peeing associated with that!) and I lost a lot of weight very quickly, which for several months afterwards was a big problem for me with the consistent high blood sugar. I didn't notice it so much at the time but looking at old pictures you can see how sick I was! I was definitely confused when I first found out I had diabetes. I didn't understand how or why I'd been stuck with what I thought was such a raw deal considering none of my family have it. I felt fairly isolated from my friends as they weren't going through the same thing at the age of 16.

The initial treatment was from the team at the Bournemouth Hospital Diabetes and Endocrine Centre, and still is 15 years later! I was given the Novorapid and Lantus pens, as well as my first BG meter and a whole host of info leaflets and a couple of books to help me out. The team in Bournemouth have always been amazing and so supportive.

To be honest, I feel the treatment I receive now is fairly similar to when I was first diagnosed. However, the fact that I can email my healthcare team if I have any problems and get a really quick response is a really big difference compared to when I was first diagnosed. I feel there is a lot of information online that you can take advantage of if you feel like you need the help.

I think as tough as type 1 can be, it's also made me far more resilient than I would be without it. The highs and lows still happen, whether that's with blood sugar readings or emotionally, but having the condition keeps me focussed on making sure I'm making the most out of anything that I do, because you never know when your health can change for the worse. I take the condition day by day and I don't worry if I have a bad day, because you can always make the next day better, be realistic about what you can do because of the condition but also stay positive because it could always be worse.

My friends and family, especially my mum, have been amazing. They definitely understand the dangers of the condition but they have always been incredibly supportive.

They understand the physical effects and know what I need to do in most situations, or even if not exactly why, they know to take it seriously when I tell them something is wrong or if I'm not acting myself because of a hypo. I think my girlfriend is the only one who really knows how much of a mental drain it is sometimes though.

Read Ted Lamb's complete story
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Heidi QuineDiagnosed at the age of 12 in 2001

School concern

My mum passed away when I was aged 11 and I was diagnosed with type 1 diabetes a year later after starting secondary school. 

I was suffering from constant dehydration, going to the toilet all the time and had no energy to walk up the school stairs. As an active individual, this caused some concern at school. A few people thought I may be bulimic because of my weight loss. I was never a big child to begin with and when I got sent to hospital after being diagnosed, you could see my skin and bones.  

After my PE teacher asked me if everything was OK, I went home and spoke to my dad about the weight loss. At the GP, my blood sugar was so high it was unreadable. I went straight to hospital and was put on a drip. I stayed there for five days until my dad and myself could complete my insulin injections and I was gaining a little more weight again. 
 

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Nicole Smiling

Nicola PflugDiagnosed at 14

Learning to manage my diabetes

I was diagnosed with type 1 diabetes just before my 15th birthday. It was my mum who recognised the symptoms, as she has a friend with type 1. I was taking part in a dance show at the time and she couldn’t believe how much water I was drinking, how often I was getting up in the night to go to the toilet, and how gaunt my face was becoming. 

I didn’t have a very positive experience in terms of my diagnosis and care. A locum doctor put me on metformin and sent me home, but thankfully my mum took me back a week later to see my usual GP, who tested my bloods and sent me straight to the hospital. 

Things have changed so much since then, but back when I was a teenager I was suddenly being told what I could and couldn’t eat. Who wants that at 15? So I used to eat chocolate in private and not tell anyone.

At the age of 18 I was discharged from the hospital and told to visit my GP for all my diabetes checks. I thought this meant I was getting better, so for many years I just winged it with my diabetes. I thought I was doing ok taking my two injections a day, which I had been prescribed at the clinic as a teenager.

However, I wasn’t checking my blood sugars; they were always high and I was embarrassed that I didn’t know what I was doing. It was only years later when I saw the practice nurse and told her that I didn’t have a diabetes team, that she explained how vital this was and that I needed to attend screenings. 

Read Nicola Pflug's complete story
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