At the age of 9, I was diagnosed with type 1 diabetes. I had become very poorly. 

I was tired, lost loads of weight and started drinking up to 10-12 pints of water a day. I felt thirsty all the time. I would bounce on the trampoline for 5 minutes and sleep for hours after. I went to the doctors and had lots of blood tests, and when they finally did a blood sugar test, my bloods were 17mmol/l. The doctor got my dad to take me straight to the hospital.

Emotions and diabetes

Being diagnosed was a scary experience, and I had to learn to inject myself up to 5 times a day. I had to learn about counting carbohydrates and different rations. Being in hospital was the worst. The food was horrible, all the noises from the various machines annoyed me, and the nurses kept waking me up every hour to test my blood sugar level. The one thing my family and I always remembered was when I was asked if I wanted to be woken up every hour or to leave me to sleep. My answer was “it’s my body wake me up”, and from that day I became a young adult very quickly. Before I could leave the hospital both my mum and dad also had to learn how to inject my insulin.

When we did leave, we left with loads of new things like books, diaries, boxes of needles, insulin pens, paperwork, and a great big cloud with a huge storm in it above our heads. As a family, we worked with it and just dealt with it as it came. My parents aren’t together, and they both dealt with it in different ways. My brother doesn’t deal well with hospitals or people being sick, so he stayed out the way.

It’s not always as easy as some people make it sound because they see it as just injection for the food you eat. People don’t take into consideration everything else that comes with doing the injections and testing your blood sugar levels.

I was very distressed when I was diagnosed with type 2 diabetes. It was discovered when I was being treated in hospital after losing part of my fingers in a work accident. It was the most difficult time for me. I thought my life was about to end. 

When I found out a cousin in Pakistan, who also had Type 2 diabetes, had had to have a foot amputated after gangrene set in following an accident I knew I had to take is seriously. Tragically the gangrene spread. She had to have more of her leg amputated and in the end that was not enough to save her life.

I started thinking seriously about taking control and trying to prevent diabetes complications, I thought if I am not careful I can go along that road as well. The future was a bit black. I thought I may not be able to see my grandchildren grow up.

Missing insulin doses was never talked about at my children’s clinic, but every time I went and my numbers were bad, they’d say: “If your levels are high for too long you could go blind”. But it was in a telling you off kind of way, rather than asking me if I was OK or needed help.

My mum was always warning me about diabetic complications, but because back then I wasn’t seeing an immediate effect, I just thought, “it’ll never happen to me”. Obviously, that’s not true, but because I wasn’t seeing the consequences it didn't sink in.

I got a pump when I was 17 and started off really well on it, but I soon lost motivation. I rarely tested my blood sugar levels and I started realising that the less insulin I did, the easier it was for me to lose weight.

Then, when I was 18, I got moved into an adult clinic with no warning. It felt like I became a number in a system rather than a patient. I’d turn up and there would be a roomful of elderly people with Type 2. 

Every time I went I saw a different team and would have to explain my entire medical history. It felt like it wasn’t worth my time, and I certainly wasn’t going to have a conversation about what was going on with people I didn’t know. I tried once or twice — I mentioned a few times I was concerned about my weight and burnt out with diabetes but quite a lot of the time I'd be met with things like, 'well make sure you do your blood tests because they're really important.' So, after a few appointments, I stopped going.

My low point

There were some really low points at university, I didn't really want to get out of bed. I had no motivation to do anything or speak to anyone. I was diagnosed with depression and given medication for that. I think quite a lot of that was about diabetes and the way I felt about diabetes but that was never addressed ever. I was given anti depressants and that as that. I don't necessarily blame anyone for that but there was a lot of missed opportunities before it got to the stage it did. 

I was constantly tired, thirsty, irritable and unwell, but putting on weight didn’t feel like an option. I got admitted to hospital for diabetic ketoacidosis (DKA) but I blamed it on my pump failing. Then, in 2015, I had three week-long stays for kidney infections, and another admission for DKA the following year. 

I went back to my diabetes clinic, but I didn’t want to be there. I really didn’t want to accept diabetes was in my life – I knew how hard it was going to be to get things back on track and I didn’t feel ready for it. So I just fell back into old habits.

In summer 2016, I started getting black marks in my eye and cloudy vision. I was completely in denial, but I went to A&E to get it checked out. It turned out that I had such extensive retinopathy in my left eye that the retina had almost completely detached and the one in my right eye was folded over and going the same way.

Five operations later, I’m registered as visually impaired. My periphery is really affected and I see black marks across my central vision, but I’m very, very lucky to have sight in my left eye. The surgeon said it’s one of the closest things she’s seen to a miracle in her working life.

The support of friends and family has been the biggest help, as well as deciding to look for the positives, of which there are many if you look hard enough. It’s a terrible whirlwind to start with, but it settles down and becomes the new normal very quickly. And life’s full of changes – this is just one of them. We treat it like a little kink in the road, rather than a brick wall. 

Wish you knew before?

It’s difficult because hindsight gives you a very different point of view. I guess it would have been good to know how Charlotte would deal with her diabetes and that her way of dealing with it would change as time went on.

She was a quiet, often shy girl when she was smaller and parents always worry how their kids will handle life's curve balls, but I often think her condition has given her a core of strength – but who knows, that might have been there all along. It has certainly given her a few opportunities which she otherwise would never have had – the chance to help in the Botswana project, in particular, is an opportunity of a lifetime.

I remember we had a diabetes nurse, Jo, who was so comforting to my mum. She taught her what to do and what not to do. She would visit the house to check up on me and became my mum’s friend. It was like I had someone with me at all times.

My mum made friends with other mums who had diabetic children, and when they got together, they’d speak about diabetes rather than what was going on in the soaps! My mum educated herself about the condition by trial and error.

My first diabetes-related setback came when I was training for my first amateur boxing match and I had my amateur licence rejected because of my diabetes. All my school friends were looking forward to coming and watching my first fight, and I was devastated. I was fit and healthy and didn’t feel like I had a special condition. People kept saying, ‘why can’t you box?’ and I had to keep repeating that it was because of my diabetes. I felt left out and alienated.

Today, I wouldn’t say I suffer from diabetes – it’s been a challenge to me, but I don’t suffer. It’s about educating myself and overcoming the challenges the condition presents. I don’t think of diabetes as an illness. It’s something you’ve got to control. You know what foods you should be eating and how much insulin you have to take to control your sugar levels. People make it out to be a terrible illness but it’s not – it’s down to you and how you control your symptoms.