At the age of 13, Charlotte Mitchell started her diabetes life, then in 2020 she celebrated her ‘diaversary’ having lived exactly half her life (at 26 years old at that point) with the condition. He she recalls how it all began.
“I hadn’t realised how ill I was, as it had been a bit of a gradual decline. No one in the family picked up on it. There’s six of us, mum and dad and I’m the eldest of four sisters. In the February of that year, I had briefly wondered whether I had diabetes. I’d been drinking a lot of water and had disrupted nights due to going to the toilet, which was unusual for me. Coincidentally, I’d been flicking through a magazine which had a page on diabetes and read the symptoms, the four Ts as they are now known: toilet, thirsty, tired, thinner. I went, tick, tick, tick, tick. I spoke to my mum who phoned the doctors, but he said he wasn’t concerned because at that time, we had a new fridge that could make ice and the doctor seemed to think maybe I was just drinking more due to the novelty of using it. I wasn’t even offered a blood test.
“Neither my mum nor I questioned further at that point. Then my period stopped, which was very odd. Fast forward to August and I was enjoying the summer holidays. Every year we went to my nanny and granddad’s caravan where we were spoiled with ice-creams on the beach and nice things like that, generally a wonderful time. I came home at the end of the visit and felt so tired slept all weekend.
“On the Wednesday we were due to fly to the US for a special trip to celebrate my mum’s 40th birthday, however both my parents knew something wasn’t right with me. On the Sunday, I’d gone to get some water and as I walked back upstairs, out of nowhere, I had a short argument with one of my sisters. That was out of character, but of even more concern was that I was gasping for breath. Dad took me to the walk-in centre that lunchtime and they did a blood test there and then. As my blood glues was 40mmol/L, I was told I needed to go to A&E immediately. As a 13-year-old, I was very scared. I’d never been in hospital before and everyone around me seemed to be panicking and no-one explained to me what was happening. I became incredibly anxious. It was a traumatic experience and the aftermath is something I’ve only started considering and processing in the last few years. Unfortunately, having spoken to many other wonderful type 1 diabetics, it seems my diagnosis experience is not that uncommon. Being told you have a chronic condition is, arguably, traumatic enough, so I have often considered what small changes could be made to prevent additional stress and anxiety for those who have been recently diagnosed.
“In all I spent three days in hospital, I was hooked up to three drips and – needless to say – the holiday was cancelled, sorry mum! A lovely DSN bought me a teddy bear so I could learn where to inject and talked to me about blood glucose monitoring and insulin dosing. She also gave me a blood test diary.
“I was very lucky to have my mum stay with me throughout my hospital stay. It’s made me think I should ask her how it was for her, I never have. My mum’s dad had Type 2 diabetes but Type 1 was a whole new ballgame and a massive learning curve. I left hospital with two metal insulin pens – a silver one and a green one – one each for the long-acting Lantus and short-acting Novo Rapid insulins. I was on and, I also had meter, test strips, a lancing device, ketone test strips that you could dip into your urine, and a book to write notes in.”
Shortly after her diagnosis, Mitchell invited her close friends round for a sort of ‘party’, so they could learn more about T1D and how they could help, if ever needed. She recalls, “It was my parents’ brilliant idea. We talked about the condition and explained that I need to test my blood sugar and inject insulin multiple times a day to stay alive. We also discussed what they should do if I were ever to collapse. I was keen to keep it really upbeat and positive, as I’m a glass half full kind of person, so we made sure everyone was learning, but having fun and a laugh at the same time.
“My best friends, Estelle and Laura, have been incredible – they’ve been with me since day one. We’ve been on lots of holidays and had many adventures together – and, although I’m able to look after myself, I know they would look after me if anything ever happened. I feel very fortunate to be surrounded by incredibly supportive friends and family. In fact, they even know when I’ve injected and will say, ‘I can smell your insulin’.”
Although the initial diagnosis was a shock and quite frightening, Mitchell’s journey has been positive so far. “My diabetes team has been fantastic from the start. Now I’m in the Adults’ Clinic we speak every six months, but I can reach out to my lovely DSN whenever needed. My HbA1c has always been relatively steady and we are all more than happy with the results. When I was diagnosed, my DSN said: ‘you control it, it doesn’t control you”. This has stayed with me ever since and has shaped my mind-set when it comes to my diabetes: it doesn’t stop me doing anything – my diabetes just comes with me.”
Mitchell attends the Stephanie Marks Diabetes Resource Centre at St Peter’s Hospital, Chertsey. She went from the children’s clinic direct to the Young Adults clinic in order to stay with the same consultant. “In paediatrics, my experience had been really positive, but I didn’t really bond with the consultant in the Young Adults clinic, so I asked to to be moved up to the adult clinic in order to stay with a consultant that knew me better. She is kind and understanding and recognises that we are human first and foremost, so I really look forward to attending clinic.”
Another change has been the matter of carb-counting. As she says, “When I was diagnosed in 2007, there had been no mention of carb counting. However, I attended did a DAFNE course in 2015, as I was keen to learn how I could gain better control. It was a brilliant course and I really enjoyed meeting other people with Type 1 diabetes.”
Since then, times have changed. “In the last year, since I turned 26,” says Mitchell, “I have entered a new chapter in my diabetes life. I discovered the online diabetes community – it was the first time I felt totally understood. Although I have always done what I needed to do in regards to managing my diabetes, I hadn’t considered how isolated I felt. I think that humour is the best therapy; it has been amazing to share experiences and laugh with fellow Type 1 diabetics.’
As with many of her generation, Mitchell is very aware of, and a user of, social media, but even she says, “I have my own personal social media accounts, but they are private and so I had been a bit worried about starting a diabetes-focused account. However, I decided to go for it and started an account called @TheGuiltyDiabetic on Instagram during the lockdown last summer. As a result, I’ve met so many incredible people who have T1D, as well as parents of children with the condition. It’s wonderful to be able to ask for advice and for us to share our experiences. I can have a laugh with them too, and know they are laughing with me – at things like knocking a sensor off when walking through a doorway. In fact, it’s because of these people that I now have a Libre as I saw them wearing their sensors so confidently. I was quite happy with my finger-pricking routine and never wanted anything ‘attached’ to me, yet here I am now with a FreeStyle Libre on my arm and I love it!”
In 2020, Mitchell volunteered to work for NHS 111 in order to help out in the pandemic, saying that she wanted to ‘give back’ and ‘help folk out’. “It’s different to anything else I’ve done before,” she says, “We had training to triage callers, which means we needed to know about not only the symptoms of Covid-19 but of other medical situations such as stroke, heart attack and even hypos – that was an odd session. The trainer was very good, allowing me to comment on the training as – unfortunately – I had first-hand experience.”
Mitchell is still using NovoRapid for her short-acting/bolus insulin. After using Lantus and then Levemir for several years, she recently started using Tresiba for my long-acting/bolus insulin. She says, “I find that it lasts for more than 24 hours in my system, which is brilliant as it’s given me a reliable base level and, overall, improved control. A big change for me in the past year has been using the FreeStyle Libre sensor in order to more closely monitor my blood sugar levels. I still finger-prick if the sensor is having technical difficulties, or if I want to double check the reading or I accidentally knock it off. However, I am really enjoying having a greater insight as to my blood glucose levels with access to graphs to inform me about the data.”
Technology is changing at a faster rate now than ever before. So, having not wanted to be attached to anything, then taking ‘baby steps’ onto FreeStyle Libre, what else might be in store for her? “It is incredible how far technology, equipment and research have come since I was diagnosed 13 years ago,” says Mitchell. “I started using a Libre last year and it has changed my diabetes management for the better; I am able to spot patterns in my readings and make changes accordingly to improve my control. I am so happy to have lowered my HbA1c slightly too since using it. My consultant is always keen to discuss pumps with me. I’m open-minded about it at the moment. I enjoy learning about the latest equipment, but I am quite happy with my multiple daily injection regime at the moment. Never say never though, who knows what the future holds?”