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- Embracing Life with LADA: My Journey from Misdiagnosis to Advocacy - Lin May
Hello and welcome to 'Pumptastic Scot'. We have another guest blogger today, Lin May, who is an author and diabetes advocate, dedicated to raising awareness about LADA and supporting those on their journey with Diabetes. To learn more about her work visit https://lada-diabetes.com/ and https://insulinpumplife.com/, where she blogs. Read more to learn more about her story! Until next time, Alyssa x In 2013, my life took an unexpected turn when I was diagnosed with diabetes at the age of 30. The diagnosis itself was not straightforward; initially, I was misidentified as having Type 2 diabetes and prescribed Metformin, which worked at first, as I was in a honeymoon period, but over time that stopped working and other Type 2 diabetes medications also failed to work. This misdiagnosis was the beginning of my journey into the complex world of LADA (Latent Autoimmune Diabetes in Adults) – a slow-progressing form of diabetes, often considered a subtype of Type 1. Before this personal encounter, my understanding of diabetes was limited. Type 2 diabetes was somewhat familiar, thanks to a family member who had it. However, Type 1 diabetes, with its essential insulin treatments and associated costs, was a distant concept. The revelation that insulin pumps were not invasive devices, but rather external, precision tools for insulin management, was eye-opening not just for me, but for my family as well. The years following my diagnosis were a period of gradual acceptance and learning. Deciding to use an insulin pump marked a pivotal moment in my journey, profoundly improving my quality of life. The pump allowed for more flexibility in my diet and eliminated the need for multiple daily injections. It was not just a medical choice, but a step towards normalcy. My experiences led me to dive deeper into understanding diabetes. I explored the history of the disease, the evolution of insulin, and the intricacies of body chemistry. This quest for knowledge culminated in my book, "Success with LADA Diabetes: Achieving Optimal Health with Diet, Exercise, and Insulin". My aim was to guide others who might be struggling, particularly those who, like me, were misdiagnosed. Misdiagnosis can lead to a barrage of negative emotions – guilt, shame, frustration. It's crucial to understand that LADA is an autoimmune condition, where the pancreas is compromised, making insulin therapy essential. The misconception that lifestyle changes alone can control such a condition can lead to harmful self-blame. My advocacy now focuses on promoting correct diagnosis and understanding the nuances of LADA and Type 1 diabetes. One of the most empowering aspects of my journey has been discovering the supportive community surrounding Type 1 diabetes. Technological advancements, like hybrid closed-loop insulin pumps, have revolutionized treatment, offering new hope and ease of management. Now I use the Medtronic Minimed 780G Insulin Pump which has advanced features like auto corrections, making my life easier. My story underscores the importance of dispelling myths around diabetes. Type 1 diabetes, historically labeled juvenile diabetes, can indeed manifest in adulthood. It's imperative that we foster awareness, encourage proper testing, and support each other in seeking accurate diagnoses and effective treatments. As I continue my advocacy, my message is one of hope and resilience. Living with LADA or Type 1 diabetes presents challenges, but with the right knowledge, support, and technology, it's entirely possible to lead a fulfilling, healthy life. Let's break the stigma and embrace the journey together.
- ‘Diabetes Tech Can’t Wait’ Campaign - Scotland
‘Everyone living with diabetes must have fair and equal access to the diabetes tech they’re eligible for’ In Scotland, in 2022, new guidelines led to a £14.6 million Scottish Government funding to increase access to hybrid closed loop technologies across Scotland. A campaign named “Diabetes Tech Can’t Wait” was started by Diabetes Scotland, with the aim of ensuring that the funding allocated to this vital diabetes technology is being put into action. The aim was that no matter where you live in Scotland, you can access the technology that will help you take control of your diabetes and live a happier and healthier life. Diabetes technology shouldn’t be a luxury for a few, it is vital for some individuals, and the aim of the campaign is to show decision-makers why everyone living with diabetes must have fair and equal access to the life-changing tech they’re eligible for and ensure that this funding that has already been allocated reaches everyone that needs it. The foundation of the campaign has been individuals living with diabetes sharing their lived-experience stories. This could be someone who has already had access to tech sharing how it has impacted their life, or someone who hasn’t been able to access it in their area. My story can be found here - https://www.diabetes.org.uk/tech-cant-wait/your-stories/alyssa, and you can see more of these lived-experience stories shared as part of the campaign here, as each and every story shared are extremely powerful - https://www.diabetes.org.uk/tech-cant-wait/your-stories. Diabetes Scotland launched a tool as part of the “Diabetes Tech Can’t Wait” campaign called the ‘Postcode Lookup’. In this tool, you can put in your postcode and find out the data on diabetes technology in your area in Scotland. The reasoning behind having this tool is that access to diabetes technology isn’t equal across all areas of Scotland and can be described as a ‘postcode lottery’, meaning that some postcodes are luckier and have better access. Once you put in your postcode it will show you the data on your area, and from there it gives you the option to sent an email to your local MSP (member of Scottish Parliament) to further campaign for fair and equal access to diabetes technology. Another aspect of the campaign was discussing the campaign in the Scottish Parliament. In Scotland, we have something called the ‘Diabetes Cross Party Group (CPG)’ which happens in the Scottish Parliament, and is co-chaired by MSP’s, one of which has type 1 diabetes themselves (Emma Harper MSP). Each CPG meeting has a different topic, and the last meeting on 21st June had a focus on access to diabetes technology to further campaign. An announcement was made at the CPG on 21st June that as a result of the ‘Diabetes Tech Can’t Wait’ campaign, a further £350,000 funding was allocated to speed up delivery of the previous £14.6 million allocated to implementing hybrid closed loop systems, and this funding will fund staff and training resources to ensure that individuals living with type 1 diabetes can access the diabetes technology, which is amazing! The crux of the campaign has been a collective effort of individuals with diabetes/their caregivers who have been tirelessly campaigning throughout this year. The ‘Tech Collective’, as they are named, have been meeting monthly, sharing their stories, contacting their MSPs and sharing the campaign with social media/local news, and they have been a vital part of the campaign. Today in the Scottish Parliament, there will be a reception for the ‘Tech Collective’ members, along with Members of Scottish Parliament and other important decision makers. The ‘Diabetes Tech Can’t Wait’ campaign/Diabetes Scotland will be launching its report discussing the importance of the campaign. It has been a pleasure to be a part of the ‘Diabetes Tech Can’t Wait’ campaign. In my opinion, access to diabetes technology (for those who want it and need it) falls under the human right of ‘right to adequate healthcare’, as it has been essential to my own diabetes journey, and having fair and equal access to this will be life changing to diabetes care in Scotland. I will share the ‘Diabetes Tech Can’t Wait’ report when it launches! Until next time, Alyssa x
- Michelle - Competing in Strong Woman whilst living with Type 1 Diabetes
Hello and welcome to 'Pumptastic Scot'! We have a guest blogger today, Michelle, who discusses her journey of training and competing in Strong Woman, and how she juggled training whilst living with type 1 diabetes. Until next time, Alyssa x Hello everyone! What an absolute pleasure it is to be writing a guest blog for Alyssa (the Pumptastic Scot). I met Alyssa back in July 2023 when I volunteered at my first Diabetes UK Summer Camp (FYI, if you are a type 1 diabetic and looking to give back to the diabetes community, then I strongly recommend this experience – it was life changing!) Me and Alyssa only had a few interactions at the camp (mainly team building / training sessions and conversations relating to our matching Fabletics leggings or her super cool Dexcom stickers), as we were in different groups, but I loved her warm and friendly energy – I’m hoping that I get to work with her in the future as I know we just click. So why did Alyssa ask me to guest blog? Well – a little fun fact about me is that I like to dabble in a bit of strong(wo)man training and competitions. That’s right, you read that currently. So, for all of those Eddie Hall, Brian Shaw, Hafþór Björnsson and Stoltman Brothers fans, you will know exactly what sport I am referring to. And for those of you who don’t, basically in a nutshell, I like to lift, carry, push, pull and throw objects that are maybe a little less mainstream to say your standard barbell or dumbbells. I’m talking cars, giant cement atlas stones, people, tyres, logs - the lot. I thought I would include some picture just for context, especially if you are a visual person like me! Axle floor to overhead reps - 50kg Tyre flip - 300kg I've always enjoyed exercise. Throughout my life, I've enjoyed spin and Les Mills classes - as well as dabbled in a bit of jogging and swimming too. But like many of us, I lost my motivation throughout lockdown which took its toll on my diabetes management, as well as my mental health and wellbeing. At the end of August 2020, I decided that I needed to regain control of the situation - especially with covid still lingering around and being vulnerable, so I joined a new gym! However, this gym was different to any gym I had been to previously. It had equipment that I had only seen on 'The World's Strongest Man' (like atlas stones, a yoke, logs and sandbags etc). After a few weeks of kettle bell classes, I won a free PT session in a prize draw and decided to give the strong(wo)man equipment a try. To say I fell in love with it is an understatement! Within a very short period of time, I booked weekly PT sessions and signed up for my first ‘Team’ competition which led to me competing in a further 8 competitions across the country. Although I love this type of training, it hasn't been an easy journey for me. I have found managing my blood sugars when exercising quite difficult at times and it has taken a lot of trial and error to work out what my body needs (whether that be insulin before resistance training or some carbs to prevent a hypo before more cardiovascular exercise or higher reps lower weight work). I often find that competition days are the worst – despite taking extra insulin, my blood sugars spike up to the 20’s (darn you adrenaline) – and then as soon as the competition is over, they regulate again and are back in range. And if I’m honest, I still haven’t quite cracked it. However, most of the work has gone into the mental strength and resilience of making sure that I have the mindset where my blood sugar levels don't define me - it's just data. Data that tells me that I need to adjust my carbs, dose amounts or timings. Managing to remove the emotional response to my blood sugars has been a game changer for me and allows me to fully immerse myself (as much as my diabetes will allow) into something that I enjoy. I guess the takeaway for this blog is to remind you all that diabetes doesn’t define you. Yes, it’s a full time job and can be so frustrating at times – but do the best that you can to manage it and if the numbers don’t reflect all of your hard work then you know what? That’s okay. There are so many factors which influence those numbers and as I have said before – they do not define you. So the takeaway is that these numbers are data – data that helps you to move forward and adapt (something we type 1 diabetics are already very good at!) If you have made it to the end of the blog then thank you so much for taking the time to read my guest blog and of course, thank you to Alyssa for having me 😊
- Aisling Pigott – Type 1 Diabetes and Disordered Eating Research
Earlier this year, I saw a poster for research being completed on type 1 diabetes and disordered eating, and quickly signed up to take part, as it is a topic I am passionate about and have personal experience of. I quickly realised that the research was being conducted by Aisling Pigott, someone I have been a mutual on social media for a few years. Below, Aisling discusses her career and PhD research, the rationale behind the research and talks about how to get involved in the research! “As a Paediatric Diabetes Dietitian, I absolutely love working with children, young people and their families to help support them to live life to the fullest, nourish their bodies and self-manage their diabetes. When I started in this speciality in 2015, one of the big challenges I faced was supporting carbohydrate counting from diagnosis, which is best practice in Type 1 Diabetes, and something I’ve been passionate about implementing in my service. However, I was struck by the number of young people who had complex relationship with food, body, and insulin omission. I started to explore eating disorder access for these young people and found that it was overwhelmingly difficult to access services for these young people. There is lots of exciting work being done across Wales now to improve collaborative working across eating disorder teams and diabetes. I wanted to find out a bit more about how we can protect children and young people with Type 1 Diabetes from developing complex relationships with food and body and was really lucky to receive some funding from RCBC Wales to start my PHD. The first phase of my research is to explore what the lived experience of Type 1 Diabetes and Disordered Eating can add to our current understanding. My early literature review found lots of interesting associations between Type 1 Diabetes and Disordered eating, but much of the literature in this area is expert opinion. There was not research available that explored the voices of the real experts- people with Type 1 Diabetes and disordered eating. I’ve absolutely loved hearing from the real experts in this area, people with Type 1 Diabetes and a history of disordered eating. I truly believe that we (as HCP’s) have so much to learn from their voice, and expert opinion). My early observations of the data are that future interventions may need to consider a parenting and young person intervention – as well as some support around weight stigma for paediatric diabetes health care professionals. I have recruited and interviewed 11 participants so far, and unfortunately recruitment has slowed down.” The link to sign up as a participant to help Aisling with this all-important research project is - https://cardiffmet.eu.qualtrics.com/jfe/form/SV_00bQY3jnRpEeFg2. There is eligibility criteria for the research, which is: individuals who received diabetes care in the United Kingdom during childhood and have experienced disordered eating. You are ineligible to take part is you have experienced any of the following in the past 2 years: Intense fear of gaining weight, or body image concerns or fear of insulin promoting weight gain Recurrent restriction of insulin to prevent weight gain. Insulin restriction, eating or compensatory behaviours that cause harm to health, diabetes distress or impairment on daily function) Please consider helping Aisling with her PhD research if you meet the criteria, research studies like this are pivotal to future diabetes care, particularly in this topic where care needs to be increased! Until next time, Alyssa x p.s. If you would like to be a guest blogger, please don't hesitate to get in touch via my social media!
- Successfully navigating life with Type 1 Diabetes
Hello and welcome to the re-launch of Pumptastic Scot! My name is Alyssa Faulkner, I am from Scotland, and I have been using an insulin pump since 2014 for my type 1 diabetes management. I am very happy to have you here! Going forward, ‘Pumptastic Scot’ will be a hub of diabetes resources, education, and lived-experience stories, with a sprinkle of personal anecdotes. With blog posts coming at least once a month, there will be a wide variety of guest bloggers, including from professionals working within diabetes and from individuals living with diabetes, there will be a range of diabetes content. Make sure you stay tuned and follow along, and if your interested in having your voice included in ‘Pumptastic Scot’, please let me know! Where have I been? I haven’t updated the ‘Pumptastic Scot’ blog since 2019, and there are several reasons for this. I was struggling with the management of my diabetes, and I was seeing other individuals with type 1 having seemingly perfect control, which didn’t help with the mental toll that comes living with type 1 diabetes. I found that discussing constantly discussing type 1 diabetes, as well as living with it 24/7, wasn’t helping me at all, and at times made me feel more burnt out with diabetes, and so I realised that I needed to learn and accept diabetes offline before I brought it back online. I realised that no one could change my life but me, and if I wanted to focus on my health and diabetes management I was the only one who could change things, but I needed some introspection and time away from the internet. Comparing myself to other people Everyone with diabetes responds in a completely different way to every diabetes treatment, everyone has different insulin requirements, different insulin sensitivities, different lives, and so what may work for me may not work for someone else. I was heavily involved in a wonderful community of individuals living with type 1 diabetes who were sharing their lives online, The problem with being online and observing snippets of other individuals with diabetes lives is that you only see select moments that others choose to share, but I found myself comparing myself to those small select moments. I often found myself lacking when I did this, wondering why things were working out for another person but not me. Rationally I knew that I didn’t share everything and so others also probably weren’t sharing everything, however it was hard being in that online space, and I did find my mindset turning really toxic. My takeaway and things I need to remember: Social media only shows a snapshot of another person’s diabetes management, and trying to compare is not realistic or healthy. Diabetes management is a highly individual thing, and what works for someone else may not work for you. For the past few years, throughout the pandemic, and through starting my career, I have been focusing on how to better myself, and learning how to successfully navigate life whilst also having type 1 diabetes. I focused on ensuring that I could live the life I wanted to live, and have been managing my diabetes according to that, rather than letting diabetes dictate what I could and couldn’t do. I am finally in a place that I feel I can fully rejoin the diabetes online community, but I know now that I need to set boundaries in place for my own mental wellbeing. I know that it is okay if I don’t share every aspect of my life on social media, and I know that I can’t compare myself to anyone else, as my diabetes is highly unique, as is everyone else’s. Until next time, Alyssa x