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© 2024 Living with Long covid
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This podcast aims to raise awareness of long covid, provide a platform of support, education and the lived experience.My name is Julie, I am a registered nurse in the UK. I became unwell with Covid in May 2020 while working on the front line, during the first wave of the pandemic. Subsequently I live with long covid and POTS ( postural orthostatic tachycardia syndrome). I would like to share my journey and lived experience, the symptoms and how each impacts daily life. I aim to not only consider the physical issues but also the impact this has had mentally and emotionally. It is reported over 2 million people in the UK and an estimated 65 million worldwide, live with long covid. This is huge, and affects every area of a persons life, their family, friendships and work life. Join me and some great guests and let’s Learn, advocate and continue this journey together.
100 Episodes
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Send us a textThis is part 3 of the short series of podcasts with the wonderful Rachel Jessey from Benourished. Rachel has so much knowledge and experience which is why we have discussed several interrelated topics over the 3 podcasts. In this episode we focus on disrupted sleep, the process of natural melatonin and cortisol to support and regulate the sleep pattern and the wake pattern in correlation with the circadian rhythm. We talk about natural light vs artificial light to support ...
Send us a textFollowing on from the last episode of the podcast, as promised this is part 2 with Rachel Jessey from Benourised. We continue and expand on the short conversation we had at the end of the last episode on faecal implant, Rachel has so much knowledge and this is a really interesting topic. We also talk about the circadian rhythm and how we can reset this rhythm which supports the natural absorption of vitamin D, sleep, digestion and more. I explain what I put into practice during ...
Send us a textIn this episode of the podcast I talk with a fantastic returning guest Rachel Jessey.We talk about all things gut related and the microbiome, Rachel explains how these can be effected by the Circadian rhythm and also how and what we can do to help support a "healthy gut". Listen to Rachel talk about a study that supports the thought process that the circadian rhythm is an important factor for gut health. Rachel explains how important the cortisol is within this rhythm, we expand...
Send us a textIn this episode of the podcast I am grateful to speak with Gary and Karen, they talk with me openly about their acute and Long Covid journey as a married couple. We discuss how long covid impacts life and "the person we once was", Karen reads an impacting piece she wrote through a creative writing group titled "The goldfish bowl". I am sure this will resonate with many. Gary and Karen have been involved with fund raising and their local community pre pandemic and although things...
Send us a textIn this episode of the podcast, I have returning guest Rachel Hext. Rachel and I talk ahead of the UK general election, we discuss the floors, failings and ongoing issues around the pandemic, clean air and PPE. Rachel talks about her advocacy work including being part of media interviews and Panorama, and specifically Keyworker petition. She recalls the groups day at number 10 delivering their petition, the impact of this and support from certain MP's.We reflect ahead of th...
Send us a textIn this episode of the podcast, I talk about reaching the 4 year mark of living with Long Covid. I don't like to acknowledge this as an anniversary but I wanted to acknowledge the time that has passed, and what I have learnt along the way. It is strange how 4 years is such a long time, and in one way it has felt like the longest time ever! and the other has me questioning 'where have those years gone?' This is a reflection of the last 4 years and I wanted to acknowledge that, an...
Send us a textOn this episode of the podcast I chat to freelance writer and editor A. K. Davidson. We talk about her book; Poetry for life and other chronic conditions, which is due out on the 6th June, the link to pre order the book can be found below. Anna talks about her journey and experiences with acute and Long Covid, and how she now feels recovered, in a slower more thoughtful pace of life. We discuss how Anna put pen to paper to create these short and thoughtful poems, she admits this...
Send us a textIn this episode of the podcast I talk with Jess, the founder of the Turnto app, and Ally from Turnto Long Covid. Jess shares her inspiration for the Turnto app and her personal journey with her son who has a rare form of cerebral palsy, and the challenges navigating health care services and trying to find treatment and support (and what a journey!!). Jess explains how this has led to the development of the Turnto app. We discuss the reason for the app, the content an...
Send us a textIn today's episode of the podcast I talk with my son Alexander. Alexander and I were talking some time ago, and he explained to me this concept of "safe space" which he had been thinking about. He explained he was developing and applying this to everyday life, but specifically to the salon he works in. He currently works at Rebecca Dickinson's salon in Bawtry; RD hair, body and soul; Alexander talks about how he wants to make sure the salon he works in is accessible to all...
Send us a textAs requested by those of you who follow me on social media, in this episode of the podcast I am sharing my experience so far, of using a fitted vagus nerve stimulator (VNS). I have aimed to answer all of the questions you guys asked me. I have given some information on the VNS, how it is fitted, what it does and how I am finding it at this point, including any symptom improvement. I touch upon alternatives for stimulating the vagus nerve and what the suggested benefits are with ...
Send us a textIn this episode of the podcast I talk with Kevin Digby and Rachel Hext following the High court hearing on the 6th March 2024. Kevin is a partner at GA Solicitors and is representing nearly 70 healthcare workers with Long Covid taking the NHS and other employers to court. Many healthcare workers are living with the disabling consequences of Long Covid after working on the frontline, with inadequate, incorrect or no PPE (personal protective equipment). We discuss the day in court...
Send us a textIn this episode of the podcast, I am grateful to have two fantastic guests join me, Professor Louise Cummings is a professor at the Hong Kong polytechnic university, she conducts research on language and communication disorders and is the author and editor of over 20 books in this area. Kerry Davies is a returning guest, a fellow advocate and nurse who lives with Long Covid and the language and communication disorders associated. We discuss language and communications disorders,...
Send us a textOver the last couple of weeks you may have seen in the news, Dr Fearnley and the group she co-founded Long Covid Doctors for action; If not, these are a group of doctors who have come together to take action against the NHS negligent work place exposure. They are being represented by Bond Turner. Today, I am fortunate to be able to talk with Kevin Digby, a partner at GA Solicitors, just to make clear this is a completely separate legal firm to Bond Turner. However Kevin ex...
Send us a textOn this episode of the podcast I discuss invisible disability, and how a Ted talk I recently had sent to my inbox, had such an impact on me. I watched the Ted talk and could relate to Dr Amrita Sen Mutherjee experience of living with her own invisible disability. I resonated with her experience of having her condition diagnosed, and the subsequent impact to her life, family life and career. UK Parliament estimate 70 to 80% of disability is invisible, which made me co...
Send us a textHappy new year to everyone, this is the first podcast of 2024 and I will be honest it has no structure at all, but then that was the point!I wanted to talk today about how not everything is or can be structured, how the general consensus is "new year new me", but that is not always realistic and just becomes an added pressure and expectation. I explain how I have reflected on many things recently, I look at social media like anyone else, and see the wonderful experiences an...
Send us a textIt is Christmas Eve 2023 and on this episode of the podcast I talk about creating healthy boundaries. What are healthy boundaries? how can we set and manage healthy boundaries in our lives?I discuss how important healthy boundaries are to support our health and wellbeing. How setting boundaries support open, honest and healthy relationships. I appreciate setting boundaries can be a challenge, we have expectations of ourselves and people have expectations of us! ...
Send us a textOn this episode of the podcast I chat with Jo Bellingham, charity manager for POTS UK. Jo and I discuss the POTS UK charity and Jo explains what the charity does and how it supports people who are living with POTS. We discuss the treatment options for POTS which includes medications and lifestyle changes. POTS UK have a website which is full of evidenced based and supportive information, you will find useful links and information on any upcoming events from POTS UK. Jo also talk...
Send us a textOn this podcast I talk about anxiety and depression, the gaslighting, mental health and the autonomic nervous system. In this episode I discuss the importance of feeling able to talk about anxiety and depression and how this has an effect on our lives. I discuss how important mental health is, how it should not be made taboo or minimised. I talk about the autonomic nervous system and dysregulation of the sympathetic and parasympathetic nervous system . I explain ...
Send us a textOn this episode of the podcast I am talking with Jo Thomas personalised coach. Jo and I talk about holistic health and wellbeing, the importance of the medical model interlinked with emotional and mental health support along with therapies to achieve personal equilibrium. Jo explains how the autonomic nervous system is effected and how this impacts the body and fatigue. Jo uses her personal experiences, being a nurse who has experienced burn out as well as having her own l...
Send us a textThis is episode 80! I am so pleased to have my fellow LCNMUK (Long Covid nurses and midwives UK) colleague and friend Kerry join me in this special episode. I am sorry the break I took turned into a longer one then I had intended, but as I am sure you understand that is the reality of living with Long Covid or any long term condition and elements of general life taking over. I hope you guys are looking forward to some more great guests in the coming weeks and months. I app...
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Thank you for a great podcast, Julie, and thank you Asad for continuing to be a voice of reason, hope and comfort.
Yes long covid can go into remission it happens to me frequently.
Hi Julie! I've only recently started following you on Instagram and I am now going back to the beginning of your podcast and listening to all episodes! love love love it thank you so much for taking the time to help your fellow long covid sufferers. I am so grateful and wish you all the best with your recovery and return to work.