Claim OwnershipLiving with Long covid
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© 2025 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.
107 Episodes
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Send us a text On this episode of the podcast I am fortunate to be joined by Karen, Emma and Oonagh to discuss their campaign group #ThereForME. They came together to form #ThereForME following personal experiences of either living with ME, Long Covid and/or caring for partners with severe ME. They are a small group who are making a huge impact. We talk about their roles within the campaign group, how they came together and what they have done in such a short space of time. ...
Send us a text The 15th March 2025 marks International long covid awareness day, this year is also the five year milestone of the pandemic. For many it will also be reaching their personal 5th year of living with long covid. Kerry and I wanted to mark this milestone with a very organic chat about where we are now, what we would like people to know and understand. We reflect on our personal journey's, the millions of people (of all ages) whose lives have been affected and changed. The lo...
Send us a text I am so pleased to be back recording the podcast, thank you for your continued support. I am pleased to have returning guest Patrick Ussher join me on this episode. Patrick Ussher has had ME/CFS for 7 years. He has written a book ‘Understanding ME/CFS & Strategies for Healing’. which is now available as an audible, ebook or paperback copy. Click on the link below to find out more. In the book he communicates some of the latest, most exciting ME/CFS researc...
Send us a text In this episode of the podcast, Robin McNelis joins me again for part 2 of a series where we aim to cover a variety of topics which will support pacing/micropacing and much more. In this episode we discuss the exertion types and what uses energy, we recap on what pacing is and why it is important when you live with a chronic condition such as ME and long covid. Robin discusses the principles of pacing and the varying forms of pacing, we discuss listening to your body and the c...
Send us a text In this episode I have returning guests; Patrick Ussher a person living with ME/CFS for the last 6 years, he has a Youtube channel "Understanding ME/CFS" in which he talks about research into ME/CFS and Long Covid in an accessible way. He has written a medical hypothesis on the potential cause of excessive thirst following being misdiagnosed with psychogenic water drinking. I also have Peter Deen, whom is the founder of a start up company Streasure4health, Streasure4Health is d...
Send us a text In this episode of the podcast I have guests Patrick Ussher a person living with ME/CFS for the last 6 years, he has a Youtube channel "Understanding ME/CFS" in which he talks about research into ME/CFS and Long Covid in an accessible way. He has written a medical hypothesis on the potential cause of excessive thirst following being misdiagnosed with psychogenic water drinking. I also have Peter Deen, whom is the founder of a start up company Streasure4health, Streasure4Health ...
Send us a text This is part 1 of a series with Robin McNelis, Clinical Specialist Cardiorespiratory physiotherapist. In this episode we discuss pacing and micro pacing, how it can be challenging to understand and to navigate. Robin explains the principles of pacing, identifying triggers, the lactate threshold and how to break down tasks and why this is important. Robin shares his own journey and how he identified his activity triggers and applied micro pacing. He explains how certain tasks c...
Send us a text This 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 s...
Send us a text Following 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 durin...
Send us a text In 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 exp...
Send us a text In 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 thi...
Send us a text In 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...
Send us a text In 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,...
Send us a text On 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 ...
Send us a text In 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 ...
Send us a text In 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 a...
Send us a text As 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 wit...
Send us a text In 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 co...
Send us a text In 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 text Over 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...
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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.