Living with Long covid
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.
Episodes
104 episodes
Episode 2 with Robin McNelis; Clinical specialist cardiorespiratory physiotherapist, the principles of pacing and understanding energy use, PEM/PESE and the lactate threshold
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 e...
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Season 1
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Episode 103
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42:22
Returning guests; Patrick Ussher and Peter Deen; The myth of primary polydipsia, challenging medical gaslighting with science
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 w...
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Season 1
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Episode 102
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41:32
Patrick Ussher and Peter Deen; Streasure4Health and metabolic stress
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 h...
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Season 1
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Episode 101
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40:26
Episode 1 with Robin McNelis; Clinical specialist cardiorespiratory physiotherapist, understanding pacing micro pacing and why it is Important
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 ...
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41:26
Part 3 with returning guest Rachel Jessey - Artificial light, sunrise, sunset, sleep and much more
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...
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40:05
Part 2 with returning guest Rachel Jessey - faecal implant, vitamins and the gut microbiome
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 knowl...
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Season 1
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Episode 98
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40:35
Returning guest Rachel Jessey - lets talk about the gut!
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 ...
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39:55
Guests Gary and Karen, discuss their personal journey and setting up a local Long Covid support group
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 rea...
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Season 1
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Episode 96
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39:09
The pandemic, the government and the general election
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 a...
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39:04
Four years later!
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. ...
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Season 1
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Episode 94
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29:11
Guest; A. K. Davidson - Poetry for life and other chronic conditions
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. ...
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Season 1
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Episode 93
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37:58
Guests; Jess and Ally talk about the Turnto app for Cerebral Palsy and the upcoming app for - Long Covid and MECFS
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 pals...
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Season 1
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Episode 92
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37:54
Alexander Taylor - Creating a safe space
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&nb...
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Season 1
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Episode 91
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43:03
As requested....My experience on using a fitted Vagus nerve stimulator!
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 ...
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Season 1
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Episode 90
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27:40
NHS court hearing update with Kevin Digby and Rachel Hext
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 a...
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Season 1
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Episode 89
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40:05
Professor Louise Cummings and Kerry Davies; research, speech, language and cognitive communication disorders in Long Covid
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 autho...
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Season 1
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Episode 88
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38:42
Q&A with Kevin Digby GA Solicitors
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...
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Season 1
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Episode 87
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35:12
Invisible? but you can see and hear me!
On 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 wit...
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Season 1
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Episode 86
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21:49
Starting a new year 2024; not everything is perfect or planned
Happy 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...
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Season 1
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Episode 85
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29:39
Keeping healthy boundaries
It 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...
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Season 1
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Episode 84
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28:24
Jo Bullingham joins me from POTS UK
On 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 ...
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38:44
The autonomic nervous system, gaslighting and feeling able to talk about anxiety and depression
On 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 ...
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Season 1
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Episode 82
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27:57
Jo Thomas personalised coach talks about Long term conditions, fatigue and her own experience of POTS
On 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 ther...
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Episode 81
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38:33
Special guest Kerry Davies interviews me!
This 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 ...
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Episode 80
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39:47