Living with Long covid

Send us a textOn 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. The group talk me through the campaign #FundThePlan which is raising awareness on a new delivery plan for ME that has been a work in progress for around 3 years for ME, looking at research, attitude and education and living with ME. The government has stated there are no plans to fund the plan, which will have a continuing impact around the lack of resources for ME. The  #FundThePlan is something everyone can get involved with, by creating a short video asking Ashley Dalton and Wes Streeting to make a difference and  #FundThePlan. If you are living with the condition (and are able), caring for someone or a supporter/advocate please take the time to create your #FundThePlan video. The templates and information can be found across the #ThereForME social media platforms the links  can be found below, and if you aren't already please support and follow the group on social media. To find out more have a listen to this episode, thank you for listening to the podcast, please share with anyone you feel it may help. As always take care #onedayatatime My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textThe 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 losses and the gains in the form of a large and supportive community, we discuss how in the darkness and uncertainty the ME community reached out to let us know we are not alone. We discuss lack of understanding, the continued challenges however we also wanted to celebrate the amazing professors, scientists, consultants, doctors, advocates, charities and support groups, and our families and friends that are by our sides. We discuss the impact chronic conditions have on those we love. We celebrate and thank everyone who stands in solidarity and while this is not an anniversary or something any of us wanted, it is an opportunity to shout louder, have our voices heard and make sure none of us feel alone. #solidarity #onedayatatime My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textI 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 research as well as strategies he has used to improve his quality of life. The book is laid out with a broad audience in mind, inclusive of those living with ME/CFS and Long covid, their families and/or carers and medical professionals. It contains links to the relevant research and chapter summaries which are really helpful. In this episode of the podcast we discuss his book and go into more detail around the section of the book covering (PEM) post exertional malaise, and the research findings of Professor Klaus Wirth and Professor Carmen Scheibenbogen. This is an interesting conversation with light bulb moments. We discuss how PEM is a nemesis for so many living with these conditions, and what the research findings suggest is happening at cellular level. We touch on pacing in the absence of medical treatment and  how important, although extremely challenging pacing is to avoid PEM. Patrick, talks about mitodicure, a potential medication to treat patients with post exertional malaise. This is in its infancy, in terms of requiring funding and clinical trials, more information is available via the link in the show notes. To find out more about this and lots more have a listen to this episode. Links from this episode: More about Patrick: https://www.patrickussher.comYouTube channel: https://www.youtube.com/@me-cfs-strategiesforhealing To see the main options for buying Patrick's book in ebook, paperback or audiobook:  https://books2read.com/u/bOk9J0Wirth's ME/CFS pill ‘Mitodicure': https://www.mitodicure.comThe first Wirth and Scheibenbogen paper on a ‘Unifying Hypothesis for ME/CFS': My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textIn 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 challenges of this with PEM/PESE. Robin explains how monitoring your HR/HRV is important, what is available to monitor this data and how to understand what level to set your alerts at to remain within the anaerobic threshold. We discuss the lactate threshold and Robin explains the zones of this threshold and how important it is to remain within the lactate threshold, especially those with PEM. Robin advises how the lactate threshold can be tested at home, and clinical testing. We additionally discuss how those with Orthostatic intolerance, PoTs can find it challenging to maintain their heart rate within their threshold due to heart rate spikes. Robin gives some great advice on how to support this and lots of other amazing information and advice throughout this podcast, so grab a cuppa and have a listen. As always thank you for listening to the podcast, take care #onedayatatimeLinks from today's episodeWebsite:https://www.robinthephysio.co.ukhttps://twitter.com/robinthephysiohttps://www.instagram.com/robinthephysio My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textIn 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 developing an objective diagnosis and scalable diagnostic sensor for LongCovid and ME/CFS, which are rooted in their underlying mechanisms. It has developed an innovative approach to clinically map metabolic stress for the first time. Following on from the last podcast we discuss Patrick's personal journey with ME/CFS, how he had excessive thirst and would drink up to 20 litres of fluid per day. Patrick explains how this led to medical gaslighting following a hospital admission and subsequently his journey to his book "The myth of primary polydipsia" which is free to download, press on the link below for your copy. Peter subsequently contacted Patrick and they have collaborated since. Listen to this episode of the podcast to find out more, and check out the links below. As always thank you for listening to the podcast, take care #onedayatatime. Links from this episode: More information on Patrick Ussher:https://www.patrickussher.com Patrick Youtube channel; Understanding ME/CFS:https://www.youtube.com/channel/UC8p46sk36RDASjeGHhF9G1A/Free book to download - The Myth of primary Polydipsia by Patrick Ussher:https://www.themythofprimary.polydipsia.comBook - Waterlogged by Tim Noakes: https://g.co/kgs/kQ7uQuPMedow study on Oral Rehydration Solution in POTS as effective as saline IV: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6815702/Downregulation of Renin-Angiotensin-Aldosterone System (salt retention hormonal network) in ME/CFS: https://pubmed.ncMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textIn 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 is developing an objective diagnosis and scalable diagnostic sensor for LongCovid and ME/CFS, which are rooted in their underlying mechanisms. It has developed an innovative approach to clinically map metabolic stress for the first time. We discuss how Patrick and Peter met and how this led to their collaborations. We will delve in deeper and discuss Patricks personal journey, experience of medical gaslighting and the eventual publication of his book, The myth of primary polydipsia on a future episode. We talk in this episode about metabolic stress, research, future projects and diagnostic tools from Streasure4health. Peter explains the science behind metabolic stress and how it affects the physical and cognitive function. He explains how his previous research and scientific knowledge are supporting the potential development for clinical diagnostics of  ME/CFS, and Long Covid via blood sampling, however this is in its infancy without clinical trials etc. Peter explains the lack of funding ME/CFS has experienced for decades, prevents advancement of the development of diagnostic and medical support tools to help people living with these chronic conditions. Have a listen to learn more about this and much more from this episode. As always thank you for listening to the podcast, take care #onedayatatime Links mentioned in this episode: Streasure4health website:https://www.streasure4health.com/about-usDutch long covid foundation website: https://www.stichtinglongcovid.nl/Dutch long covid foundation donation page - (disclaimer; I have no affiliation with this foundation)  https://stichtinglongcovid.koalect.com/nl-NL/p/help-mee-doneer/stMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a textThis 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 can use the same energy requirement however the mechanics/movement of certain tasks can be more of a trigger spiking the heart rate and causing PEM/PESE. Robin discusses the difference between a strength issue and a fatigue issue. How it is not always understood that PEM is a physiological issue, not a muscle wasting issue.We talk about the lactate threshold and the protocol Robin has developed to test a person's lactate threshold. We will discuss this further on a future podcast episode. Have a listen to this episode of the podcast to find out so much more; if you would like to contact Robin his details can be found below. Thank you for listening to the podcast and as always #onedayatatime. Links from today's episodeWebsite:https://www.robinthephysio.co.ukhttps://twitter.com/robinthephysiohttps://www.instagram.com/robinthephysioMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Episode sponsor; Turnto - This is a brilliant app, a one stop shop to support anyone living with, caring for or supporting and additionally professionals working with people living with Long Covid and or MECFS - please mention The Long Covid podcast n the "how did you hear about us" section, thank you https://turnto.ai/download?utm_source=link&utm_medium=share&utm_campaign=livinglongcovidpodcastLinktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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 people who are bed bound or light sensitive, meeting the person where they are with their chronic illness. Rachel and I discuss the benefits of introducing light during sunrise to release the natural cortisol triggering the healthy cortisol awakening response. Rachel explains how having mobile phones and wearing smart watches during the night causes sleep disruption, this is because they are all connected to the wifi and emit electromagnetic frequencies, these can destabilise electrons, she explains how if you have MCAS the electrons are already destabilised.We discuss the importance of food for energy and the cortisol levels and avoid low blood sugar levels which takes the body into "fight or flight". Have a listen to the podcast to find out so much more.Thank you so much for listening, as always take care #onedayatatimeLinks from this episode: Rachel's details:https://www.benourished.co.ukEmail: rachel@benourished.co.ukLumie lightshttps://www.lumie.com/?gad_source=1&gbraid=0AAAAAD_riileLYc6GY0VVqc7s2WyLYPw_&gclid=Cj0KCQjw0Oq2BhCCARIsAA5hubV7i1esrD8JF3Ogs3TVl4gyOlV-BxTRkyFFcMkoAVyLlWeNXBplPI4aAlHOEALw_wcBMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 during my recent holiday and what the impact this has had , listen to this episode of the podcast to find out more. Rachel talks about the benefit of natural light thinking about the full spectrum of light, sunrise and sunset. Rachel and I talk about the different severities of chronic conditions and how we can support and meet patients where they are in their journey, and what benefits this can have. We touch upon the benefit of red light and will have a part 3 to this podcast to discuss this in more detail. This is another podcast filled with lots of information, I really appreciate Rachel joining me. As always thank you for listening to the podcast #onedayatatime Links from this episode: Rachel's details: https://www.benourisehed.co.uk/Email:rachel@benourished.co.ukJack Ruse https://jackkruse.com/Alexander Marakovsky https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.htmlDocumentary: Hack Your Health: The Secrets of Your Gut https://www.netflix.com/title/81436688 My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 expand on how the Cortisol can be low in people with Long Covid/post viral conditions. We discuss symptoms challenges and how treatment that we may need has an adverse effect on the gut, but what can we do about it? Rachel shares some little nuggets that may be able help counterbalance those effects. We briefly touch on faecal implant and this will be expanded on in a later podcast!Rachel has an educational course available; HIT and MCAS Masterclass, the links for this are below. As always thank you for listening to the podcast, #onedayatatime Links from this episode: Rachel's details: https://www.benourisehed.co.uk/Email:rachel@benourished.co.ukJack Ruse https://jackkruse.com/Alexander Marakovsky https://www.longdom.org/open-access/the-industry-originated-probiotic-bacteria-role-in-covid19-60345.htmlMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 things have changed for them, their kind and supportive hearts have led them to running an online and now also face to face Long Covid support group in their local area, listen to find out more, thank you so much to both Gary and Karen for joining me #onedayatatime Links from this episode: Long Covid Zoom Support group is held every fortnight on a Monday morning at 10.30 am and our next meeting, after the podcast, will be on July 22nd:To Join Zoom Meetinghttps://us02web.zoom.us/j/89081011346?pwd=MDZsNUJ4WlNHVVlSZEdvTiszMFBZZz09Meeting ID: 890 8101 1346Passcode: 123456Karen and Gary have said “Although we hold the group for people who live on the Fylde coast, as we know how the local clinics and referrals work, others are welcome to join”Facebook page: https://www.facebook.com/groups/387302115930921/My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: info@thelongcovidclinic.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 the general election on the doorstep clapping at number 10 and the infamous WhatsApp messages and documents relating to Long Covid. This podcast is filled with broad and relevant discussions, from children, clean air, teachers, retail workers, disability, gaslighting and so much more. As always thank you for listening to the podcast #onedayatatime Links from todays episode: APPG on coronavirus- report Dec 2020https://d3n8a8pro7vhmx.cloudfront.net/marchforchange/pages/326/attachments/original/1606989975/APPG_on_Coronavirus_Interim_Report_December_2020__%282%29.pdf?1606989975Recommendations- compensation schemehttps://www.pslhub.org/learn/coronavirus-covid19/appg-on-coronavirus-long-covid-report-22-march-2022-r6432/Breathtaking https://www.itv.com/watch/breathtaking/10a4089?gad_source=1&gclid=CjwKCAjwydSzBhBOEiwAj0XN4O9R3xoNuA0z2Fw30GrDFjhuzxO4z-UPFtw3e4ag_77DU0rT2nQzCRoCxPAQAvD_BwEMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: longcovidclinic@howellmedicalgroup.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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, and the impact it has had/has on those we love the most. I think it's important to consider how much life has changed and how hard that is sometimes, but I also wanted to acknowledge how much we learn, and evolve, the resilience and hope. I hope you enjoy this episode of the podcast; please feel free to contact me if you would like me to discuss a particular topic or if you would like to be a guest on the podcast. Take care, see you on the next podcast #onedayatatime.Link from todays episode:FEVERhttps://open.spotify.com/artist/6sqc5lrCbcsjjpTAp6m6cH?si=oRvx9bDEQJC_6A8ZHmNyhAMy Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: longcovidclinic@howellmedicalgroup.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 this was not something she enjoyed while studying at university, however has found a source of therapy in being able to express her feelings while living with a chronic illness. As always thank you for listening to the podcast #onedayatatime Links from todays episode: https://www.instagram.com/@mondayispoetry Anna's website: https://www.therightword.co.ukLinks to pre order the book; Poetry for life and other chronic conditionsWaterstones: https://www.waterstones.com/book/poetry-for-life-and-other-chronic-conditions/a-k-davidson/9781899587827Amazon: https://www.amazon.co.uk/Poetry-Life-Other-Chronic-Conditions/dp/1899587829/ref=sr_1_1?crid=2IL7OGIOVK6ZZ&dib=eyJ2IjoiMSJ9.J2C0eZVgv0a0rwtR60gCd3E88P4TiAp2z9zaECD41O9ljGdleXjp-0RXYmp-qdfE_hrVtoaJa3P5oBTnkO0UgE6yO81-ZbryVnrZofzOvK0TV6qc7MA9vpFHUTdGsHqLmeIiG4dbJlqQre9xOh64RBl-x8y0z8uLZzcToGydhU2KDWEmf_qq0zoB2uyUOuV6WsURQ9rekxhSTHCNt3lC2Q.1HoKBphcxfKGLJyLfQ2rqRjNUeHssui9bNJbCyvvIV4&dib_tag=se&keywords=poetry+for+life+and+other+chronic+conditions&qid=1713546303&sprefix=%2Caps%2C93&sr=8-1My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: longcovidclinic@howellmedicalgroup.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

Send us a Text Message.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 and the resources within the app. I also talk with Ally, who lives with Long Covid, she explains her journey and how she connected with Jess, and the ongoing development and the upcoming release of the Turnto app for Long Covid, and also the app for ME/CFS.This is an innovative app, and more is explained on the podcast, you can join the waiting list to be one of the first to access this FREE app, links are below. *Disclaimer, I have no affiliation with the app*As always, thank you for listening to the podcast #onedayatatimeLinks from todays episode: Waiting list for Turnto - ME/CFShttps://waitlist.turnto.ai/me-cfsWaiting list for Turnto - Long Covid app: https://waitlist.turnto.ai/longcovidInstagramhttps://www.instagram.com/turnto_longcovid/ Allyhttps://www.instagram.com/livinglongcovidCharlottehttps://www.instagram.com/living.with.me.cfsHollyhttps://www.instagram.com/chronicfatiguecompanion My Links:Long Covid clinic -Dr Binita Kane & Julie Taylor; Email: longcovidclinic@howellmedicalgroup.co.uk for more information Linktree:https://linktr.ee/joulestXhttps://twitter.com/julieTa58407536Facebook page:https://www.facebook.com/livingwithlongcovid/Instagram:https://www.instagram.com/julie_livingwithlongcovidPlanners:https://amzn.eu/d/9v9MP4vReturn to work planner:https://amzn.eu/d/1QVK8zn Well being planner:https://amzn.eu/d/a1Safxc

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 all, considering physical, emotional and mental health. We discuss how he is the "safe space" for his clients and the salon environment and his colleagues are his "safe space". We talk about adaptations, accessibility, future plans and opportunities and how other services could implement safe space for inclusion and so much more. This is an inspiring podcast and I thank my son for joining me. As always #onedayatatime take care, see you on the next podcast. Links from today's episode:https://www.facebook.com/Alexander__hairhttps://www.instagram.com/Alexander__hairhttps://www.facebook.com/RDhairbodyandsoul https://www.instagram.com/RDhairbodyandsoulhttps://www.mind.org.ukMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 with using vagus nerve stimulation. I feel positive, and I hope this episode of the podcast is useful for you.  As always #onedayatatime take care, see you on the next podcast.https://pubmed.ncbi.nlm.nih.govMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 court and the outcome from the 6th March 2024, Kevin explains what this means going forward and what can be expected from the hearing in October 2024. Rachel explains how she felt being in the court that day, why she advocates for herself and others with Long Covid, we touch upon her experience with the media and both positive and negative public opinion. I asked Kevin if it is too late for other healthcare workers to contact him, he explains it is not and why, please use the details below if you would like to contact Kevin. A huge thank you to Kevin and Rachel, and thank you for listening to the podcast, as always #onedayatatime, take care. Links from todays episode: Kevin.Digby@gasolicitors.com - please include your telephone number when contacting Kevinhttps://gasolicitors.com/our-people/kevin-digby/ https://wwwlinkedin.com/in/kevin-digby-2321232Facebook: https://www.facebook.com/GAsolicitorsLinkedIn: https://www.linkedin.com/company/ga-solicitorsX: https://twitter.com/GASolicitorsMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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, the research Louise is undertaking, how communication effects the person, their working life, personal life and how adaptations can support an effective return to work. We discuss the research Louise has undertaken to date, her findings and ongoing research in this area. I hope you enjoy this episode, take care and as always #onedayatatime Links from this episode: Office of national statistics:Number of economically inactive people due to long-term sickness in the United Kingdom from May 1993 to July 2023 https://www.statista.com/statistics/1388245/uk-sick-leave-figures/Full study article: Cognitive - linguistic difficulties adults with Long Covid: A follow up study https://www.sciencedirect.com/science/article/pii/S2949903823000325Infograph: Cognitive - linguistic difficulties adults with Long Covid: A follow up study https://drive.google.com/file/d/1ymz_yNrwyQrcoE7lGRwfN_QC7D_6kKwX/viewMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 explains, GA Solicitors have been supporting and representing healthcare workers, due to the negligent exposure for the last couple of years, and are quite far on in this process. Kevin and I discuss what this means for healthcare workers and others in a Q&A, covering how this process works, who it covers, what it means for those effected, appropriate PPE and dispelling myths around timescale for raising a claim. This is an interesting and informative episode, should you wish to speak with Kevin or find out more information please use the links below. Thank you for joining me on today's podcast as always #onedayatatime, Take care.Links from todays episode: Kevin.Digby@gasolicitors.com - please include your telephone number when contacting Kevinhttps://gasolicitors.com/our-people/kevin-digby/ https://wwwlinkedin.com/in/kevin-digby-2321232Facebook: https://www.facebook.com/GAsolicitorsLinkedIn: https://www.linkedin.com/company/ga-solicitorsX: https://twitter.com/GASolicitors My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 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 consider why invisibility is still fuelled with stigma, judgement and disregard, this appears to be historic and although experienced by people with Long Covid, would appear to effect many people living with invisible disability. I don't have the answer to the "why" however I do feel we can collectively, the advocacy groups, charities and individual advocates can continue to raise awareness, educate and make the invisible, visible. The aim of this podcast is to open conversation about invisible disability, its short but relevant #onedayatatimeLinks:Dr Amrita Sen Mukherjee - Ted talk: Invisible disability; challenging bias to enable change https://youtu.be/Ro3SbU95qwc?si=Diw-6RbqQXiuezCtEquality Act 2010https://www.gov.uk/guidance/equality-act-2010-guidanceMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 "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 and beautiful pictures they post, and while I am not disrespecting that I am also being realistic that this is not a consistent reality. Life is not linear and when it moves in a completely different direction to what you thought or had planned it is challenging, it is traumatic and while it can be helpful to look forward to what might be possible, it is so important to allow personal grief. This may include anger, frustration, upset etc and that is ok, it's a normal reaction. I explain how gaslighting has prevented many people from feeling able to explore the emotional impact living with a physical health long term condition. The bottom line of this episode is, we are all perfectly imperfect and I appreciate how much I have learnt, the support I have received and I hope I can continue with the podcast and make sure nobody feels alone #onedayatatime My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 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!  The expectations can often be unrealistic and this creates a risk of us over extending our energy envelope and risks a crash/relapse, having and maintaining healthy boundaries can reduce those expectations and avoid symptom exacerbation. I offer some tips and examples on setting some healthy boundaries, I hope you find this episode of the podcast useful, as always one day and a time and take care. Merry Christmas and I will see you in the new year!My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 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 talks about the peer to peer support groups which are open to anyone and cover a variety of useful topics. You can also find POTS UK on YouTube,  and subscribe to their channel which is full of useful information, short Yoga sessions and various webinars including the Long Covid sessions Jo mentions. I hope you find this a useful episode, as always one day at a time, take care Links from todays episode: support@potsuk.org info@potsuk.orgwww.potsuk.orgMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 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 how this has effected me and the symptoms I have experienced. I discuss how these symptoms can be managed and what helps me to stabilise my autonomic nervous system dysregulation. I am passionate about this subject as I do not think anxiety and depression should be minimised or made taboo. I hope this helps you guys to feel empowered to talk about your emotions, any anxiety and depression without  fear of judgement. Please feel free to contact me vis my social platforms, details below. I hope you have the best day you can, as I always say, one day at a time. My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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  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 long term condition diagnosis of POTS. We discuss how symptom managements can improve quality of life, and Jo gives her top 3 tips for managing fatigue and so much more in this episode.If you would like to contact Jo her information is in the links below. Thank you for listening to this episode of the podcast, as always take care. #onedayatatime.Links from this episode: https://www.instagram.com@jo_thomas_coaching https://jothomascoaching.comhttps://www.potsuk.orgMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

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 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 appreciate all of the messages of support and kindness.Today's episode is going to be a little different, as it is episode 80, the tables will be turned on me, as the interviewer becomes the interviewee (if that makes sense!) Kerry is going to put me in the hot seat as we discuss Long Covid, my break from the podcast, work and my aspirations for the future. The podcast will continue to come out on a Sunday however will now be every fortnight, please do get in touch with me on any of my social media platforms if there are any topics you would like me to cover. As always, thank you for joining me on the podcast, take care. #onedayatatime Link from todays episode:teamlcnmuk.wixsite.com My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

This is episode 79 of the podcast, I have recorded and brought the podcast to you guys every single week for the last 79 weeks. I am appreciative and grateful to everyone single person who has listened and shared the podcast, I also love receiving the lovely messages and comments from you guys, from all over the world. I have always said I want to reach, help and support as many people as possible, so please do keep sharing the podcast out. I have decided after 79 weeks, including Christmas Day! to take a little break and come back with episode 80 in a few weeks. This is a learning journey and I am learning the importance of taking time out and listening to the body, mind and soul. To date, I have had the privilege of talking with so many people, those living with Long Covid and those imparting their professional expertise. I hope you guys have found this helpful. I am reflecting on the importance of taking a rest, having some time out and I will return shortly with more episodes of the podcast. I would like to know your thoughts on whether the podcast remains weekly or I move to fortnightly or even monthly, please contact me to let me know your thoughts, also if you would like me to cover certain topics on the podcast, please let me know. I value and appreciate every listener of the podcast, see you in a few weeks. Take care Julie x My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

Many of you may have seen the news recently, headlines stating Robbie Williams had to stop a gig after only 3 songs; allegedly because he was exhausted and said, it is because he has Long Covid. The Long Covid community reached out online and showed support and care however shortly after this in a video interview, Robbie Williams allegedly stated he uses Long Covid "as a joke". Like many of the millions living with Long Covid, I did not find this "joke" funny at all. I actually think it highlights the misconception and poor education around Long Covid, and highlights the continued stigma of this disabling condition. I therefore wanted to discuss how actions such as this are not only hurtful but also harmful to the Long Covid community. I would not imagine any other long term disabling condition would have been used in such poor taste. I invite Robbie Williams to explain his alleged comments and offer to speak with him, to educate him on the impact Long Covid is having on millions of lives from children to adults and older adults, Long Covid certainly does not discriminate. We cannot control the actions of others but we can offer education and continue to raise awareness of Long Covid. I hope this episode is useful, please consider sharing and tag in Robbie Williams in the hope he can reflect on his alleged comments and actions and possibly apologise to the millions of people this has caused upset. As always, one day at a time, take careMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

My guest today is Merel who is the choir master for the Long Covid Kids Choir. Merel talks about children with long covid and how they lack support and understanding from the wider society. Merel who lives with Long Covid herself wanted to find a way to support children with Long Covid, she contacted Long Covid Kids Charity to find out how she may be able to help and thereafter the Long Covid choir began. Merel explains how the children find a social element to the choir with peer to peer support, creating a social circle that the children can express themselves in and feel safe and understood. We also practice a breathing exercise (please join in with us, it is very therapeutic!). Merel and I discuss her own journey with Long Covid and the impact this journey has on all elements of life, Merel explains how gaslighting has caused a stigma and psychologising of people living with Long Covid and that she has taken comfort in her own part of the Long Covid kids choir. Children with Long Covid need recognising and have their voices heard, having the choir is a great platform for this, we decide during the podcast the children should aim to be Christmas number 1 and I hope the whole Long Covid community would support making this happen! This is a great episode and I hope to raise more awareness of children, their siblings and parents who are living with long covid. If you would like to know more about the choir or to join click on the link below. As always, one day at a time and please take care.Links from todays episode: https://twitter.com/@LCKChoir2022https://www.longcovidkids.org/team/merel-van-der-knoop  https://twitter.com/@merelpianist https://twitter.com/@LongCovidKids https://www.instagram.com/@merelsmusicroom Choir videos https://www.youtube.com/watch?v=Bt7gtBf3Ucohttps://www.youtube.com/watch?v=rtMyrSZyTSsMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

After a run of amazing guests I find myself alone on the podcast today, I wanted to talk about the impact the past, present and future has on every day. A memory popped up on my social media, a picture of me pre Long Covid. I looked at the picture and remembered, it  was a beautiful day, the fun I had with a good friend, the good food and drink, the laughs we had, and then I went off to the gym, and that was the selfie that I had captured, the picture evoked such strong feelings, memories of days gone by, and I felt loss, grief, anger and frustration. I really don't want to feel like that, but I understand we have to lean into all of our feelings. I tried to work through my feelings and revisited the picture several times. I started to feel gratitude for that day, for the memories, and I opened myself up to allow myself to take a gentle walk around other memories I have, and enjoy thinking of those. I wanted to share this and much more with you guys on the podcast today, as I feel embracing the past, present and future is important when you are working towards living your best life, with chronic illness. I hope you find this episode useful; as always please take care. My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

In this episode of the podcast I talk with guest Rachel Jessey who is the owner of BeNourished. Rachel has been in clinical practice for 13 years and over the last 3 years has been heavily involved in the long covid space. Rachel talks about how her interest developed in the oral, nasal and gut microbiome, and how her son was effected after being hospitalised with sepsis. Rachel discusses how the various species within the gut microbiome have important functions within the body and how when these are depleted they have an adverse effect on immune function. Rachel explains how the viral persistence from the gut systemically affects inflammation and platelets, and gives some information on what we can do to help our microbiome. We discuss vedicinals, current research and detox protocols that Rachel is involved in, and this research will be available soon. Rachel talks about the vagus nerve and its role within the body and how the vagus nerve can be supported along with other tips to help digestion and so much more.This is a really interesting and informative episode. I hope you enjoy the podcast, and as always thank you for listening and take care. Links from todays episode:https://timehealth.co.ukhttps://www.benourisehed.co.ukEmail:rachel@benourished.co.ukMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

In this episode of the podcast I am please to have another great guest join me, Reema Ahmad is a Neuro linguistics programming (NLP), trauma and relationship counsellor and also a life coach. Reema is also an author of the book;  un-parenting: sharing awkward truths with curious kids and a two time guest for Ted talks. Reema has long covid, and talks openly with me on this episode, about her experience of having Long Covid in India. Reema is the sister of the fantastic, Dr Asad Khan and she explains how her brother helped and supported her, while managing his own journey with Long Covid. We also discuss, trauma, culture and how to consider the body, mind and soul and letting go. Reema talks openly around her own suicide attempt, how she approached this and used her experience to began to understand how important it is to accept help. Reema discusses how the physical, emotional and mental elements affect the body and how to be curious about your body. I hope you enjoy this episode and as always take care. Links from today's episode:Rheema Ahmad; Un-parenting: Sharing awkward truths with curious kidshttps://www.amazon.in/dp/0143447769Of dry tongues and brave hearts - first book Rheema editedhttps://amzn.eu/d/iEWC5WW TED talks; Reema Ahmad, being comfortable with discomforthttps://youtu.be/XRiTo64W8elMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

In this episode of the podcast I was lucky enough to chat with  Gez Medinger, I appreciate Gez being a guest on this episode and sharing elements of  his own Long Covid journey and much more. Those who are familiar with Gez will know he has done a great deal for the Long Covid /MECFS community, using his YouTube channel to raise awareness, while participating and leading on research  and providing  educational videos on Long Covid and post viral conditions . Gez has interviewed and worked with some of the worlds leading clinicians and regularly makes interviews and  information available on his channel. The videos are educational and informative, if you have not watched them I have included the link in the show notes. We also discuss the book; The Long Covid Handbook, which Gez co wrote with Professor Danny Altmann and how the book encompasses Long Covid and everything that is known to date. This is available from Penguin health handbooks, the link is in the show notes from this episode. I hope you enjoy this episode of the podcast, as always thank you for listening and take care.Links from today's episode:https://mesupport.co.uk - Bell's disability scalehttps://www.youtube.com/@RUNDMC1 - Gez Medinger YouTube channel https://www.penguin.co.uk/book/453380/the-long-covid-handbook-by-altman-gez-medinger-and-professor-danny/9781529900125 - The Long Covid HandbookMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

On this episode of the podcast I am grateful to welcome guest Dr Sarah Glynne. Many of you have contacted me regarding hormones and the peri menopause/menopause, asking if this is a subject I could cover along with an expert, so I am positive this is going to be a useful and interesting podcast to many of you. Dr Glynne and I discuss the link between covid 19 and hormone imbalance, we talk about the disruption in menstrual cycle and the onset of peri menopause and the menopause. The potential treatment and how this can elevate symptoms, Dr Glynne acknowledges the blurred lines between some of the symptoms of Long Covid and hormone imbalance however we discuss how any symptom relief is important and should be explored. Dr Glynne tackles the myths around HRT and the dated and misrepresented information on the use and risks of HRT. We discuss the menstrual cycle and disruption in cycle to females of all ages and what treatment options may be suitable. This is an informative and interesting episode which holds value to patients, healthcare professionals and anyone with an interest in hormone imbalance and covid 19/Long Covid. I hope you enjoy this episode of the podcast and as always take care. Links from this episode:Pauls antihistamine paper:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8494538/Balance menopause testosterone resources:https://www.balance-menopause.com/?s=testosteroneLong covid, hormones and gut health:https://balance-menopause.com/uploads/2022/05/LC-diet-and-hormones-final.pdfLong covid and female hormones:https://www.balance-menopause.com/menopause-library/long-covid-and-female-hormones-factsheet/My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

In this episode of the podcast I discuss making peace with a long term condition, how do you do that? have I made peace with mine?Why is making peace important, what value does that bring to your life?I discuss my feelings, my anger towards the Government the NHS and the psychologising of Long Covid, and how making peace with a long term condition does not mean accepting those things. I explain how peace can bring a better quality of life, living in the moment of where we are right now rather than where we have been or where we would like to be in the future. I talk about how gratitude helps me to have peace within myself however this does not over rule all of my varying emotions as having peace is allowing yourself to be truthful with how you feel as well as where you are physically, mentally and emotional in your journey. This episode may resonate with you, as always thank you for listening and as always please take care. My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

On this episode of the podcast I discuss my Long Covid treatment and medical professional input from acute covid to the treatment I am having to date. I started treatment 6 months ago and I explain more about this and reflect upon my journey to getting to this point. Like many I have been unable to access any appropriate treatment or medical professional input via the NHS, this does seem to be a postcode lottery and Long Covid clinics I am advised more often then not are not fit for purpose. My experience with the Long Covid clinic in my area took 2 years to access, was brief and inappropriate, I discuss this on the episode. I talk about using my medical knowledge to manage my symptoms and to support getting a referral to cardiology and gaining a diagnosis of POTS.I explain how meeting Dr Binita Kane and interviewing her for the podcast opened a door for me to access treatment via the private sector route. I have now been on treatment for 6 months. I also discuss how this journey and following losing my NHS job has led me to have the opportunity to work alongside Dr Binita Kane, to find out more listen to this episode, as always please take care. Contact for Private, Long Covid Clinic: Dr Binita Kane and Julie Taylor longcovidclinic@howellmedical.co.uk Paper inclusive of Dr Asad Khan and Prof Pretorius et alLong Covid: Pathophysiological factors and abnormalities of coagulationhttps://www.sciencedirect.com/science/article/pii/s1043276023000553My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching websiteLong Covid Clinic (Julie Taylor & Dr Binita Kane - contact; longcovidclinic@howellmedicalgroup.co.uk for more information

On this episode of the podcast I discuss rest and restorative rest, what is the difference. Did you know that there are 7 types of rest? I didn't! well, definitely not  pre Long Covid.  I didn't understand what restorative rest was never mind the varying types that we need to maintain equilibrium. I talk about how many of us spend so much time burning energy but not restoring that energy, minds working overtime, screen time, overworking ourselves, physically, mentally or emotionally. Now, Long Covid has slowed me down, certainly physically but does that mean I get restorative rest? the short answer is no.Lack of restorative rest impacts on our ability to preserve energy, implement effective pacing and could impact on the cycle of crash and relapse (boom/bust). This is very different for each individual and definitely not a cure, but having restorative rest can have the potential to help with our varying symptoms and help with some improvement in quality of life. I hope this episode of the podcast is useful, thank you for all of the wonderful messages, and as always please take care.  My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching website

On this episode, I have a lovely guest, Shannon is a secondary school teacher from Perth, Western Australia. Shannon was working in an Australian university when she fell under the government vaccine mandate during the pandemic. Subsequently Shannon had an adverse reaction to the vaccine, and for the last 14 months has been living with vaccine injury induced Long Covid. Shannon has had to give up her dream job, losing her work contracts and permanent job role. Shannon has a two year old daughter and has struggled to maintain some normality in her family life, for her young daughter, Shannon has a very supportive husband but misses the life she once knew. Shannon has researched and searched to find treatments, therapeutics and/or support to help improve her health. Finding solitude within support groups and my podcast. Shannon speaks openly abut the vaccine mandate and how this made her feel, the medical gaslighting she has experienced since her vaccine injury and the lack of empathy following the acute phase of illness. Shannon wanted to be a guest on the podcast to raise awareness of vaccine injury and be a voice for those who feel silenced. I thank Shannon, and hope this episode is impactful and helpful, as always please take care. My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching website

On this episode I am fortunate to have a guest; David Osborn is a health and safety consultant. David specialist area is hazardous substances, he became involved with health and safety concerned with the pandemic in January 2021, in the middle of the second wave, David is involved with the covid public inquiry through being a member of the Covid airborne transmission alliance (CATA). David and I talk about PPE (personal protective equipment) what this is and what it is not, the difference between FFP3 mask and alternatives versus a basic surgical mask, which David explains is not PPE. We discuss the lack of RIDDOR (Reporting of injuries, diseases and dangerous occurrences regulations) completed in the work place for frontline workers being infected by the virus. David has completed a blog which includes a form that can be completed and sent to your employer to request a RIDDOR is completed, David explains this is not time limited and therefore this can still be done and would help those living with Long Covid for any future support, David likens this to the armed forces compensation scheme. You can find the link to this below and is worth completing. We discuss CATA involvement with the covid and inquiry and much more.I hope this is a useful podcast, as always please take care. This blog contains the documents David discussed which can be completed to raise a RIDDOR and also send to your local MP: Forgotten héros - the sequel:a blog and resources from David Osbornhttps://www.pslhub.org/learn/coronavirus-covid19/questions-around-goverment-governance-on/forgotten-heros-%E2%80%93-the-sequel-a-blog-and-resources-from-david-osborn-r9277/My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching website

It is a privilege to have a  guest join me on the podcast; Oonagh Cousins is a professional athlete living with Long Covid. Oonagh made the difficult decision during Christmas 2022 to retire from her rowing career and from her place on the British rowing team. Oonagh talks openly with me about her journey with Long Covid, the impact of her symptoms and trying to rehab with her old club ULBC before rejoining the British rowing team in September 2020.We talk about the sterotypes of Long Covid and the difference in Oonagh's experience, due to her being an athlete. Oonagh talks openly about her Long Covid journey, and her loss and the experience of loss everyone has in different ways with Long Covid. Oonagh talks about her return to exercise following a year and a half of rest and recovery, Oonagh explained her return to exercise was not graded exercise and she worked with a physiologist to workout what was possible. Unfortunately Oonagh was then diagnosed with Dysautonomia and eventually she experienced a relapse. We talk about Oonagh's decision to leave her rowing career and her thoughts for the future among much more. I thank Oonagh for joining me on the podcast and hope you enjoy this episode, as always take care. My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4vhttps://amzn.eu/d/1QVK8zn - Return to work plannerhttps://amzn.eu/d/a1Safxc - well-being planner https://www.julie-t.com/ - Julie Taylor life coaching website

On this episode of the podcast I discuss the term "brain fog" and if this is appropriate when talking about neurological impairment in Long Covid. I discuss research and two papers which explain neurological complications with Long Covid and other post viral conditions. Cognitive dysfunction is scary, experiencing the loss of words, forgetting full conversations, moments in your life. Cognitive dysfunction effects many of our systems and evokes a multitude of associated symptoms. I also discuss how cognitive impairment is often suggested by medical professionals, as being a mental health condition, anxiety/depression rather than being acknowledged as cognitive dysfunction. This is detrimental to any treatment or therapies required for either/or cognitive dysfunction or mental health. It is imperative that further research is undertaken, and medical professionals have extended training, on the multi complex condition Long Covid is and how to appropriately address and treat the associated symptoms that effect the person, physically, cognitively, emotionally and mentally. I hope you enjoy this podcast and always please take care. Nature reviews microbiology - Hannah. E. Davies et elhttps://www.nature.com/articles/s41579-022-00846-2National Library of medicine - Brain fog as a long-term sequela of covid 19https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9685075/My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

This episode of the podcast was difficult to record. I worked so hard to achieve my nursing qualification with the aim to work and look after patients within the NHS. I had aspirations, aims to continuously develop my nursing knowledge and experience. To deliver optimum care and support to patients and their families. Facing a pandemic may have been unprecedented times however this does not excuse the ill prepared approach that was undertaken from the onset. The risk placed upon so many frontline workers, people lost their lives and millions now live with a long term disability/condition. That is only one part of the journey, as subsequently those very frontline workers including myself are losing their jobs. This is not being reported freely, the treatment of NHS staff, carers and other frontline workers is underhand and inexcusable.I am aware while under contract workers are muted, however I have lost my job, I no longer have a contract (or an income) so I am no longer muted. I speak openly about my journey to losing my job, the lack of support or empathy. I repeat several times because it is relevant, I was made redundant, we are 50k nurses short in the UK and I lost my job, without good reason. The irony is also in my job title, Nursing recruitment project lead, it is incomprehensible. I hope you find this episode useful, please share far and wide so we can highlight what is going on within the workforce. Even if it saves one person from losing their job and educates employers that is worthwhile. As always, thank you for listening and take care. https://amp.thegaurdian.com/society/2023/mar/26/nhs-england-staff-shortages-could-exceed-570000-by-2036-study-findshttps://www.nursingtimes.net/news/global-nursing/nurse-shortage-branded-a-global-health-emergency-23-03-2023/My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

On this episode of the podcast, I had the pleasure of talking with the founder and CEO of The Visible App, Harry Leeming. If you haven't downloaded the app the link is below, after listening to the podcast I am sure you will want to have this useful tool. Harry explains the app, how it monitors the HRV (heart rate variability) and HR (heart rate) along with self reported information. The app can then provide information and a pattern which can support you to understand when the body is at baseline, under stress or at risk of being under stress, which is a great tool for identifying potential crashes/relapse. Allowing the user to adapt, pace and try to avoid crashes/relapse. Harry explains the app is constantly being improved and added to and gives an insight into the future of Visible. Which is exciting, you will definitely want to hear the future plans. Harry also shares his own journey with long covid and how this led to the development of the App. I hope you enjoy this episode and as always take care. See you on the next podcast. Harry's links: https://www.instagram.com/visible.health/https://twitter.com/visible_healthhttps://twitter.com/HarryLeeminghttp://makevisible.com/blogMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

In this episode of the podcast I had the honour of speaking with Dr Asad Khan. Dr Khan talks openly about his own experience of Long Covid, the treatment he has had, the gaslighting experienced, subsequent diagnosis of MCAS, POTS and pericarditis. Dr Khan explains the treatments he has had to date and how he has had to travel to access these treatments as we are not undertaking these in the UK. This has been undertaken privately and Dr Khan acknowledges how not everyone can afford or are able to access treatments abroad. We discuss how this impacts life,  how people have lost their lives and taken their lives due to the disabling impact of Long Covid. Dr Khan and I talk about vaccine injury, organ damage and the possibilities that appropriate research and treatment may offer. Dr Khan offers hope for the future and advises people to try to understand and read up on their symptoms, implementing some pacing, vagal nerve stimulation, protecting the gut microbiome and other symptom management. I hope you enjoy this episode and Support Links:https://findahelpline.comhttps://www.papyrus-uk.orghttps://www.samaritans.org - Tel 116 123Dr Asad Khan Links:https://linktr.ee/doctorasadkhan?utm_source=linktree_profile_share&Itsid=37c3e9a1-c15d-40d5-ab31-a9ef41b92ca4Instagram:https://www.instagram.com/doctorasadkhanTwitter:https://twitter.com/doctorasadkhan My Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

On this episode I talk about how I try and see light in the darkest of times. It is often a lonely and scary place to be when we are going through a dark time of our lives. It can be difficult or impossible to come out of that dark place. We can forget, loss is grief and grief has many stages and manifests differently for each person. We also forget that grief is not just the loss of someone human or pet (which is a very difficult time and I am not undermining this) but it is any significant loss to us, anything that has an impact on our lives, the loss of a relationship, a job, a failed exam etc. Loss comes in many formations to our lives, as does the way those losses impact us. Losing your health means losing independence, the life we once had, the dreams, aspirations and future plans, that is a huge thing to deal with. Working through the grief cycle is different for everyone, and is not linear. We can go in and out of this cycle for a very long time, there is no right or wrong way to deal with loss. I talk around, trying to see light through the darkness and owning all of our feelings while trying not to stay in the darkness for too long. I personally feel, we learn from everything in life including the most challenging times of our lives, when nothing seems to make sense. It is ok to not be ok, to reach out for help. I have put some support links in the show notes. I hope you can see light in the darkness and know every storm is followed by a rainbow. As always, thank you for listening to the podcast and take care. https://www.samaritans.org  - Samaritans call 116 123https://unitedgmh.org - United for global mental health https://grief.com - Five stages of grief by Elizabeth Kubler Ross and David KesslerMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

In today's episode of the podcast I am lucky to have a brilliant guest; Emily Bland is a clinical physiologist and POTS and Fatigue Specialist. Emily and I discuss her own journey with POTS, ME/CFS and endometriosis and how this has led to Emily taking her career path and studying over many years to specialise in this area. Emily is focussed on holistic person centred care and the individualised approach to supporting people with their condition(s) and accompanying symptoms. Emily explains what the role of a clinical physiologist and how specialist the role is and how it supports people living with chronic illness. This is an interesting conversation which many people will resonate with, Emily has provided links to charitable organisations and also links to her website, LinkedIn and social media below. I hope you find this episode of the podcast useful, I hope you have the best day you can, Take care. Charitable Organisations: https://www.potsuk.org/ - POTSUKhttps://www.ehlers-danlos.com/ -EDS Societyhttps://meassociation.org.uk/ - ME associationEmily Bland contact details:https://www.facebook.comExPhysEm - Emily's Facebookhttps://www.linkedin.com/in/exphysem - Emily's Linkedinhttps://www.instagram.com/dog.autonomia/ - Emily's Instagramhttps://www.exphysem.com - Emily's WebsiteMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

This episode of the podcast follows on from the last where I talked about Post exertional malaise (PEM), I talk on the subject of crashes. I have found the cycle of crashing and relapsing (boom and bust) very difficult. In the early days I found crashing challenging to deal with or to understand, I have pushed many times causing PEM and crashes. I did not initially understand what was happening.  I was just trying to push through with the aim of getting back to my old self,  my old life. This was never going to be a possibility and I have made myself much worse at times. This is difficult to come to terms with but it is important to try and make peace with where I was at and work out how I could manage, stay within my energy envelope and avoid crashes. I use various symptom management tools and of course I always champion the 4Ps as pacing is the key when trying to manage energy and avoid those crashes. It is important to note that this is individual to each person considering lifestyle, tasks, symptoms, responsibilities, abilities etc. I still have the 4Ps planner available on my Linktree which can be used to support you with pacing. I also champion the visible app which you can download from your App Store. I hope this episode is useful, as always please get in touch with any comments, or questions. I hope you have the best day you can, as always take care. UK helplines:https://www.samaritans.org  Tel: 116 123https://www.mind.org.uk International helplines: https://www.thecalmzone.netMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545https://amzn.eu/d/9v9MP4v

This episode considers PEM/PESE why is it so difficult to understand, manage and avoid? I discuss what PEM/PESE is and how is triggered and what that means to daily life. I have spoken with many people who find they struggle to manage PEM as they can't understand what it is and what it does to the body. I have struggled with this myself as it seems to be able to occur with no reason. PEM is triggered from exceeding the energy envelope which can be due to physical, emotional or mental use of energy. I find this makes it a taskmaster, working out what your personal triggers are, the delay in symptom exacerbation can make it confusing to work out at what point PEM was triggered. I discuss journalling, to identify triggers and using pacing, monitoring symptoms, exacerbation of symptoms can be identified using this method and could be a tool to help avoid PEM. You can download my 4Ps planner from my link tree, the link is below. I hope you find this episode useful, as always please take care. Today's links: https://emerge.org.auhttps://www.jospt.org - Lessons from myalgic encephalomyelitis/chronic fatigue syndrome for Long Covid: Postexertional symptom exacerbation is an abnormal response to exercise/activityhttps://covidcharity.orghttps://longcovid.physioMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545

On this episode of the podcast I am talking about a very simple question, most people ask most days "how are you?" Such a simple 3 little words, so why do they fill me with dread? Simply put I don't know how to answer this anymore, I feel it is a reflex question that goes, "how are you?,  "I am fine thank you, how are you?" and I am not ok, so I can't bring myself to say that I am. I have noted if I have ever said, 'I am fine thank you" the response when I see a person another time, they can be like, "oh are you unwell again" and that is so frustrating. No I am not unwell again, I am living with a long term, currently incurable/treatable condition. Is this an opportunity for education? should we stop asking "how are you" unless we truly are interested in the other person's wellbeing? I think it is key to consider how this 3 word open ended question could adversely effect the other person, it could prevent someone from feeling they can open up and seek help, if they are not ok. It could cause people to retract from society to avoid these types of empty questions. I hope this episode of the podcast is useful, if you do need support please reach out and seek help. This may vary from area to area and country to country , if you are unsure ask your healthcare professional to point you in the direction of support. Links:Samaritans - https://www.samaritans.orgMind - https://www.mind.org.ukMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545

In this episode of the podcast I thought it would be useful to discuss planning and preparing for a return to work. I wanted to share my lived experience of returning to work and what process needs to be considered and completed prior to returning to work. I tried to fumble through the process of returning to work after an extensive period of time off, and with a long term condition/disability. This in itself is hard work, so I thought this would be a useful podcast. I have also created a short document/notebook and return to work process chart, to support others returning to work. I will share this with you guys across my social media platform and place it on my link tree. I discuss the richness of experience workplaces are losing by dismissing people with Long Covid and how the government needs to re-evaluate this and put funding into Long Covid, as this is just adding to an already depleted workforce. It is also leaving people financially vulnerable and trying to manage a condition resulting from the pandemic with no treatment or cure. Supportive links from today's episode:https://acas.org.uk - UK employment lawhttps://equalityandhumanrights.comhttps://hse.gov.uk - Principles to support disabled workers and workers with long-term health conditions in workhttps://tuc.org.uk - Reasonable adjustments disability passporthttps://som.org.uk - Long Covid and return to work- what workshttps://www.gov.uk- access to workMy Links:https://linktr.ee/joulesthttps://twitter.com/julieTa58407536https://www.facebook.com/livingwithlongcovid/https://www.instasgram.com/julietaylor9545