Living with Long covid

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 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 textFollowing on from the last episode of the podcast, as promised this is part 2 with Rachel Jessey from Benourised. We continue and expand on the short conversation we had at the end of the last episode on faecal implant, Rachel has so much knowledge and this is a really interesting topic. We also talk about the circadian rhythm and how we can reset this rhythm which supports the natural absorption of vitamin D, sleep, digestion and more. I explain what I put into practice during 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 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 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 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 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 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 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: 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 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: 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 textOn this episode of the podcast I chat to freelance writer and editor A. K. Davidson. We talk about her book; Poetry for life and other chronic conditions, which is due out on the 6th June, the link to pre order the book can be found below. Anna talks about her journey and experiences with acute and Long Covid, and how she now feels recovered, in a slower more thoughtful pace of life. We discuss how Anna put pen to paper to create these short and thoughtful poems, she admits this 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: 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 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: 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 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: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 textAs requested by those of you who follow me on social media, in this episode of the podcast I am sharing my experience so far, of using a fitted vagus nerve stimulator (VNS). I have aimed to answer all of the questions you guys asked me. I have given some information on the VNS, how it is fitted, what it does and how I am finding it at this point, including any symptom improvement. I touch upon alternatives for stimulating the vagus nerve and what the suggested benefits are with 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: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 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: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 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: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 textOver the last couple of weeks you may have seen in the news,  Dr Fearnley and the group she co-founded Long Covid Doctors for action; If not, these are a group of doctors who have come together to take action against the NHS negligent work place exposure. They are being represented by Bond Turner. Today, I am fortunate to be able to talk with Kevin Digby, a partner at GA Solicitors, just to make clear this is a completely separate legal firm to Bond Turner. However Kevin 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: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 textOn this episode of the podcast I discuss invisible disability, and how a Ted talk I recently had  sent to my inbox, had such an impact on me. I watched the Ted talk and could relate to Dr Amrita Sen Mutherjee  experience of living with her own invisible disability. I resonated with her experience of having her condition diagnosed, and the subsequent impact to her life, family life and career. UK Parliament estimate 70 to 80% of disability is invisible, which made me 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: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 textHappy new year to everyone, this is the first podcast of 2024 and I will be honest it has no structure at all, but then that was the point!I wanted to talk today about how not everything is or can be structured, how the general consensus is "new year new me", but that is not always realistic and just becomes an added pressure and expectation. I explain how I have reflected on many things recently, I look at social media like anyone else, and see the wonderful experiences 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: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 textIt is Christmas Eve 2023 and on this episode of the podcast I talk about creating healthy boundaries. What are healthy boundaries? how can we set and manage healthy boundaries in our lives?I discuss how important healthy boundaries are to support our health and wellbeing. How setting boundaries support open, honest and healthy relationships. I appreciate  setting boundaries can be a challenge, we have expectations of ourselves and people have expectations of us!  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: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