Living with Long covid

Send us a textHappy new year, I wish all of my listeners a happy, peaceful and brighter new year. In today's episode I am talking with Chiara Berardelli a former GP and current musician singer songwriter. We discuss a new song Chiara has released which is inspired by her experience of Long Covid and learning to accept and live with the condition. Chiara talks about her experience with pacing and how she manages her energy levels. We also discuss Chiara's own experience as a former GP reaching out to health care professionals, in terms of Long Covid, gaslighting, poor understanding and reluctance to diagnose Long Covid. Chiara acknowledges the pressures of the medical profession however this has an adverse impact on people with Long Covid reaching out for support and being dismissed. I hope you enjoy the episode, as always take care. https://www.chiaraberardelli.comHttps://youtu.be/Og6BqUuN7kUMy 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 know this episode will go out on Christmas Day, I had thought about leaving the podcast for a week or so, as I put it out on a Sunday however I thought someone may find it helpful. I talk about Christmas, reflection, the ghosts of Christmas past and looking to the future...no it is not my version of scrooge I promise. I find a year end and new one beginning does evoke reflection and this can be hard when you are trying to learn how to live with a new version of yourself. I talk about reframing thoughts to what is possible and not thinking deeply about the loss and what is currently not possible. I also share a lighthearted festive poem and some thoughts and ideas on festive pacing, we need the 4Ps all year round. I hope you enjoy the episode. Merry Christmas and as always please take care.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 I talk about communication, the importance of having a voice and how Long Covid may impact on our communication. I discuss the various methods and restrictions of communication, how having my voice distortion has effected the person I once was, before the pandemic. I reflect on what I have learnt during my career as a carer and a nurse and methods I have used to support people with communications needs. Ultimately I feel you can't truly understand how it feels until you live with a certain condition, challenge, disability or situation. The lived experience is often undervalued but has the most enriched knowledge share. I encourage people living with Long Covid or any other conditions which effects communication to find their voice in any format they can, to be heard using any adaptation needed. I urge society to take a moment to consider how they would feel in this situation, learning to live a very different life to the one previously known, to talk to people they know, colleagues, friends and loved ones and not top ignore, dismiss or disbelieve them, making their voices smaller. I have a voice, you have a voice, we can and will be heard. I hope you enjoy this episode, as always please take careMy 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

Dr. Wes Ely, an internist and critical care physician, passionately advocates for Long Covid patients and is the author of 'Every Deep Drawn Breath,' donating proceeds to support survivors. In this discussion, he highlights the importance of holistic patient care and the need to validate Long Covid as a legitimate medical condition. Dr. Ely differentiates between brain injury and brain fog, unveiling how Long Covid can affect brain function. His impactful TikTok videos urge medical professionals to listen to and properly treat their patients.

Send us a textIf you follow me on social media you may be aware I have started a slow phased return to work. I want to share this journey with you, the highs, lows and anything in-between. I am hopeful my experience can support others in their own journey. I talk about planning the return to work, what to consider and how a very flexible plan needs formulating and agreeing. I discuss how a standard 4 week phased return is not fit for purpose and this needs acknowledging across all workforces, in order to support a successful return to work. Returning to work after a long absence and with a new long term condition is a task master, there are lots of considerations to make, adaptations and flexibility are paramount. I hope sharing my own return to work will be helpful for you guys and any employers, who made need to gain a greater understanding of Long Covid. As always, thank you for joining me and take care. I include below some supportive contacts and information links: https://www.som.org.uk - The society of occupational medicinehttps://longcovidwork.co.ukhttps://www.gov.uk - access to workhttps://www.citizensadvice.org.ukhttps://acas.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

Dr. Jacob Teitelbaum, a medical doctor and author, shares his personal journey with post-viral ME, which inspired his life's work. He introduces the SHINE protocol as a holistic approach to treating post-viral conditions, discussing essential medications, nutrition, and exercise. The importance of tailored care is emphasized, as each individual faces unique challenges. Listeners learn about dietary strategies, managing energy levels, and the delicate balance between joy and discomfort in their recovery journey.

Send us a textIn recent months I have been contacted by many people feeling very low and even experiencing  suicidal thoughts. I felt compelled to acknowledge this and after expressing my concerns, my wonderful son suggested he could come onto the podcast to share his,  journey with self harm, mental ill health and suicidal thoughts. I appreciate this is a difficult topic but one that is not spoken about enough. Both Alexander and I hope this podcast can reach anyone feeling this way and let them know, they are not alone and help is available. People feel suicidal for many reasons, the office of national statistics have a paper acknowledging suicides among those diagnosed with sever health conditions. Having a newly acquired and life changing long term condition this resonates. With this in mind Alexander and I have a very open conversation and lay out the very vulnerable and personal lived experience, in the hope it encourages anyone in need to reach out for help and support. Also that is it ok to not be ok, and finally that this podcast encourages anyone to check in with friends/ family and ask "but are you really ok?Thank you for joining us, as always take care. Support links from today's episode:https://befrienders.org - Link to a tool to search by country for emotional support and helplineshttps://andysmanclub.co.ukCALM - 0800 585858National suicide prevention helpline UK - 0800 6895652SANEline - 03003047000https://www.papyrus-uk.org - Papyrus UK suicide prevention/prevention of young suicide :Tel 0800 0684141https://www.ons.gov.uk - Office at national statistics - Suicides among people diagnosed with severe health conditions, Englandhttps://www.samaritans.org  :Tel 116 123 - text SHOUT 85258https://www.mind.org.uk  - mind charityMy 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 textToday is episode 40 of the podcast, I can't quite believe that I have recorded 40 episodes, had some excellent guests join me; and most of all reached so many people across the world. Thank you for listening to the podcast, I hope you find it helpful.In today's episode I am privileged to have my first ever guest return for a catch up, Ian and I talk about how he is managing with Long Covid, what he has learnt from his journey so far; sharing a few tips along the way. We also discuss the excellent advocacy work he undertakes within his Trust and how having something to support people with Long Covid, in all work areas would be a great support and asset. I hope you enjoy the podcast, as promised I  have added some links to support groups, you will find many more across the social media platforms. Please continue to send your lovely messages, I do like hearing from you. You can also join my Facebook page, and/or follow me across the social media platforms, all links are below, as always take care. As promised links to some support/advocacy groups; these are just a few:https://twitter.com/@LCNMUKhttps://twitter.com/@longcovidirlhttps://twitter.com/@longcovidwaleshttps://www.longcovid.scothttps://twitter.com/@longcovidOThttps://longcovid.physiohttps://www.longcovidkids.orghttps://www.longcovid.orghttps://www.longcovidsos.orgMy 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

Nilihan Sanal Hayes, an expert in research and trials, discusses ongoing pacing trials aimed at aiding those with Long Covid and ME/CFS. They delve into the innovative use of real-time feedback through wearable technology to assist individuals in managing their symptoms. The conversation highlights the historical neglect of post-viral conditions and the urgent need for research funding. Nilihan also shares how findings will be disseminated via social media, fostering community engagement in the exploration of better therapeutic resources.

Send us a textIn this episode I talk about how the changes of the season may effect symptoms of Long Covid and other long term conditions. This can be improvement or exacerbation. This is something I have noted over time and now work to prepare my body for the seasonal change and manage my symptoms. I have found the weather effects people in different ways and some work better in warmer climates while others welcome the cooler days. I find it interesting how the same conditions have different symptoms and effects on different people. whether your preference is warm, cool or cold conditions it is important to recognise the weather can impact on symptoms, this awareness can be helpful for symptom management. I hope you enjoy the podcast, please contact me with any tips you may have for the changes of the season, as always take care, see you on the next podcast. 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