Living with Long covid

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

Send us a textOn 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: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 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: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 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: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 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: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 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: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 textMany 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: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 textMy 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: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