Living with Long covid

Send us a textIt 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: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

The discussion delves into the confusing term 'brain fog' and its implications for those experiencing cognitive dysfunction post-COVID. Key symptoms include memory lapses and difficulty focusing, which are often mischaracterized as mental health issues like anxiety or depression. The speaker shares personal experiences to illustrate the challenges faced in daily life. There’s a strong call for more research and better training for medical professionals to understand and address the multifaceted nature of these symptoms.

Send us a textThis 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: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

Harry Leeming, Founder and CEO of The Visible App, previously a Formula One engineer, shares insights on his health journey with long COVID that inspired the creation of the app. He explains how the app tracks heart rate variability and helps users prevent crashes by understanding their body's stress levels. Harry discusses innovative features in development and emphasizes the importance of using technology to manage chronic conditions effectively. The conversation highlights community advocacy and the evolving landscape in chronic health management.

Dr. Asad Khan, a respiratory consultant specializing in sleep medicine and long-term ventilation, shares his poignant journey with Long Covid. He discusses personal experiences with gaslighting, multiple health conditions like MCAS and POTS, and the lack of accessible treatments in the UK. Dr. Khan highlights the risk of vaccine injuries and the disabling effects of Long Covid, while offering hope through self-education and symptom management strategies. His advocacy for better understanding and research underscores the urgent need for support for affected individuals.

Send us a textOn 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: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

Emily Bland, a clinical physiologist and fatigue specialist, shares her inspiring journey through POTS, ME/CFS, and endometriosis, which shaped her commitment to holistic, person-centred care. She discusses the critical role of clinical physiologists in managing fatigue and the emotional toll of misdiagnosis in chronic illness. The conversation dives into the importance of personalized care and the healing power of pets, illustrating how companionship can provide much-needed support during health challenges.

Explore the emotional rollercoaster of living with long COVID as the host shares personal experiences with crashes and relapses. Discover coping strategies that emphasize self-compassion, understanding energy limits, and the importance of pacing. Learn how to navigate the boom and bust cycle while developing personal symptom management tools. The discussion also highlights the significance of working within one's abilities and responsibilities to avoid further setbacks, all while encouraging support and sharing resources.

Dive into the complexities of Post-Exertional Malaise (PEM) and Post-Exertional Symptom Exacerbation (PESE). Learn how these conditions can be triggered by various factors, making daily life a challenge. Discover practical strategies for managing energy, identifying personal triggers through journaling, and the importance of pacing. The delay in symptom exacerbation adds to the confusion, but understanding these nuances can empower those affected. Tune in for insightful tools to improve quality of life!

Send us a textOn 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: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