Living with Long covid
This podcast aims to raise awareness of long covid, provide a platform of support, education and the lived experience.My name is Julie, I am a registered nurse in the UK. I became unwell with Covid in May 2020 while working on the front line, during the first wave of the pandemic. Subsequently I live with long covid and POTS ( postural orthostatic tachycardia syndrome). I would like to share my journey and lived experience, the symptoms and how each impacts daily life. I aim to not only consider the physical issues but also the impact this has had mentally and emotionally. It is reported over 2 million people in the UK and an estimated 65 million worldwide, live with long covid. This is huge, and affects every area of a persons life, their family, friendships and work life. Join me and some great guests and let’s Learn, advocate and continue this journey together.
Living with Long covid
Post exertional malaise (PEM)/ Post exertional symptom exacerbation (PESE) Why is it so confusing?
This episode considers PEM/PESE why is it so difficult to understand, manage and avoid? I discuss what PEM/PESE is and how is triggered and what that means to daily life.
I have spoken with many people who find they struggle to manage PEM as they can't understand what it is and what it does to the body. I have struggled with this myself as it seems to be able to occur with no reason.
PEM is triggered from exceeding the energy envelope which can be due to physical, emotional or mental use of energy. I find this makes it a taskmaster, working out what your personal triggers are, the delay in symptom exacerbation can make it confusing to work out at what point PEM was triggered.
I discuss journalling, to identify triggers and using pacing, monitoring symptoms, exacerbation of symptoms can be identified using this method and could be a tool to help avoid PEM. You can download my 4Ps planner from my link tree, the link is below. I hope you find this episode useful, as always please take care.
Today's links:
https://emerge.org.au
https://www.jospt.org - Lessons from myalgic encephalomyelitis/chronic fatigue syndrome for Long Covid: Postexertional symptom exacerbation is an abnormal response to exercise/activity
https://covidcharity.org
https://longcovid.physio
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=livinglongcovidpodcast
Linktree:
https://linktr.ee/joulest
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https://twitter.com/julieTa58407536
Facebook page:
https://www.facebook.com/livingwithlongcovid/
Instagram:
https://www.instagram.com/julie_livingwithlongcovid
Planners:
https://amzn.eu/d/9v9MP4v
Return to work planner:
https://amzn.eu/d/1QVK8zn
Well being planner:
https://amzn.eu/d/a1Safxc