Lisa Lewis

I most definitely wasn’t glorifying exhaustion from chronic illness. The act of Radical Rest is not ltd to those of us who are suffering from chronic conditions or post viral fatigue etc. I was using the image as a reminder for EVERYONE to practice self care. Unfortunately, I didn’t…

I have absolutely no idea what you’re meaning is here. Maybe it’s my brain fog but…

2025 will be my year of Radical Rest 🤩
#LongCovid #PEM #CFS #postviralfatigue

Just to bust this myth: PEM is *not* just disproportionate fatigue. This is a huge misconception. PEM/PENE is a systemic, whole body response to over exertion, that involves inflammation, muscle damage, neuroinflammation, immune activation and metabolic dysfunction. It’s never just fatigue #MEcfs

#ADHD

An observation that only someone with chronic fatigue will understand:-

That internal debate monologue in the shower as to whether or not it is worth using an extra pace point / spoon by shaving armpits and legs 🤣 🪒 #LongCovid

Photo of a border collie dog

My constant companion - he’s with me 24/7 and he doesn’t care if I haven’t showered in a week 🥰
#LongCovid

I’m not looking for sympathy since this is my choice, but this is the reality of long term chronic fatigue
2/2

Graph showing pace points / heart rate monitoring for various tasks

I truly value my trustee role for many reasons including those of self worth, making a contribution to society, and mental health etc but this is the price that I have to pay for the cognitive effort involved…

That’s a third of my daily pace points used up in a two hour online meeting.
1/2

Quote by Katherine May “This isn’t about getting you fixed,” he said. “This is about you living the best life you can with the parameters that you have”

My personal mantra in order to ensure my acceptance of my current situation / condition.
#LongCovid #CFS #myalgicencephalomyelitis #ME

My awesome recovery tribe.
Daily classes provide routine, structure and an online connection to the most amazing support community
#LongCovid #LongCovidRecovery #wellbeing

www.360mindbodysoul.co.uk

That’s a really interesting observation and now you’ve said it it makes total sense. Good job I don’t eat before I shower - can’t imagine how many more pace points I would waste 😳

Visible - Activity tracking for Long Covid and ME/CFS Visible provides the tools you need to understand your energy-limiting condition. Use data to pace your activity, manage your symptoms, and help move science forward.

www.makevisible.com

Yes! It’s a free app, or you can additionally purchase & subscribe to the wearable monitoring device - which is what I have just started wearing

I know! I finally have validation that it’s “not in my head” 🥳

Graph showing activity pace points in the Visible app. Tracking heart rate for chronic illness

Having a shower & washing my hair took 21 mins & used up 5.4 of my total 27 daily pace points.

That’s 20% of my daily total in 21 mins . Which means I’m basically f*cked for the rest of the day since I haven’t even made it downstairs yet

This is what life with Long Covid / CFS / ME looks like…

I was thinking more along the lines of how you explain to someone who isn’t suffering from PEM etc what fatigue is really like. eg when someone who is “healthy” tells you that they are “exhausted” & they don’t understand that when I get out of bed in the am I feel like I’ve already run 2 marathons

Incredible stuff from @jacobcolliermp.bsky.social!

Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡

#ThereForME

I’ve realised that it’s now time to find an alternative word for the chronically debilitating exhaustion experienced with #LongCovid

The word “fatigue” just doesn’t work for me anymore.

There isn’t currently an alternative available, so I’m opening up a debate on inventing a new term…

Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Background and Objectives: Post-exertional malaise (PEM) is the hallmark of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but there has been little effort to quantitate the duration of ...

Reaearch paper on exercise in ME/CFS:

Sedentary people took an average of 2 days to recover, whereas people with ME took an average of 2 weeks.

One person with ME never recovered, even after a year.
#PEM #postexertionalmalaise #ME #CFS #LongCovid

www.mdpi.com/1648-9144/59...

Poem by Victoria Erickson from the book Rhymes & Roads

#selfcare #winter #wellbeing

Thank you!