Such a good read on what it's like to care for people with a chronic and debilitating illness
#pwLC #pwME #LongCovid #LivingWithLongCovid #NEISvoid #disability

One of the many great paragraphs:
"I do accept that this is my role now— I’m a writer and I’m a carer—but no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening."

https://rob-obrien.medium.com/dont-forget-about-the-me-cfs-long-covid-carers-we-need-help-49f33b297096

"Many people with long Covid have a lower health-related quality of life than people with some advanced cancers, research suggests."

https://www.theguardian.com/society/2023/jun/08/long-covid-impact-quality-of-life-cancer-study

#LivingWithLongCovid #LongCovid

So many of those types of tired perfectly describe #LivingWithLongCovid #LongCovid
Today I'm more of a existentially tired but quite often it's a stupid tired or skinned alive tired (when in PEM)
https://www.theguardian.com/commentisfree/2023/may/21/hyperfatigue-is-the-big-thing-in-2023-but-what-we-really-need-are-50-words-for-tired

Lovely article by Monica Parker on why our pursuit of happiness is leading us astray and that we might want to look for wonder instead

Some good lessons for #LivingWithLongCovid #LongCovid too:
"In essence, by holding both positive and negative thoughts in our mind simultaneously, we can better metabolize traumatic experiences and make meaning of them."

https://edition.cnn.com/2023/05/09/opinions/sense-of-wonder-instead-of-pursuit-of-happiness-parker/index.html

#LivingWithLongCovid be like...

#sloth #monkeys #LondonZoo
🦥
#LongCovid

#LivingWithLongCovid means that I'm stuck at home much more than I would like to.
Going places tires me out really quickly - my brain seems hard at work filtering out background noises and taking executive decisions. Sounds, lights, movements all cost me incredible amounts of energy, so classic #LongCovid brain fog.
The excellent Atlantic article by Ed Yong described it really well:
https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/

Raising awareness for what it means to be #LivingWithLongCovid beyond #LongCovidAwarenessDay

Here's my #LongCovid story, captured by the lovely people at the British Heart Foundation, photographs by the talented Frederick Iyeh

https://www.bhf.org.uk/informationsupport/heart-matters-magazine/my-story/living-with-long-covid-kerstin-sailer

#LivingWithLongCovid means you can never fully enjoy being with people.
I've seen a friend in a coffee shop on Tuesday and watched my daughter perform dance and steel pans at her school show yesterday. Both have left me knackered. The combination of getting there, masking, excitement and noise are still often too much.
16 months into my #LongCovid journey and I have a long way to go

@aarnegranlund I continue to live with precautions as carefully as I can through the winter and tend to relax more in the spring when winter bugs are reduced.

Still haven’t found the right sweet spot for relaxing.

#LivingWithLongCovid

RT @pipp100@twitter.com

@tigresseleanor@twitter.com The #LivingWithCovid future of rose tinted & it's a wonderful life post #Covid19Pandemic #Johnsons had another of his disastrous ideas to keep him & the #Tories popular was #FreedonDay19thJuly2021. Since then #Covid19 many many thousands are dead or #LivingWithLongCovid

🐦🔗: https://twitter.com/pipp100/status/1616604870215143425

This Chinese proverb by philosopher Xunzi, sent to me by my Chinese PhD candidate perfectly expresses the lived experience of my #LivingWithLongCovid healing journey.

It's a reminder to myself that all the small steps I've made will some day result in a thousand-mile journey - which might lead me back to China, where I've taken the photo of the #GreatWall during my 2019 conference visit to Beijing.

Wishing my fellow #LongCovid travellers patience and stamina on their journeys.

Sharing my #LongCovid "All Snakes, no Ladders" board game drawing again due to current events...
In my own personal #LivingWithLongCovid game I unfortunately landed on square 93. I got reinfected with Covid, ironically caught from friends I was staying with to attend a specialist #longCovid clinic in Germany.
It feels very much like #NewYearsEve 2021 - a pile of bricks lying on my chest and this daunting feeling that the #NewYear is not going to be easy.

Wishing everyone a #Christmas filled with joy, happiness and respect.
If you or someone you know is (or might be) #LivingWithLongCovid please ask them how their day is going, whether they have energy left for #festive fun, and remind them it's okay to #rest.
Believe me - it's the hardest thing to step away from friends and family having fun to lie in bed alone so that you can catch your breath.
So let's all be gentle and kind to one another. You don't know what someone is carrying
#longCovid

The sidewalks in my North #London neighbourhood are still treacherously slippy. Taking tiny steps we all waddle like penguins across the ice.
I like the way it slows everyone down - so my sloth-like #longCovid walking speed doesn't stick out right now.
#SilverLinings #LivingWithLongCovid

A much better day today in #LivingWithLongCovid land. Walking home from my acupuncture session, the #winter wonderland of Highgate Wood left me awestruck. Cold feet but happy

#LivingWithLongCovid means taking pills as if I was several decades older. Before #longCovid I took no daily medication. Now I'm on seven different prescriptions plus various supplements

#LivingWithLongCovid
TFW you're walking half a mile to your child's school to watch their nativity play, then walking back, and afterwards being congratulated by your Garmin for your "exercise" and awarded 54 intensity minutes.
Oh hello tachycardia. 🤦‍♀️
With #longCovid everything feels ten times as hard.

What it means to be #LivingWithLongCovid - a constant battle to juggle one need against the other.

A group of friends I haven't seen in a year were meeting up yesterday. It wasn't my best day but I was keen to see them. The last time everyone met up I was in A&E due to a chest pain episode. I finally decided to go and it was lovely.

Paying today with a murderous headache, chest pains and endless fatigue as soon as I left the bed.

#ChronicIllness #pwLC #NEISvoid #longCovid

Today's #LivingWithLongCovid thought coincides with #FensterFreitag
I've been off work for more than a year now and while I'm lucky enough to be able to leave the house, it quickly exhausts me, so I do it much less often.
Therefore, the view out of my own windows has become so much more important in my #longCovid life.

What it means to be #LivingWithLongCovid ...
For the past 12 months I've sat down every evening to write down my symptoms and activities of the day.
As a result I've become better at #pacing and understanding triggers to avoid post exertional fatigue - managing a #ChronicIllness is rather time consuming