The Kings Fund: Facing up to long Covid (Sep 2022) blog

[Haveyoutriedyoga]

https://www.kingsfund.org.uk/blog/2...=Button_BlogJM&dm_i=21A8,81AMT,8RKPI6,WVL16,1

Facing up to Long Covid
The Kings fund blog
27 September 2022
5-minute read

Introduction

Long Covid is politically problematic, medically uncertain, and personally scary. It is too easy to look away.

In media narratives this summer the Covid-19 pandemic was eclipsed by the cost of living and climate crises. But in practice these crises co-exist and interact. Long Covid makes heatwaves and price hikes a whole lot harder to bear. 

I was healthy, triple vaxed, and have been down with long Covid since February 2022. This is not a pity blog. It’s me learning to speak from this new place in a moment when I can. To tell you something about what it’s like here. And to ask you not to look away from long Covid, this ‘mass disabling event’, which is affecting 2 million people in the UK, and will likely have a direct impact on hundreds of thousands more this winter. 

I have the neurological cluster of long Covid symptoms. Headaches, fatigue, dizziness, brain fog and more. At my worst, I have been bedbound for months at a time. I’m currently enjoying a good hour or two some days, though still mostly unable to leave the house, read a book, listen to music or podcasts or look at anything on a screen bigger than my phone. 

 Here’s five things I’ve learnt from my first six months of long Covid. 

• We need fifty words for fatigue.  
• How I can write this blog but can’t remember my kids’ names.
• Invisibility adds insult to injury.
• Each long Covid case has an impact on a whole system of others.
• Finding a way to live with long Covid (and what not to say to your friends with long Covid).

 

[Hutan]

A good quick read. I didn't notice any stepping on Long Covid or ME/CFS communication land mines - the writer seems to get things. She acknowledges ME/CFS.

Working out how many ‘spoons’ (units of energy) you have for the next hour or day, and what each activity will cost you, is a constant feature of trying to live with fatigue. People with ME/chronic fatigue syndrome are veterans of this work. 

I thought this following point was important. Because post-Covid-19 ME/CFS seems to predominantly hit people of working age, there's the impact to society of lost economic activity. Because it seems to predominantly hit women, there's also an enormous impact on all of the things held together by the unpaid work of women.

My illness has had a huge impact on the lives of my kids, my partner, our parents. It is frightening, and desperately impractical. 

I’m typical of a UK long Covid sufferer, being a woman aged 35–59. As well as being paid workers, we are *the* key category of unpaid caregivers for kids and ageing parents. When we go down, whole social systems become strained. 

When you see statistics for long Covid sufferers, imagine for each one this additional cluster of dependents and relations who feel the impact. A new set of needs which may now call on health and care services. Not to mention the lost economic activity already apparently showing up in national statistics.

 

[bobbler]

Interesting read, particularly as her job is in health policy.

All pretty much makes sense and she does give a nod to those with ME/CFS as being 'veterans' of the 'managing on limited 'spoons'' (though that was just one word and not a heavy feature of the writing/mention)

Finishes with:
"I have my first hospital appointment this month. I’m not sure what to hope for from my clinician. Curiosity, humility and companionship, perhaps. To feel ‘seen’. To look at this thing head on, and to try to find a way through it together.  "

I know the offering across different LC clinics is very mixed. It will be interesting to see how this progresses (does long covid still have a chance of recovery at 6months in? I'm remembering Garner's timeline, but he was snorkelling by then wasn't he so...), as I'm sure certain ones might have honed the 'feeling seen' bit without necessarily having honed the curiosity or humility part in reality. And I guess given the lottery of life we don't know whether what she will get will be a 'match'.