#cfs

[myalgicencephalomyelitiscfstom]

While views aren’t the only metric to assess the value of social media output, sometimes it’s useful to reach a significant number of people.

So I’m pleased that the extra time/energy I have been putting into my FB page is yielding results.

[lovescats128]

Enriching Your Life!

Good day, my friends. It is a scorching 92 degrees her in the metropolitan Chicago area. It has been hot all week long, and they are calling for more of the same for the next couple of days, which means I have been looking for things to do indoors. This got me to thinking; I need something new in my life. I went through this very same thing almost two years ago when I took a hiatus from blogging.…

[ledsastray]

I had this clarity today

the official medicine take on CFS/ME is there is no treatment - but there is

CONVALESCENT OFFLOADING

this isn't a cure but it is a treatment

and it is only available to people with money and or people who will do unpaid labour for them

What would it look like (first thoughts):

An income to do less - on prescription - not something you have to expend more energy on obtaining than it restores

Personal Assistance - someone you can delegate to, like writing correspondence, to working stuff out and planning - basically to offload thinking energy so you can reserve that for autonomy and choice

Food - a meal service, nutrition really matters for CFS/ME but you have to eat what you can get

OT which includes the solution - like if you need a wheelchair it comes with getting that sorted - if you need to learn progressive muscle relaxation it comes with someone to teach you.

with CFS/ME you are beyond self care - like that is the point - you have gone well beyond your personal resources for way too long - SO simply REPLACE THE FUCKING RESOURCES

I live within UK NHS but I don't know a country that does this.

Before the age of antibiotics and big pharma breakthroughs people in similar situations to CFS/ME were a regular part of 'normal' nursing. TB for example, people who had survived serious illness (and maybe had what we now call CFS or post viral fatigue) was expected. Of course money and familial support mattered in what care you got but it wasn't EXPECTED that medicine could treat the everyday unfortunate consequences of Ruined Health - you were not part of this weird and stigmatised 'if nobody can medically™️ fix it maybe it isn't even real' 'god these people are so pathetic they can't even get a proper Condition'

And it would not even need to be ideal - because any load off is less chance of PEM and less chance of PEM means more chance of a stable or increasingly positive baseline

I haven't seen any trials of what I'm calling Convalescent Offloading (I'm using the word convalescent not to present a temporary intervention - it would be followed by Baseline Maintenance Care also on prescription) but as a first line treatment and the treatment after a crash). LMK is anyone has seen this done and evaluated - I'm basing my ideas on CFS pathophysiology but also similar ideas of Offloading for ppl affected by chronic poverty (I mean typically chronic/ multiple to an area or community)

[gagajolie123]

This summer has been one hell of a ride... a very slow, boring, sad, solitaire ride.

Context: I'm pretty sure I have CFS due to covid.

I have been sleeping non stop since April and ho boy am I bored.

Many people left my life... Just decided to completely vanish and honestly? Good riddance.

What sucks tho is telling others how I'm not caring because of it or how because I'm sick I'm lazy.

Bitch, first of all it's my nap time so you're lucky I'm too tired to punch you and 2- holy spirit of a smile there are so many people who disagrees with you buddy.

Anyway I'm slowly getting by.

[pixiewithapapercut]

So, lately I've been so tired that each day I play a game of 'how actually unwell do I look today'.

So, today, on a sliding scale of iZombie to I Am Legend, I'd say I'm sitting at whatever is one step worse than Warm Bodies.

Yay. I am having *so* much fun!

[umflowers]

god i am so fucking sick of waking up for the day and feeling The Pull to go back to sleep within 20 minutes. every single day.