u/ash_beyond

▲ 57

I'm tempted to go but I'm nervous about getting a nasty flare. I've been doing pretty well recently but I'm still moderate-severe and new environments, light, noise are all tricky. My family and my most useful friends are out of town so I would be going alone with my e-wheelchair.

is anyone on here going to the Berlin demo and maybe willing to help me on site? I would only need someone to walk with me so I can easily get from the U-Bahn Station to the demo and find a spot (and be ready to help me to get back again when needed). I'm on the U5 so can do that part myself.

I could probably manage it all alone but I know this little bit of assistance would help me a lot and not be hard for anyone with a more functional nervous system.

I went to the demo a few years ago and found it really positive to be present and advocating with other people with ME/CFS.

If there's an official channel for this kind of coordination just let me know. I didn't see one and I figure this didn't really need centrality organised. I guess if others want to go to demos together then make a comment below - and mention your city! Viel Kraft!

TLDR - there's a lying-down protest for ME/CFS across Germany this weekend. I'm asking for assistance in Berlin, and suggesting that others coordinate in the comments if they wish (for any city).

Edit: It is Liegend Demo (note the extra 'D' that I missed). And this is their website: https://liegenddemo.de/

u/ash_beyond — 7 days ago
▲ 26

Something you use a lot, and has maybe lasted longer or been more useful than you had expected?

So I'm asking less about cost and more about function I guess.

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u/ash_beyond — 9 days ago
▲ 14

I often find myself repeating nonsense to myself (more than usual) when flaring.

The latest is:

"I'll take 'things that hurt' for $100 please Alex" or

"How about 'stuff that won't get done today' for $200 please Alex"

I know this post is largely nonsense. Sorry for wasting your eyeballs.

reddit.com
u/ash_beyond — 10 days ago