Advice re talking?

[Tella]

hi can someone help me how not to crash after even little talking? well I can talk much more now (used to be a few words) and I believe gradual exposure helps. but it's still a massive energy expenditure for me, and while talking I can sometimes go into a mini crash and I will push through it but not feel well afterwards. you know, you start feeling weak and like there's something in your throat, limbs go limp....it's bizarre really. but I have to speak to someone now for a few hours twice a week while sitting up etc so have to do all I can to avoid crashes and to get used to this new schedule! thanks a lot

 

[Wishful]

hi can someone help me how not to crash after even little talking?

Look for alternatives to talking? If it's just the vocalization, then a text-to-speech device would work. If it's the cognitive effort of forming thoughts and words, then that probably wouldn't help.

Maybe a t-shirt or sign saying "Talking totally wrecks me, so I'm not talking".

Maybe there is a treatment that would allow you to talk without crashing, the way cumin blocked my PEM, but finding it would be a matter of stumbling across it by accident. Since we don't know what causes such ME symptoms, we can't even figure out what things we should try first.

 

[Tella]

Look for alternatives to talking? If it's just the vocalization, then a text-to-speech device would work. If it's the cognitive effort of forming thoughts and words, then that probably wouldn't help.

Maybe a t-shirt or sign saying "Talking totally wrecks me, so I'm not talking".

Maybe there is a treatment that would allow you to talk without crashing, the way cumin blocked my PEM, but finding it would be a matter of stumbling across it by accident. Since we don't know what causes such ME symptoms, we can't even figure out what things we should try first.

Thanks! I have no choice but to talk sadly.
how much and what type of cumin do you take? Did it remove PEM?

 

[Wishful]

how much and what type of cumin do you take? Did it remove PEM?

Ordinary cumin (cumin cyminum): the spice used in curries (and other foods). The thread about it is below. A level tsp blocked my PEM for 3 days each time, and eventually I no longer needed the cumin and no longer get PEM. It was a totally amazing treatment for me, but only a few other people have reported it working for them. Still, it's cheap and safe, and maybe you'll be one of the lucky ones that it works for.

https://forums.phoenixrising.me/threads/cumin-cuminum-cyminum-possible-pem-blocker.56232/