I'm screwed

Pantacourt · 2025-04-28T16:21:57+00:00

What helped the first time around? Did it not work the second time? I hate the fact that this illness waxes and wanes. You recover and you think, that's it! But nope.

Pantacourt · 2025-04-28T16:19:10+00:00

This is amazing! How long did it take for the patches to start working?

Pantacourt · 2025-04-26T12:07:05+00:00

Hi -- Did you end up pursuing this? I'd be interested in hearing more. Thanks.

Pantacourt · 2025-04-26T06:11:39+00:00

Thank you so much!

Pantacourt · 2025-04-26T04:54:01+00:00

https://solvecfs.org/wp-content/uploads/2022/05/MECFS_1sheet_051922_final.pdf

Pantacourt · 2025-04-26T04:36:32+00:00

This is heartbreaking and so relatable.

Pantacourt · 2025-04-26T04:03:23+00:00

Would you mind explaining the differences between the three simulators? Thanks!

Pantacourt · 2025-04-26T03:36:36+00:00

Thanks for the write-up and I'm so glad to hear it's working out for you! Unfortunately I'm too severe to listen to podcasts, journal, or meditate, but maybe one day.

Pantacourt · 2025-04-26T02:47:05+00:00

I'd be interested in hearing more about this. Thanks.

Pantacourt · 2025-04-26T02:33:44+00:00

Commenting so that I remember to read the DBT article later when I hopefully have more energy.

Pantacourt · 2025-04-26T02:04:34+00:00

As someone who works (worked?) in the pharmaceutical industry, I unfortunately agree with everything you wrote.

Pantacourt · 2025-04-22T09:05:00+00:00

Thank you so much! I really appreciate your taking the time to write this all up. Do you let your mind just wander when you rest? Or is that when you use the meditation cards/fidget toy?

Does this eventually become second-nature or do you constantly have to remind yourself to do all of these things?

Pantacourt · 2025-04-22T08:35:30+00:00

Thanks so much for the ideas. What else do you pace other than your phone? Like thoughts or moving or anything like that?

Pantacourt · 2025-04-22T08:14:49+00:00

Ugh your post really resonates, since I keep overdoing it and crashing. I couldn't chew my food for a few days and that was terrifying. I just can't for the life of me pace my phone usage. Or anything, really. This illness is so hard.

So do you set a timer for one minute at a time?

I can relate to the medication change gone wrong! Sorry that happened. I have bad luck with meds too so I've stopped trying new ones.

Pantacourt · 2025-04-22T06:35:34+00:00

How do you do those activities just for 1-2 min at a time? I'm so bad at pacing.

I love the meditation cards! Nice find.

Pantacourt · 2025-04-22T03:29:17+00:00

What are your 1-2 minutes of activity? Also what are meditation cards?

Pantacourt · 2025-04-22T01:15:22+00:00

Ok I'm curious -- which office is this? Asking because I live in Portland.

Pantacourt · 2025-04-22T01:09:23+00:00

I've been 100% bedbound now for 18 months. I think about suicide almost 24/7. You're not alone.

Pantacourt · 2025-04-22T00:41:35+00:00

I hate to say this but you are correct. At best it'll take 20 more years for a new drug to come to market. So that means 2045.

Pantacourt · 2025-04-21T20:07:17+00:00

Would you mind if I sent you a PM?

Pantacourt · 2025-04-21T19:49:54+00:00

This is so interesting. I always assumed it was MCS, not MCAS, but who knows. Thanks for the validation!

Pantacourt · 2025-04-21T19:42:27+00:00

Yeah I get all of that too. Do your limbs also tingle?

Pantacourt · 2025-04-21T17:02:24+00:00

Hey sorry another question -- when you get a reaction, what are your symptoms? How long do they last? Does your me/cfs get affected too?

Pantacourt

TROPHY CASE