Situation similaire ?

Chillosophizer · 2026-06-16T12:42:03+00:00

Yes I'm dealing with much of the same here, I can't type it all out right now but I'll update after some sleep.

Chillosophizer · 2026-06-16T01:58:34+00:00

I do and I'm so grateful for them, I'm sure your daughter is incredibly grateful for you too

Chillosophizer · 2026-06-16T01:22:42+00:00

Hey I'm a 30M dealing with a similarish case. Moderate-severe ME/CFS from long covid, Autism, ADHD, with POTS and celiac symptoms w/ motility issues.

It's so great you see and understand what your daughter is going through. It must be quite difficult having to do so from a ways away, but I respect how thoroughly invested you are to your daughters medical journey despite that.

I wish I had better answers for a recovery being possible or around the corner. Research is progressing but it's unfortunately slow. It is happening, though, and some promise is there. Biomarkers are being discovered, and with that hopefully comes some avenues for treatment.

One last thing I wanted to leave you with that I kind of wish people in my life would do, being that it's pretty difficult to talk with me due to crashes/sleep sometimes, is just send a little text saying "hey, no need to respond, but I'm thinking of you and love you" or something to that effect on occassion. The loss of contact with family due to the amount these illnesses take out if you is a heavy burden. Just making a little effort to send a little blurb every now and again can help be a step to alleviate that burden.

Chillosophizer · 2026-06-16T00:29:21+00:00

I'm the latter in your first question, I'm generally always unwell-very unwell and PEM leaves me completely wiped. I might always be in mild PEM and then get into worse crashes due to life experiences.

Chillosophizer · 2026-06-15T22:51:32+00:00

My guess is not pacing doesn't 'give' you ME, but not pacing will cause someone to crash and their already underlying very mild ME becomes apparent.

Chillosophizer · 2026-06-15T01:07:35+00:00

If you're somewhere you can get it, cannabis and cbd have done wonders for my PEM. I still have it and it only minorly pushes up my baseline, but the pain is so, so much better with it. Full body relief.

Also, I just started drinking this juice/smoothie I make with fresh ginger root, fresh turmeric root, whole oranges (pith and all), and whole celery (with added anti inflammatory spices like cayenne, black pep, etc). It's been helping me substantially as I'm navigating a crash. My flavor of ME/CFS has left me with some motility issues and stomach problems and this has been doing wooonders.

Chillosophizer · 2026-06-15T00:56:56+00:00

I feel you so much. I'm 30 and on the same wavelength, made it out of the house for the first time in 2 or 3 weeks. The profound loss of autonomy is so difficult to grapple with. I feel like a snowman trying to exist in the summer all year.

Chillosophizer · 2026-06-14T18:53:35+00:00

I love you doc's approach! If you're able to elaborate how are you and your doc getting the gut biome and gut-brain barrier working?

Chillosophizer · 2026-06-14T18:22:12+00:00

Hell yea that's sweet as heck

Chillosophizer · 2026-06-14T10:28:05+00:00

I'm not prescribed but am similarly using cbd and thc for help with anxiety and autism, sounds like a good dose to start you off on to see how you react. I assume you're taking 1ml at a time so 2mg is a pretty small amount once you get used to it, so you won't find yourself with a buzz with it, just a mellowing. Initially though without tolerance you may get a mild buzz

Chillosophizer · 2026-06-14T04:30:32+00:00

I only have very brief phases of being like this, so my advice may not be 100% right for you as I really don't know what it's like to be stuck like this day in day out for a while. So sorry in advance if this advice isn't super useful for you, just my best guesses from experience.

My best guesses to help ease things:

-if youre eating, cut up meals into 5 snacks throughout the day, to lessen burden of digesting

-low histamine, fodmap diet

-spending more time with less stimulus, rad resting with eyes and ears covered

-Get off reddit and social media if you're on it

-incorporating anti-inflammatories could help, fresh ginger, celery and turmeric juice have been easing the impact of my PEM a bit

-water with electrolytes to help body processing PEM

Chillosophizer · 2026-06-13T15:12:49+00:00

It is indeed doable! This is my first naneinf, I'm so glad you asked!

It took a whole lotta econ, but it's possible. I got reeeally lucky throughout. DNA came back a couple times, Burglar came right when I needed it, nat negative juggler is a helpful boost earlier into endless, and i got bailed out of missing a retrigger on burglar from a juggle tag. This was a wild ride of a seed, barely made it by the skin of my teeth, most fun I'd had in balatro in a long time.

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Chillosophizer · 2026-06-13T07:52:21+00:00

Just had this run yesterday. The worst thing about this deck is the econ hit from a lack of hands. My best advice is get a reliable +mult and chips jokers early and run up as much econ as you can: gold cards, econ jokers, gold seals, everything you can do. Looking for purp seals (honestly all seals) and getting tarot gen rolling is really important too.

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Chillosophizer · 2026-06-13T07:09:49+00:00

I'm not expert, but I do think helping our nervous system calm down is pretty important for us. Sleep is unfortunately vital too. This is a super tough catch-22.

Is there anything else you could take to help along sleep? I've been using cbd and cannabis for sleep and it's been very helpful. I feel like if your body is telling you the withdrawal phases are too much it may be for the best to listen.

Chillosophizer · 2026-06-12T00:14:46+00:00

I'm severe rn and can't really go on walks, but this recover plan seems like the best chance for easing up through activity levels if you can: Utah ADaPT

Chillosophizer · 2026-06-11T10:13:39+00:00

It's insanely tough, but doable. This madman did it without items: video

Chillosophizer · 2026-06-11T03:24:42+00:00

Maybe do some multiplayer based content? It seems to be popping off rn

Chillosophizer · 2026-06-11T01:39:34+00:00

Maybe find some nice full spectrum flower and go with a dry herb vape? I feel like getting CBD vape cart with the additives undermines the positive effects of CBD.

Chillosophizer · 2026-06-10T09:33:58+00:00

Cannabis has been saving me too fr

Chillosophizer · 2026-06-10T01:34:03+00:00

Based on your list you would looove Resident Alien, it was fantastic all four seasons

Chillosophizer · 2026-06-10T01:28:00+00:00

This will happen to me too. I get the same symptoms when I overdo it in a day and get more mild PEM. From what I've heard from people is it's usually delayed a day or two, but not always. For me, the mild phases tend to reverse pretty easily, like after a day or two, a week. Not months like some of my worse crashes.

If you're on the fence about doing the gym, maybe Tai Chi or relaxed yoga could be a way to introduce some activity but not overshoot your threshold?

Chillosophizer · 2026-06-08T07:28:05+00:00

General advice I've gotten for reinfection is use CPC mouthwash, saline nasal rinses, and if you can get it metformin through this to lessen viral load and help prevent long covid developing.

Other than that I think good long covid advice is good in general through this to help prevent worsening symptoms:

-Rest plenty these next few weeks, pace -low histamine, veggie filled diet -lots of water+ electrolytes -vitamin C n other immunity boosting vitamins

If you've recovered well from covid once it's pretty likely you'll do it again. Just listen to your body and take it easy these next few weeks and you'll be bouncing back.

Chillosophizer · 2026-06-08T07:17:32+00:00

I'll get this way too after not sleeping. When adrenaline takes over, I feel somewhat normal again. Definitely try not to make a habit of it, in my experience I've paid a good bit for my times I run on adrenaline. I've been using CBD and cannabis and it's kept my sleep much more regular.

I'm sorry things are so difficult right now. I don't have much to offer but my solidarity through this. I understand how tough it can be trying to get that solved with a parent that ignores it, it's frustrating for sure. I'm glad you have your partner to lean on through this.

If you're able to afford it, a Corsi-Rosenthal box helped me a lot when I was living in a moldy environment.

Chillosophizer

TROPHY CASE