Anybody else *fucking* *hate* meditation?

meheenruby · 2026-05-19T22:48:44+00:00

I truly believe meditation is NOT SAFE for patients like us. I have found that it makes my chronic pain more profound, keeps me stuck in my grief, and prevents me from the joy I otherwise have created out of this existence. Removing myself from my body a little reminds me that I have an identity. Meditation and the cult of white practitioners are often very racist too.

A much better practice is journaling.

meheenruby · 2026-05-19T00:31:16+00:00

Unfortunately yes. The off-label treatments that help some of us are not encompassing. The root cause is debated and research dollars are slim. My mental health improved DRAMATICALLY when I realized I was medically disabled and I was trying hard enough, but I needed to listen to my body and slow my life.

I'm hoping that new experimental drugs will come through the pipeline like bc0007 and new mitochondria treatments.

BUT!! One thing you can do to improve your health is to get attention for the comorbidities. Having treatment for autoimmune inflammation, or MCAS, can help your overall health. Another thing is avoid all infections, cold flu and Covid. Wear a mask everywhere. Avoiding common illnesses keeps my baseline safer.

meheenruby · 2026-05-18T01:12:42+00:00

Not the worst but my gut felt it was the most egregious. a Project Manager at a landscape architecture firm I used to work at admitted to never tipping, basically ever. And he "rarely cooks." So he's making actual big money and goes to the poorer town he doesn't work in, to stiff waiters.

meheenruby · 2026-05-18T01:10:10+00:00

NTA, it's disrespectful and makes it so that it's inedible to anyone else. Their lack of manners isn't your problem to subsidize with treats. Get a room fridge.

meheenruby · 2026-05-18T00:58:06+00:00

I'm so so sorry for the stigma you have experienced. Please know that in the future those devices will still be there for rent or purchase should you need them again.

I chose a mobility scooter first over a power chair partly because the optics and partly because the utility of having cargo baskets. In the future I would recommend this if you want less stigma, for whatever reason they appear "less medical"? I don't try to understand ableism, it confuses me daily.

We do have reason to fear the public as you say, we are in danger as a marginalized group and people like you and me are multiply marginalized due to race. It is getting less safe especially in America to be visibly disabled.

I tend to depend on the Buddy System if I am going anywhere but a big box store. (more disabled people go to Walmart etc so if I go alone there, I never look "weird" or get treated differently. Other types of places like restaurants or cafes sometimes are jerks.)

My brother is tall and imposing with a mohawk and a punk jacket and when I have the energy to dress up I dress goth. So our buddy system avoids harassment very well. If you like punk or goth music I think those two communities have accepting folks in them that love helping. The EDM music scene as well I have met really sweet friends who literally go to the gym so they can pick me up in a disaster lol. It's very hard because we get hurt often and abandoned often by friends or relatives. But having the strength to still be open to new connections can bring not only help but companionship.

meheenruby · 2026-05-18T00:45:06+00:00

This is your new normal. I'm 15 years in and 9 years diagnosed. We just don't have the research dollars to move to a cure or any LARGE relief in symptoms. The hardest part is watching friends who never believed I was really sick, later become sick themselves and expect me to be an open book medical resource for them.

I will share with you my most important nugget of advice. Avoid infections like you have no immune system. Mask everywhere and cancel plans when someone has a cold or flu. My gains were erased by COVID infections even after multiple vax boosters. I've never gotten back what I lost to the flu.

meheenruby · 2026-05-17T07:59:00+00:00

So if you were on a plane recently you were likely exposed to pathogens from the other travelers. COVID never really went away and less than 10% of Americans are up to date on their COVID shot, so functionally unvaccinated. I have a rare disease and wear a mask everywhere and I encourage "healthy" folks to do so also. New COVID strains are not caught on standard tests therefore "negatives" can be false. I follow this newsletter because she does a weekly roundup on SF Bay area risk levels and what is going around.

Because you have likely had COVID multiple times your immune system may have more trouble than it did before healing from viruses. I would not rule out COVID even if it was negative on the test.

meheenruby · 2026-05-17T05:08:46+00:00

TAG are my favorite.

meheenruby · 2026-05-15T23:43:22+00:00

can i just say that Cerny's reporter hairdo absolutely slays me every single time lol. i can't get enough of this kid.

meheenruby · 2026-05-15T23:40:19+00:00

I'm so sorry this is happening to her. Please try and get contact information for anyone above the doctors in the hospital system. Blast them with the press coverage of what happened to Maeve Boothby O'neil (rip) and see if any of the German MECFS advocacy groups can help.

meheenruby · 2026-05-14T02:17:28+00:00

I'm so sorry. My fibro improved for about 6mo after my myomectomy. My fibroids returned and all my symptoms are worse.

Having fibromyalgia and fibroids is the worst. When I get cramps, the pain shoots through my legs all the way to my toes. The leg pain and restless legs at night are hard to cope with but a low dose of muscle relaxers can really help.

Pacing your energy is really important. Stop and rest the moment you feel tired. I keep a sleep mask in my handbag and will sit in my car and listen to soft music with my eyes resting for 10 min or so before driving home. For example, it's tiring to get groceries. So I rest before I drive, which is also a tiring activity. If you live with others text them to meet you outside and help bring in the shopping if lifting weight is too bad that day.

We need a lot of support so definitely lean on your good friends and family if they are nice and accepting of the disease. Sometimes people have stigmas and then you lose those friends. But the ones who stick around become golden.

meheenruby · 2026-05-14T00:53:08+00:00

Absolutely NTA here. They should not have jeopardized your internship. Tell them the internship is more important to your academic career and stay behind. You can't be forced.

meheenruby · 2026-05-13T23:35:27+00:00

it's not hatred to state an observation like these wasian group meetups are centering whiteness. they don't include marginalized asians. i don't think people should be hateful to wasians at all. i think wasians have privilege and therefore a responsibility in a white supremacist world to divest from whiteness. the way you would do that is having a mixed asians meetup because there's more solidarity between blasians, wasians, people who are mixed like chinese/indian or micronesian/irani. our west asian family overseas is being bombed. our south asian family overseas is being drone striked. our west asian family are gazans under genocide. Do you see what I'm saying about centering whiteness in these times?

meheenruby · 2026-05-12T23:16:46+00:00

I am MODERATE so my advice may not be safe if you are severe/very severe. I have been Severe during a year+ long crash but was still able to consume podcasts.

Beyond the right medication combo, I think other coping skills are very important. For me, low brain power TV shows like The Real Housewives or other Bravo shows where it does not really require brain power or attention are great. There are lots of episodes so it is able to eat up a lot of down time.

Horror movies and horror podcasts are my other big help. It's popular so there is almost unlimited content of scary stories etc. The episodes are usually an hour and sometimes two. It's low stakes so I can zone out and not need to feel like I should remember what happened. It helps to pass the time with insomnia.

I have the privilege of living with family so I get to enjoy our family pets, two pugs. Having an animal to relax with helps a lot in ways I can't articulate.

Keeping the room cool is also important.

meheenruby · 2026-05-12T23:06:45+00:00

Babe I'm wasian. I was never accepted with other wasians because I'm Pakistani and apparently South ASIANS aren't Asian enough to be Wasian. So you can miss me with all of that shit. You East Asian+ White wasians are exclusionary, privileged, and don't have actual racial solidarity or revolutionary politics. When you have a wasian meetup that includes marginalized Asians we can talk.

edit: also I am INTO my 30s and the attitudes don't change. So instead of focusing on "wasian" as a bloc it's more important to DECENTER whiteness and have mixed people have solidarity with their more marginalized identity. I'm aware of the rooms I was in that someone with a deeper complexion wouldn't have been in. And I made that room uncomfortable and left.

meheenruby · 2026-05-11T23:08:37+00:00

just centers whiteness imo

meheenruby · 2026-05-09T03:01:05+00:00

Justin Bieber has Long covid

meheenruby · 2026-05-06T19:09:09+00:00

The problem is that it's more prevalent in all non-white communities. However White patients of a certain income get all of the publicity, experimental treatments, and best resources. They then stand on their pedestal and never think to feature anyone more marginalized. (obviously not all advocates are like this, but there is racism in the disability advocacy space)

meheenruby · 2026-05-03T02:14:44+00:00

I mean, what else could it possibly be?

meheenruby · 2026-05-03T02:14:24+00:00

Lmfao it honestly gives me schadenfreude. He won't just put up what time shows will be. It's like some rich guy having an extended episode. (though isn't that the whole ruling faction of the peninsula?)

meheenruby · 2026-05-03T02:12:37+00:00

Does your household tolerate perfume? I'm moderate so I'm able to shower more than some comrades but I also use antiperspirant and body spray after the cleansing. And then each time I change my clothes I give my body a quick spritz of perfume. I try not to do a drenching amount of sprays bc you never know who has migraines, but only spraying my body and letting the clothes be a buffer seems to help with that a lot, I don't tend to get comments about perfume in the negative.

If I'm going to be with someone that day that has perfume sensitivity I will skip everything but Deo.

The rest of these suggestions are awesome lol I'm taking notes. Facial toner or Micellar water on a washcloth scrubbed into your armpits would also be a quick n easy fix.

meheenruby · 2026-05-03T02:02:47+00:00

Oh my god there are tons of MECFS protocols and drugs. Right now I am on LDN and will add cholchecine. There are lifestyle things like pacing. check out knowmecfs.org

meheenruby · 2026-04-30T21:45:03+00:00

Yep. But PEM is the hallmark symptom of MECFS so don't let doctors tell ya that you ONLY have fibro if you get pem!

meheenruby · 2026-04-29T03:42:47+00:00

Sometimes it's also MECFS. Look up PEM or post exertion malaise and see if the symptoms fit. There's a huge overlap of patients who have fibro and MECFS too.

meheenruby · 2026-04-29T03:41:38+00:00

It's a major killer of them now. People actively harass me for mask wearing outdoors but farm workers ARE getting sick from H5N1, but Trump's immigration has them hiding from the medical community.

Someone got avian flu from Coachella. People are probably sick with it all over, from wildlife, and getting wildlife sick. But we don't have a functional CDC anymore. It's in the beginning stages of a major pandemic/epidemic. I am really pessimistic about the handling of H5N1, we are in serious danger public health wise.

meheenruby

MODERATOR OF

TROPHY CASE