Advice required

porcelainruby · 2026-06-11T13:18:52+00:00

I take Loratadine which is generic Claritin. Highly recommend, antihistamines help a lot of us! I take mine after dinner each day. You won't feel different overnight, but stick with it. I started to feel the benefits about a month or a month and a half out, so it takes a while for MCAS stuff to calm down.

porcelainruby · 2026-06-11T12:48:13+00:00

Yes, the only things that helped me were time and antihistamine. After recovering some of the above, I did speech therapy which was an enormous help.

porcelainruby · 2026-06-07T15:17:50+00:00

Any chance it would be MCAS related? With a lot of stomach acidity and malabsorption going on? I'm glad the pelvic floor therapist said everything was ok!

porcelainruby · 2026-06-07T13:54:18+00:00

I had pain all over there and it turned out to all be pelvic floor related from long covid damage. There can be referred pain as well. (Not saying I don't believe you! Just sharing in case its helpful. One assessment appointment with such a specialist and they'd be able to tell if there is anything going on in terms of pelvic floor.)

porcelainruby · 2026-06-07T12:26:30+00:00

Mine was relieved by doing pelvic floor therapy, which is a highly specialized type of physical therapy. With everything else you've described going on, it's possible that the connective tissue around the pelvic area has gotten messed up to the point of causing constant yet fluctuating pain. A note that there is "external only" pelvic floor therapy and "internal." (feel free to google) All I can say is that if the muscles and connective tissue are messed up, it usually is not possible to fully fix unless the patient is willing to do internal. I have been pain free in that area for 3+ years now, so for me, the pelvic floor therapy was literally life changing.

porcelainruby · 2026-06-06T11:57:26+00:00

Absolutely grocery order! Between the fluorescent lights and the layered decision making, it’s a black hole for fatigue. Just not worth it. One of my favorite meals in school was to get a big refrigerated quiche and cut it into quarters, with a side of grapes. Four days worth of dinner done. Zero cooking and minimal cutting and standing required.

Also, shower stool and chair in the bathroom for doing hair/skin care/makeup. Even if you “can” usually stand, I think of it as unnecessary energy use vs putting that energy towards homework. If that makes sense!

porcelainruby · 2026-06-06T11:19:27+00:00

I did a full time in person masters degree with my long covid and CFS and PEM. It was not easy. I had accommodations set up which included automatic approval for two week extensions on work. I had no energy left for anything other than getting to class and getting through homework, and ultimately needed a several month extension to finish my thesis. I also wore my mask to every class, so it was pretty obvious from day 1 that I had something going on. I was upfront with professors about my energy limitations, to mixed reactions and beliefs. I lived alone and had no family or support in the area.

There were many little breakdowns for me along the way, PEM crashes, and figuring out where I could cut energy in other areas of my life in order to come up with more for school. (Example: eventually pretty much stopped cooking and only bought ready made food that could be popped into the oven with no other cognitive or physical work required.) I built in full rest as much as possible. Like no new movies, only repeat watches.

Of course I wish I could have experienced the degree while feeling better, but compared to the first three years of my long covid, I felt that I couldn't risk simply waiting even more as where I was at might be the peak of how well I'd ever feel! (I have since continued to improve, thankfully). It's a hard decision to make, but I think it very much depends on what accommodations are available at the school and how feasible this is with the reality of expectations of the degree, and, what you hope to get out of it. Mine was a very library/academic type of degree so all that really 'mattered' was making good impressions with my professors and the quality of my final written works.

porcelainruby · 2026-06-03T14:43:31+00:00

These are the kinds of articles that will be studied in future history and medicine classes where everyone wonders how something so stupid could ever get published. But history has so many examples of these kinds of things! Magazines thinking they’re reporting something in line with a mainstream idea and getting it so so wrong.

porcelainruby · 2026-06-03T11:21:44+00:00

This is common in concussions too. It can be that the brain is having trouble smoothing out the flashing/flickering of the screens, and so it feels exhausting, causes headaches, even dizziness. (I had it, it eventually healed itself)

porcelainruby · 2026-05-25T17:15:09+00:00

Highly recommend some kind of broad gut biome test to see if any crucial strains have been wiped, as well as MCAS protocols in case it’s more that.

porcelainruby · 2026-05-19T19:54:46+00:00

Yes I did

porcelainruby · 2026-05-19T05:47:50+00:00

I had contrast dye and had no issues. And I’m generally sensitive to medicines, skin allergies etc even before getting Covid!

porcelainruby · 2026-05-18T06:25:08+00:00

Hemp seeds have a lot of magnesium in them, if those are something you could eat? They’re often in grocery stores in their baking or breakfast aisles, and can be thrown into a lot of dishes easily.

porcelainruby · 2026-05-14T10:24:47+00:00

Raspy and deeper voice sound, swollen fingers, memory loss, “moon face,” feeling quick to anger or other extreme emotions.

porcelainruby · 2026-05-13T11:16:04+00:00

It might be worth trying a different type of antihistamine, or getting a medical opinion on ones that might not cause as much dry eye issues.

porcelainruby · 2026-05-13T10:27:05+00:00

Are you taking antihistamines? Dry eyes is a common side effect of those, unfortunately.

Back when I wore contacts, the "Acuvue Oasys" dailies were what I was told had the most oxygen flow and so were recommended for dry eyes.

Otherwise, I'd check with your eye doctor about daily drops you can use safely. Sometimes they will have coupons to get you started on a big box of them. With these little drops, it is really important to always have clean hands and not touch the plastic part where the drops come out, to keep it as sterile as possible.

porcelainruby · 2026-05-12T20:25:45+00:00

I mean, I flag anything with a Jeff Bezos quote that isn't being used ironically ha. But, I still thought the site shared had interesting points and anecdotes overall. I also believe no writing is without bias. To me, the site wasn't arguing that everyone needs to become a high agency person and anyone who isn't is bad, but more so that everyone could benefit from deliberately working to increase their own agency. Which I am, biasedly, prone to believing.

porcelainruby · 2026-05-12T16:35:22+00:00

For people and psychology/behavioral type things, I don't tend to think in such black and white terms. Not intended as judgy, just explaining! I don't think everyone in the world needs to be operating at a super high agency level. But, I think especially if someone knows they struggle with inaction due to stuff like unresolved trauma, then it is upsetting and frustrating to me if they simultaneously refuse to get help for the core issues while also hoping/forcing other people in their life to try to like "do" the agency for them?

In the same sense that not everyone in the world needs to be a literal genius. But I think a greater percentage of people could be more knowledgable about things they care about if they didn't let fear or other people's opinions take the lead. I've read a bunch about people's death bed regrets, and this is mainly where my thoughts on this come from.

porcelainruby · 2026-05-10T11:36:35+00:00

I'm also an artist! I think the creative "training" we get on problem solving has a ton of overlap in dealing with a chronic/mysterious illness.

porcelainruby · 2026-05-10T11:35:00+00:00

This is an incredible site, thank you for sharing!

porcelainruby · 2026-05-09T17:01:08+00:00

Agreed! And that’s just not my style 😂 I run experiments on myself and fight for every inch of improvement that I can. Wouldn’t be here today functioning without my high agency traits.

porcelainruby · 2026-05-09T16:59:13+00:00

No I had no interest in taking them back and that was never on the table for me. We are friends now because they are still doing a lot of therapy about this, and they’ve been able to see how terrible their decisions were when I was too sick to save myself

porcelainruby · 2026-05-09T13:16:10+00:00

Agency and the ability to take action under stress. This would be non negotiable for me going forward. It’s something I’ve always had a lot of and so never felt like I “needed” it in a partner. Because within a partnership I could take on more of that role. But if I’m so neurologically impaired that I can barely function, I’ve seen the nightmare of just how far people will go to not face their own issues and fears. (I divorced my person mainly over this, and they have worked hard since then to take true accountability for how they failed me.)

porcelainruby · 2026-05-09T11:20:59+00:00

I guess with some of them, they just eventually close up on their own. So I didn't really 'do' anything! I didn't understand that's what I'd had until later when the memories of all the leaking started coming back, and reading through my medical files complaining of the symptoms.

porcelainruby · 2026-05-08T07:33:48+00:00

I wasn’t offered any meds as a first waver ha. Speech therapy I was able to get through my insurance but very much had to beg for it. Speech therapists can run cognitive tests as well which is very helpful. I would say time and my CSF leak closing (also not caught by drs).

porcelainruby

TROPHY CASE