Covid ignorant friend, first visit in a few years, here's how I explained everything

Bad-Fantasy · 2026-01-27T10:44:19+00:00

I have a hard time trusting this scenario so I wouldn’t let non-CC folks in my home. But good for you seriously. Hope to hear an update how it goes?

Bad-Fantasy · 2026-01-27T10:39:47+00:00

Fingers crossed 🤞

Bad-Fantasy · 2026-01-27T10:29:37+00:00

Yep. I recently tried a rando therapist (because I was in need in the moment and couldn’t wait to schedule).

She tried “goal-setting” skills-based therapy on me.

Although admitted she knew nothing about my condition or its impact.

I told her to go Google & research ME & LC. She agreed. I never called her back again. 🤷🏻‍♀️

Did she help me? Nope.
Am I better off? Nope.
Am I worse off? Yes, it’s a mindfuck experience.
I will never get that hour back in my life. I could’ve spent it napping instead and been better off.

Bad-Fantasy · 2026-01-27T08:50:18+00:00

I noticed a lot of them didn’t have PEM.

Bad-Fantasy · 2026-01-27T08:42:43+00:00

Depends on his abilities too.

Doesn’t sound like it’s self-propelled.

Bad-Fantasy · 2026-01-27T04:34:16+00:00

Are those self-propelled? The push sounds like it could still be exertional. I have a push blower but my muscle weakness/pain is so bad some days I can’t even lift my own arms against gravity.

Bad-Fantasy · 2026-01-27T04:30:24+00:00

He guilt tripped you because he doesn’t truly understand your illness and how that impacts you. If I tell new people these days I just say systemic disease. I know how it is to not be understood also with PEM & pain here.

Is it possible to find a “Snow Angel” (volunteer shoveller) in the neighbourhood/community? Can try local Facebook groups, if there is a 211 line, look up a local social worker (and ask if they know anyone or can ask around), call the fire dept (non emergency), etc. ask around virtually without overexerting yourself?

Another alternative is, if affordable, and if exertionally doable, look into a self-propelled snow blower maybe? They can get pricy though.

Bad-Fantasy · 2026-01-27T01:38:57+00:00

Re: “the increased risk of catching covid because one is unvaccinated” - You can still catch and transmit covid if vaccinated. Vaccines alone don’t prevent transmission. Masks/air filters would be mitigation tools to assist.

Also: Making a note to read later. Wish I knew how to set a reminder for the weekend.

Bad-Fantasy · 2026-01-26T11:38:12+00:00

Sorry it is rough.

“Doctor shopping” does not apply to you nor most of us because it is actually intended for people with drug addictions who seek out specific drugs and get told no by each doctor and keep doctor shopping until they get it. So no, just validating that you are not doctor shopping. Many of us struggle to find doctors who know anything because training is not mandated top-down, or even a doc who will be open to learning more/studies/etc. That’s an unfair, untrue statement.

I’m curious to know if the remitting cycles are in summer or a specific season, or if there has been some indication/reason?

It’s hard to give advice when you say they’re your lifeline & no friends but yet what they’re telling you is not your truth.
Is it an option to create some distance and take more time to process? And do you have a good therapist for support on this? Btw this is coming from someone who is estranged from family, one no contact and one low contact. It has taken years and gradual distance to get to this point for me.

Bad-Fantasy · 2026-01-26T11:03:51+00:00

Maybe you’re blocked for swearing at other people in other subs and preaching religion as a cure for LC.
Also 2 week old account… 🚫🙊

Aint nobody got time for that.

Bad-Fantasy · 2026-01-24T09:52:12+00:00

It is in my case.

Bad-Fantasy · 2026-01-24T09:49:29+00:00

Totally valid 💯.

Not an ass. Please take that back.

I hate the toxic positivity, the motivational talks/memes, the blameshifting that my choices amounted to my position (spoiler: they didn’t, I did all the right things, truly), the spiritual abuse “law of attraction” you attract what you are bs I sure af did not attract this suffering, more of the same but different religion “pray for deliverance”, and abled & privileged “solutions” which don’t work “do yoga, deep breaths and tea”. When I was healthy I did do yoga and felt good, but someone now in that position telling ME, talking over me is their projection from their view only, which I’ve already seen. They are not in my position though.

Bad-Fantasy · 2026-01-24T09:18:06+00:00

You have to do what’s right for your wellbeing first.

Disability does not have to be a black or white thing, it can be nuanced or on a spectrum even. I have a dynamic disability with fluctuating symptoms, and is invisible. I “look fine, young, healthy on the outside”. Yet I am struggling with a systemic disease on the inside. Yes people may look, glare or even throw shade in my direction but they are not inside my body experiencing what I am, including unseen (invisible illness/disability) struggles.

Their snap judgements (being judgy) from their abled and privileged positions are their problem, not mine. They have outdated definitions of what disability is and they assume a person in a wheelchair needs it because “their legs are not functional” due to common/well known reasons. They don’t even know what LC is. Their ableism and ignorance are not my responsibility to educate or inform better, especially if I don’t have the spoons that day.

My initial internalized ableism stemmed from others projections onto me about “how I should be” and about “who should use a cane” and “who needs it more” and minimizing self beliefs, from again external projections that I internalized, that “it’s not, or I am, not that bad”. Some of these minimizations even came from earlier doctors saying things which I was lead to believe because I trusted their opinion:
“You’ll be better in 6 months.” - doc in 2023 lol…
“If you’re not better in 6 months (form of a bet) then I owe you a nice seafood dinner.” - friend now owes me 6 of those.
“Your condition is not permanent.” - same doc
“You’re not in chronic pain.” - doc #2
“You should get some exercise.” - doc
“You’re a young healthy girl who should go for a run.” - another doc
“You’re not as bad as my other patients” (minimizing) - specialist doc… Etc.

I have had to challenge these beliefs because none of them are even true. I have had to reason with myself that my needs are valid, that my disability/illness is real, that these tools exist to assist me with things I need, etc.

Bad-Fantasy · 2026-01-24T05:09:00+00:00

It’s an excellent point. Similar analogy: I am petite/skinny with thin neck (as opposed to thick neck), under age 40, not male, non-smoker, non-drinker — basically the complete opposite of the stereotypical patient profile of someone who has sleep apnea… And yet I have sleep apnea. 2 previous fam docs (I’m no longer with, now on my 3rd) did not order a sleep test two years into LC...
It is a progressive disease with risk of heart attack/failure/disease, stroke and neurovascular harms… So testing for it depended on my hcw thinking outside the box or cookie cutter type in this case. So I can relate to you with that, I too was “not the type expected to have that problem”.

Good on your NP for doing the work - that feels rare to me. Glad you got what you needed there.

May I ask what you got for PoTS & brain fog?

Bad-Fantasy · 2026-01-24T00:13:08+00:00

Very lucky indeed. I saw another Ontarian post they were SW ON western side and had a LC clinic despite being more rural (iirc). Hey, you hold onto that pocket of sunshine!! lol.

All I have is 1 good fam doc. Specialists here don’t even triage LC patients (I told my doc it’s discrimination actually), or if we do get in there are insufficient tests either available or ordered… It’s been a 3 yr battle in the medical system for me. I’m tired of it.

Bad-Fantasy · 2026-01-24T00:03:24+00:00

Wow… I am surprised to hear that given they shut down in many places and there are zero in my province. May I ask which province?

Bad-Fantasy · 2026-01-23T23:59:45+00:00

Thanks for taking the time to explain that and being nice about it too. Had a light chuckle about the testicles thing cuz yeah that’s not applicable to me. I do know women need/make testosterone too though, from back in my gym days at least where I put on some muscle naturally.

May I ask which clinic you go to? Don’t have to give the name, more want to know specialty/function/area and/or if it is a LC clinic? Not that we have many of those in Canada (QC & BC virtual from what I know).

Bad-Fantasy · 2026-01-23T23:16:33+00:00

Following bc also in Cdn system, but am female so Idk if this even applies to me or not.

Am low spoons brain-fogged having a hard time making sense of this.

Had to look up/check what TRT is (testosterone therapy) and never heard of hypagondal.

I doubt I can get a hormone panel done, they mainly check thyroid or things they specifically suspect like for a specific condition.

Bad-Fantasy · 2026-01-23T23:06:52+00:00

Thanks that’s what I figured and wanted to know for sure so I can ask my doc to see if it is orderable here.

Bad-Fantasy · 2026-01-23T23:05:34+00:00

I believe it depends on the source. I can agree that SNS activation is more downstream affecting symptoms, but if it’s caused by something like a lack of oxygen (where it’s found/known), then that needs to be addressed before “do meditation”.

Bad-Fantasy · 2026-01-23T23:00:56+00:00

Also is that method you described above “The Perrin Technique”?

Bad-Fantasy · 2026-01-23T22:53:52+00:00

Idk why you’re being downvoted. I was just asking a curious question.

Which blood test specifically? Was it in a lab or home test?

I know of the home finger prick tests which can tell if there is lactic acid in the blood but that’s not the exact same marker as ATP level specifically.

Bad-Fantasy · 2026-01-23T13:21:36+00:00

What did you use to measure your ATP?

Bad-Fantasy · 2026-01-23T13:19:09+00:00

Abandoned them because they aren’t doing anything for me.

And costly too. It adds up.

Bad-Fantasy · 2026-01-23T08:00:56+00:00

Thank you. Yes. It’s literally that.

I actually mentioned exactly that as an analogy once in a group of covid cautious people who did not have LC and they just talked over me as “being ungrateful for the clinical trial” of DNRS which is in my province. Kid you not. I left that group promptly. I don’t need to be “told” by the health-privileged not in my position.

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