Our whole household basically came to a culinary screeching halt. I hadn’t realized how much chili we used until my diet had to shift. Thankfully, my spouse does 99% of the cooking & has taken this as a challenge to be creative. Our kids do the other 1%, & they’re pretty lost in the kitchen now!

Until both the therapeutic & medical communities stop confusing improvement for cure & let go of the misguided belief that patients can’t hear “we don’t know” for fear of losing credibility it’s difficult for both clinicians & patients to close the communication & trust gaps.

trying to transition from helping me navigate CPTSD & complex family issues to supporting me as my identity crumbled after I developed long covid & the mild/moderate ME I’d lived w/for 20yrs became mostly severe. He persevered & was an amazing resource for me. He’s gone on to get a medical degree.

Unfortunately, the fact that therapy can & usually does help ppl feel better mentally & therefore often physically has been mistaken as curative for a laundry list of things since the advent of talk therapy. My last therapist ran into a great deal of pushback from his colleagues when he was

Today’s a bad one, probably made worse by getting emotional when Eldest sent a pic of the engagement ring they picked & said they picked it in part because it’s similar to our wedding rings.

Between your cornetto & my turquoise rhino (long story) our parents are totally gunna find a way to cure us 😉

It sounds like a particularly lovely gift, & an impressive one to get back in one piece!

I think that’s a great way to explain how it works, especially side I’m currently doing a Wile E. Coyote impression at the bottom of that canyon.

I’ve had an official me/cfs diagnosis for over 20yrs, I keep up w/research as much as I can, but I regularly learn new things. Particularly about how other pwME experience it differently. Someone who isn’t basically breathing ME info would be hard pressed to actually “know enough”

NTA
Even if they do know a lot there were definitely better ways to express that. They could’ve read over the info simply as an act of support or a way to talk about which pieces you feel particularly pertinent to you.
What gets me about their response is that this is a constantly changing field,

make blood move + chill out the parasympathetic nervous system.

Total aside. I take a small dose of Metropol (another beta blocker), & it’s definitely helping w/HR regulation, but more than that it’s significantly lowered my anxiety - which turns out to be a known side effect, sort of a double win.

Ditto

I’ll add one tiny bit: on days when it’s really bad & walking/standing isn’t safe very light massage on my limbs helps (my spouse helps me, but smooth foam rollers can also work, just wanna avoid deep tissue.) I also do VERY light stretching on those days. Theory, as explained by my doc, is

adults, Spouse has never had a sense of smell, & yet occasionally one of them will be handing something around to smell & they’ll start to hand it to him then suddenly realize what they’re doing. That sort of mistake is common, & ppl have always been weirdly pushy when they learn he can’t smell.

That makes sense to me, it’s something my Spouse is sensitive about, too. Losing one of the core senses is debilitating &, personally, I don’t think it’s any more okay to tease ppl about it than it would be if they were blind.
Scent seems to fall into a weird spot socially. Like, our kids are all

Is anosmia a newer thing for you?

I’ve only experienced it once for a few weeks at the start of what became long covid, but my spouse has never had a sense of smell & usually tastes things in a way that’s completely different than my experience. Consequently, I’ve learned a ton about it & food.

The duality of being invisible and also having to require the people pay attention to me while I’m in my chair is exhausting.
I can’t roll my chair myself now, but even just listening to whoever my driver is say “excuse me” 300 times in an outing is tiring.

I dunno, but I don’t like it 😳