Same!
It sucks & I’d like it to stop now. Fingers crossed for both of us!
I have to go to a place to do bloodwork tomorrow so I’m absolutely going to drug myself to sleep tonight (I have Rx sleep meds, I just don’t like taking ‘em - for no reasonable reason lol)
(No End In Sight void) tag can mean: I need to vent/want support & advice is specifically not asked for. Personally, I’m not a stickler about that, but I know A LOT of people who are.
The chronic illness community is a subculture that no one wants to belong to, so zero shade for not knowing!
it’s best to ask ppl w/any chronic illness or disability if they’d like advice before offering it. I’m genuinely not trying to call you out, I know it’s not something able ppl think about, but we get so much unsolicited & often inaccurate advice it can actually be hurtful. Also, the neisvoid
Nope!
I have a stack of stuff for congestion, though. It honestly would be nice if that was the issue.
One of the major issues w/both of the diagnosis I mentioned is a variety of insomnia that’s (probably) from dysautonomia.
Side note: Since I’m assuming you’re a real human who truly means well,
That’s a ton to be dealing with, & I’m very sorry you are - but also glad you’ve got good company to go through it with.
(I’m hiding my screen from my very sweet Lab/Australian shepherd mix as I type this, but this super made me miss my German Shepherd service dog - they’re great companions!)
I have nearly 80 MECFS blue and white ribbons ready to be distributed!
#Crochet #CrochetSky #MECFS
Yeah, I don’t recommend it. It’s a solid zero star experience.
Upside (?) is I got more diagnosis for, & learned a ton about, things I’ve been dealing with for years! Like POTS, hEDS, & (it’s probably) MCAS
*I’m pretty sure it’s the combo of having ppl I love share a joyful experience w/me which made me really feel my limitations & kicked off another round of grief, & hiding that entire emotional response for days so I don’t make the ppl who shared it feel bad or like they have to “protect” me 🙃
2/2
I’ve spent a lot of today doing the what-caused-/this/-crash mental inventory & I don’t like what I’ve decided it probably was*.
Being this kind of sick is dumb & I don’t like it & it’s not invited to my birthday & I wanna pack up my toys & go home 😡
1/2
We’re around! Just, ya know, tired ;) There’s a good group of folk here who really get it & are happy to give support & answer questions. I follow one of the me/cfs lists, it’s handy!
I’ve had me/cfs for ~20yrs, I was in a good place managing it until I got long covid 4yrs ago. It’s been a ride!
Last night had all the external things that always help me sleep - it was even raining just hard enough to faintly hear the rhythm on our metal roof. It was really lovely.
But me/cfs & long covid had other ideas so instead I got less than 3hrs of sleep & they weren’t even consecutive 🙄
#neisvoid
Without starting a fight, may I just say that if you deeply and profoundly understand the need for human contact as a result of Covid, you might consider doing something to help the people still at high risk from Covid access it, instead of acting in ways that excludes and isolates them.
As an Episcopalian I’m completely baffled by this tend where “Christians” say God is so weak they need human “warriors,” questioning a book written by other humans is bad, & being offended when ppl quote Jesus is good.
The contradictions & blatant fragility do my head in
I don’t have an official MCAS Dx, I just have 3 drs who’ve told me they think I have it & a list of symptoms that dovetail - but I still catch myself after a few days w/out symptoms thinking it’s not a thing & then being surprised when symptoms pop up again 🤦
rescue antihistamines ftw
#neisvoid
this but also i *hate* masking. it's uncomfortable to have something over my face for hours on end. same reason everyone else hates masking.
but i would hate being stricken with long covid more. i would hate the organ damage that comes with any infections, and i've already had it once.
...and
I get it, though it might be better to ask or just tell someone your situation & let them offer so you’re not stuck with it.
As an aside, I’ve used the ones I’ve bought from my kids for copays.
#MCAS folks—
The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers.
Please take it, please share it!
Survey: forms.office.com/e/N4RDJYVep0
Org: ismcas.org
Qs: advocacy@ismcas.org
Unfortunately, they’re used so often for scams very few places will take them anymore. My kids get ‘em as gifts from older relatives sometimes & they usually give them to someone else in exchange for the value in cash or a store-specific gift card.
Maybe someone could do that for you?
& that’s not a the fault or failure of the patient, it’s a systemic failing. Almost everything is prescribed w/a set of generalized stats in mind (& that data set was terrible for decades), & it’s extremely rare for meds to be personalized.
Zoloft for 7yrs & I’ll never take another SSRI, ever. I understand they’re very helpful for others & that what I went through when I titrated off w/my dr’s help was on the extreme end of what happens to ppl, but MY body didn’t handle that well. I’ve seen addiction overcome ppl taking meds carefully,
Oh! I really don’t want to imply issues only form from misuse!!
It’s complex, & even w/super careful use some meds cause some ppl serious problems.
I took tramodol daily for a decade, I took half of what I was prescribed, but I was physically dependent & coming off of it sucked. I took
It’s a useful tool, but it’s also one I’ve had to put in a safe when one of my adult kid’s friends was visiting. Until we make all meds safe & none have the potential to cause harm to ppl’s lives we just have to be cautious, trust but verify our drs, & ignore the vast majority of headlines.
complicated kid. Some get heart failure, others me/cfs, some get better, many become seriously disabled.
Lots of meds cause issues, some meds cause addiction & more meds cause dependency. It’s a world I know well both as a caregiver & a patient. I take a benzo for CPTSD 2-3x/mo, & have for 20yrs.
GLP1s have been widely used for 20yrs, mostly, but not only, for ppl with Diabetes. It’s like a lot of the meds being thrown at long covid (LC), it’s been around a while. Which gives me some comfort since I can look at white papers that go back decades.
LC is the new kid in this situation, a very
I’m so sorry you’re having to deal with that.
Being sick (I’m intimately familiar) is a full time job, & resting is work.
If you aren’t familiar w/the neisvoid tag it might help find community & I’ve used a ton of info from the link below to defend myself:
batemanhornecenter.org/education/lo...
I had to look up what that is & that’s extra scary, I’m so sorry!
I’ve had me/cfs for 20yrs & LC for 4, so I get the desperation that comes w/being sick w/something ppl use as a punchline. It’s gutting to hear about ppl falling for snake oil & infuriating that the ppl pushing it are in power.
As an old who isn’t on tumblr I’m curious about what’s up
As someone with life-decimating long covid who is taking a gpl-1 for it & seeing some serious benefits I’m concerned
It’s not a panacea or a cure, but it’s hugely helpful for many ppl who would have a far worse quality of life without it
I have Long Covid, I don't want you to get it. Please keep track of the latest Covid-19 variations. The newest one is, Cicada. It's currently spreading through 31 states, and could give us trouble this summer! #MASKUP😷
You know what a super spread event is!
www.today.com/health/coron...
They aren’t wrong!
Masking should be permanent in healthcare. If we are going to end masking we should end rubber gloves, clean needles, washing hands, and any other strategy that works.
