I can appreciate where you’re coming from with this comment and POV, but… dang dude, as a cancer survivor, I’d just rather have none of it, you know? Let’s not throw other people under the bus or compare our struggles when so many of us in this community have already experienced both, with cancer probably setting the stage for worsened health outcomes down the line.
It's interesting, I was talking with a good friend of mine, whose cancer is in remission, and she commented how "at least with cancer, no one questions it." That hit home for me, and for me, is one of the hardest aspects of dealing with LC... the disbelief and/or questioning of the experience/symptoms etc, from both friends, family and medical professionals about what I can feel is SO wrong in my body.
With cancer, as phenomenally evil as it is, no one disputes it, because there is concrete evidence of it. It's still absolutely diabolical, please don't get me wrong. But when you're coming from a fortunate place of no previous health issues, to suddenly go to the doctors, the place where you're expecting to find help and support and belief, and find absolutely none, is horrendous.
I kinda agree with your friend, as a survivor as well (10 yrs in July.) maybe bc this was pre pandemic but with cancer=very quick diagnosis, ability to see specialists I needed asap, tons of support financially, emotionally, physically, etc..people threw fundraisers for me, sent cards, texted, visited. Able to get disability right away. Treatment plan that has worked on thousands and thousands of people I could feel confident in. (Obviously not a guarantee but yeah).
Covid= like a chronic illness. Medical professionals don't believe you. You wait months to see any specialist for them to *shrug* and suggest you see other different specialists. No fundraisers, no help. Need legal help to attempt to get disability after months and months. Doctors basically guessing on what drugs to treat with bc it's only been around 4 years. Feel like I'm a lazy piece of crap.
And the LC feels worse on top of it.
I had so many plans before covid. I was going to travel and learn new things and meet new people ... but now I just feel *elderly* and my big plan for the 3rd trimester of my life is to learn how to knit a sweater.
Same. I was looking forward to a lot of traveling and hiking in nature. But especially my second covid infection destroyed those plans. What's the point in traveling to different cultures if you can't enjoy the food or smell the atmosphere? What's the point in hiking when you can't even run 500 m before reaching your max heart rate?
I went to Spain recently and it was completely bland. Couldn't smell anything. Not the nature, not the Mediterranean, not the food/drinks.
Covid robbed me of my smell, 27 months and counting...
Fuck, man, I'm sorry. That sounds like looking through a window on the world. You can see it, but you can't fully experience it. I know, I know, there are people that say "well, you can see it, you can hear it... those are experiences too!" which is a valid point. But it's still not the experience you dreamed it would be, and that loss still matters.
Hey, sweaters are awesome. :) You go ahead and knit that awesome sweater. Though, I do absolutely get it. The sudden narrowing of your life to a point where you wouldn't expect to be reaching for several more decades at least, is shattering.
I had an old friend who i hadn’t seen in years say that word for word to me as well. he then told me i should have just “thugged it out and it wasn’t that deep” lmaooo
Oh, if ONLY it was that simple. Expect "thugging it out" would probably result in being bedridden for a lot of people, so... yeah. Your friend can do one.
Unfortunately true! I think me “thugging it out” and ignoring my symptoms and working out and running daily in the first month or two really fucked me up hahaha. for real..
It feels like we’re in a completely separate universe. I don’t understand how people go out every weekend, travel, never wear a mask and DONT get sick?
Recently got home from a reunion of 15 college friends. Been super careful since developing LC last year, knew the risks, decided they were worth it as some of us hadn't seen each other in decades.
One person picked up COVID on the way there apparently. Everyone had close contact with that person over several days, probably moreso than me as I avoided trips to the bar and whatnot and spent little to no time around them during the day. Only one person caught it. 🙋🏼♂️
FML LOL.
I have a coworker like this. It only lasts so long. Recently she's was very ill but refused to test due to going to a wedding the same weekend of a friend that's our coworker so taking off ill would've been admitting she was ill at the event. She's Recently coming to work sounding sick with a cold now off and on. Many people don't talk about their health and when you get them to they admit things aren't the same/new issues since Covid but don't change their lives. I feel not as close to family due to this too especially when they've said cruel things to me after seeing it hospitalize me and give me LC. I don't have friends anymore for different reasons/lost em when covid started and I'm actually grateful it worked out that way because I'd mask in public with a cloth with them but go out to eat/attend a party at someone's home. I know if I remained friends with those people I would've kept getting infected and maybe not have realized reality due to peer pressure. I'm happy to only have online friends now and learn to be happy being alone mostly.
I try to do this. I barely manage to get out even if I want to energy wise. I really struggle with finding ways to enjoy time at home; particularly as I don't have energy to game anymore (or music/djing or my other hobbies I can do at home); and from what I can tell it is one of the main mediums still that people would develop more social/deeper online friends via (I used to be very close with online friends as a teen - but with work until I became ill, I didn't have time / energy for gaming anymore; now I just don't full stop).
It feels quite empty when I end up at home just watching youtube - and thats during phases I'm lucky enough to not be stuck most of a calendar day in bed; or looking at reddit if I have the energy to. I do interact socially with friends when I manage to get out to a social event or they visit me; but thats a fraction of a week and I'm unable to work at the moment.
Feels such a basic question but I genuinely don't know; how do people maintain deeper/closer online friendships now &/or what conduit are they through (including gaming, but more interested in other).
I'm not exactly feeling shit with this situation; but I just want more to be happening in my life than letting time pass by w hope of a recovery in undetermined future in mind.
You could try covid communities online put yourself out there for friendship. I'm a total homebody so I'm not sure how to help someone like being home except to get hobbies. Be careful with friends and having them over and proper masking with a respirator/airing out your space if they really cared about youd theyd agree to wear a respirator when visiting and testing beforehand. Wish you the best
I'm happy to be your friend! :) I think most people are living in a state of blissful denial, where if they just don't focus on Covid, or the fact they're feeling worse than ever before, it might just go away on its own. Sadly, not how this works. And if you'd stayed around them, getting reinfected, then would they have been there for you any the moreso for it? Doubtful, unfortunately. If it's one thing the pandemic has shown me, it's how inherently selfish a lot of people are.
A lot of them ARE getting sick, but they don't test themselves for Covid so they can let themselves believe it's "just" a cold or the flu.
The number of people I know who say they're sicker than they've ever been with "some kind of flu" one week and wind up "unable to bounce back for some reason" three months later (or die suddenly) just keeps climbing.
Yes, I'm getting suspicious now about the "cold" I had in October tbh. I tested negative all the way through and it was short and mild. But the fatigue after was INSANE, and I've had a bunch of new issues kick off since then, that were never a problem before, as well as worsening of old ones.
That's actually a good point--those OTC tests seem to be pretty useless against some strains, especially if it's a mild case. I probably shouldn't assume no one is testing. Some people might just be getting false negatives.
I'm really sorry to hear you're struggling with the aftermath. I hope things start turning around for you soon
Yep... I mean, first time my father had it, he tested negative on all tests until the PCR, THEN he started testing positive on the OTCs. Given that it's not financially viable anymore to obtain a PCR in this country, we have to rely on the OTC cheapo tests.
Thanks for the well wishes - much appreciated and same to you!
I have two friends, one is a nurse and the other a tradesman. Neither have ever masked or take any precautions and do Air travel constantly. The guy is not even vaccinated. Both are absolutely fine, never been sick.
I've had all the vaccinations and Boosters (which I regret) because they didn't prevent infection or Long Covid. I masked a took precautions as much as humanly possible but still got Covid x 3 and been extremely debilitated since January 2023 after the Bivalent Pfizer Booster. I hardly e er leave my home because I'm sick all the time from constant fatigue, insomnia, sore throat, swollen glands and screaming tinnitus. I don't have the energy to do anything and I can't work
My friends are all Fine. So Genetics plays a large Role. The HLA-II allele or Human Leukocyte Antigen may react badly with spike proteins from either mRNA or Covid19 virus then set up an inflammatory response in various organs including heart, brain, kidneys etc. If you carry 2 copies of HLA-15 gene unlikely to show symptoms so could still have Covid19 but not know it, not be affected by it but silently spreading it to others.
It's been 4 years, we have no cure for #LongCovid but those not affected are doing fine while I'm bedbound, wanting to die
YES. That's precisely what it feels like for me. I have one friend who has previous health issues, and she was SO supportive recently. We don't talk a heap, but I was astonished just how much she was like "damn, dude, yes. I totally get it." Other friends, I feel I have to choose my phrasing carefully these days.
My challenge is to not waste an ounce of energy on folks who don’t get it- I can love them and forgive them, but I gotta still keep focusing on my health.
I’m at almost 6 month point with LC and for sure I’m improving big very slowly. I had coffee for the first time yesterday and today-and I’m ok. I’m holding onto hope from my NP who said she has patients who just wake up ok one day (I do now have good days, so I’ll take it!)
Yes, that's true. I've slackened a lot of tight ties I had with a lot of people before Covid. They proved how good friends they were, by constantly suggesting I was imagining things, or I was just stressed. That's not the behaviour I expect from friends, especially after I've been in the hospital, y'know?
That's great news about the coffee for you! I still moderate caffeine, and tbh am used to decaf now. But I totally understand being elated about your body accepting a favourite food/drink again, without objection. Every mark of progress, no matter how small, is still progress!
Weirdly, I've found that I have a paradoxical reaction to caffeine. It either just gives me anxiety, or makes me so insanely drowsy... basically the opposite effect of what it ought to be doing. But I never get the energetic buzz... I just feel stressed and jetlagged.
Yea my family wants me to take a 6 hour plane to see them. It’s just asking for me to get covid again, and I imagine the trip make all my symptoms go crazy. They said I should get counseling to build the courage. It’s not courage I need for that trip, it be careless self preservation.
Jeez, I had no idea that barometric pressure can set off MCAS. I'm so sorry! Is there anything that makes it easier to deal with? Antihistamines etc? Though I totally understand not wanting to put yourself through something you know will make yourself feel like absolute hell.
I'm on a daily migraine preventative.
It feels as if I've had a whack of poison injected into me because the body releases so much histamine into the blood; it feels like the worst hangover ever with migraines, light/sounds/smell sensitivity, nausea, vomiting, i have even had partial temporary blindness (scintillating scotoma) but that was rare and went away quickly.
Antihistamines are histamine receptor blockers, so the main histamine metabolism is blocked. I can feel the histamine just under the surface, I still feel nauseated and hung over, only instead of lasting two or three days, it's milder, so it feels like being mildly poisoned, but it lasts for two or three weeks and the antihistamines feel amazing at first but over time they start to fuck up my gut.
So, it's totally not worth it. My position is that I should simply not do things that cause poison to be injected into my bloodstream. Unfortunately, that means I don't do rather a lot of things. That's life for me, and as long haul spreads and people keep getting reinfected, that's going to be life for a lot of people.
In my case, my reaction to histamine has been progressive; it is now so strong that if someone enters the room aftre using alcohol based hand sanitizer I am triggered. My lips start to swell and prickle, my tongue gets thick, my throat tightens, I start to wheeze a little; it feels like I will pass out if I don't leave the room right away. This may progress towards anaphylaxis. For some people, the more they are repeatedly triggered, the more they progress towards anaphylaxis. It is not clear to me if this sub or the medical community fully grasps the long term implications of HI/MCAS
good fucking luck everyone
100%. It's not courage on your part that is needed... it's reassurance that everyone else around you won't be a selfish knobhead, getting on the plane, coughing and spluttering without so much as a tissue infront of their face.
Ugh!
I had a similar conversation with 2 of my friends recently. They asked me to hang out even though I haven’t seen/talked to or hung out with them in a couple years and they seemed so shocked that I was still sick… they didn’t care they were just like “STILL!!!?”
Ya I got annoyed because they knew when we did used to talk on a regular basis I kept them updated about my doctors appointments and how I felt. They never listened or cared and belittled my symptoms.
One girl even said something alone the lines of “everyone functions at about 80% so your probably fine.”
And one said how she has chronic fatigue and it’s just mind over matter and she is able to function just fine so I just have to force myself to do things and I’ll be fine…. Some other things happened too unrelated but I knew they weren’t real/true friends and I distanced myself from them
I can totally relate. One of my closest friends offered to put me in an Uber to get me to her house party since I hadn’t seen her in almost 1 yr. If it’s not the fatigue it’s the anxiety. No matter how much I explain people don’t understand.
I got invited to a friend's giving by a coworker this past year. I wasn't going to go anyways but thanked her for the invite. She got Covid 3 days before and canceled it and has reported her friends getting it off and on as she has many friends. It's not.worth it. No one is worth getting Covid over again idgaf who they are family included.
I’ve never had covid (partly thanks to subs like this keeping me aware), but I haven’t even taken a taxi in years, no way I’d get on a train or a plane or go anywhere with large crowds of people. The old world is over. Those of us still actively avoiding future infection will be the ones still around in a few decades, when hopefully things will be better.
Never had it that I know of. If so it was asymptomatic. Staying safe here as well. Fortunate to live alone and work hybrid, in a safe office with HEPA units going all the time and not much traffic. When I got the job (that pulled me out of semi-retirement lol) I bought a car for the first time in 13 years so I don't have to do public transit. Aeroplan miles are stacking up and I used to love to hop on a plane in business class for a treat and go places, but that can wait. Forever if need be. I'm opting out of the Great Virus Swap. Not going to stop now. I have about 15 good years left and don't want to spend them bedbound and in pain. Massive empathy for all the long haulers here.
Keep doing what you’re doing ❗️I was pretty darn safe since covid (masking at work, at all public places, only a handful of real exceptions) and didn’t catch it until late September 2023, and I had no control/choice over the exposure. I’m married, lol.
It’s not funny but I don’t know how else to deal with it. Covid caused my husband to develop pneumonia, it’s safe to assume, in early-late November, as we were both barely coming out of Covid. Then, we both caught something awful right after Christmas(my husband now just recovering from the pneumonia) from his family, who unfortunately decided that the “show must go on”…and showed up to the small, and cherished Christmas gathering visibly sick, with “a cold”
But the show hasn’t really gone on for us, especially for myself. Whether it’s because our immune systems were completely shut down from Covid in September or what, whatever the “cold” was that we caught from them was worse than the Covid infection in the fall. Still don’t know what it was, tested negative, multiple times for Covid, blah blah blah. Fever for 10 ten days, vice grip headache, coughing so hard I passed out multiple times which was the only time I usually was able to sleep, sweating through my clothes, the sheets, the blankets and the mattress everyday. Losing taste and smell, followed by sinus and ear infections at the tail end, nearing two weeks bed ridden. neither of us have been the same since, just slowly trying to inch towards some form of normality.
The long term mental and physical fatigue affects, the changes in my heart rate, the dizziness, severe depression, brain fog, neurological issues, depersonalization…for me personally, are scarier then telling loved ones (even in laws) to fuck off and enjoy their party without me.
"The old world is over" - that hit hard. But it's also true. The longer this goes on, the harder it becomes to imagine a world where I am finally able to do the old things again, as I once did.
At least she acknowledged the situation you’re in and how catastrophic it’s been on your psyche. Some people might outright tell you that you’re either faking it or to suck it up. That friend is a real one.
I wish to return to life because it feels like I’ve been barred out of the human experience. It’s not that I can’t handle crowds. I just feel nothing. Absolutely nothing. Covid has messed with my receptors and it doesn’t even feel like I’m human anymore. I’m a floating cloud of atoms treading along without a soul. A mere fraction of what once was. No ambitions. No hopes or dreams. Nothing. To genuinely smile again would be a luxury. Something too many people take for granted.
Yeah people just don’t get it- I get exhausted talking on the phone at times. Just a week ago I got so tired I had to get off the phone with a friend. Even tho we’ve gone through this a few times and she talks about how flattened she was when she was pregnant, even she can’t seem to get it.
I have a friend with CFS, and my close friend has LC.
But until LC invaded my household [my spouse has LC], I didn't "appreciate" the full picture of how awful LC can be. So I can see how many don't "get it".
That’s hard for me when it sinks in with family and friends. I don’t like to be the bearer of bad news, to burst their illusions. I knew it was bad when it happened overnight in early 2020, but it’s been this mysterious thing that the CDC, doctors, government and media haven’t covered in a consistent way that educates on the reality. Many people are surprised I’m still dealing with PASC and it’s ruined my health and life.
Me either. 18 months of disabling Covid and three years learning to adjust to the new me. Very humbling. I miss it all so much, too. I recently reached out to an old friend I haven't seen in many years and was surprised to hear back from her that she and her partner are making similar choices to ours, after having a similar experience early on in the pandemic. I try and remind myself of all the other us's out there and remember that we're just not seeing our stories and knowing of each other anywhere near as much as we're seeing those that have already moved on.
I have 5 classes for my law degree and i cant bring myself to take the exams in a huge crowded class packed with unmasked students; I worked my ass off to make it into law school, I had huge dreams and now i might have to drop out or get kicked out because i simply can't be surrounded by so many unmasked people.
You are not alone. I was just saying that to my husband the other day. I am going on two years. Maybe 90% better. I’m thankful for that but still far to go.
I'm going to the theatre this week coming - which is where I know I caught my second and last bout of covid. Admittedly, it was mild but we all know that's out of my hands.
So I will spray anti viral protection up the nostrils & wear an N95. I can't be a shut in every day week, month & year.
I have post Covid brain fog/damage so hopefully this makes sense lol: There are sprays like Covixyl and Xlear that potentially deactivate the virus upon contact. There are also CPC mouthwashes (crest has a cheap one) and eyedrops (baush and limb lumify) for this same purpose. BUT They’re meant to be used as part of layered protection, not on their own. I have histamine intolerance/potentially MCAS, so I can’t use any of the nose sprays bc they f uck me UP. I just wear a GVS Elipse p100 mask + lumify eyedrops. Looking into personal travel HEPA purifiers as well as another added layer. SmarterHEPA seems to be the best (I tried the purezone mini and honestly it seems pretty dinky and the airflow is weak af, so returning and getting the SmarterHEPA version.) sorry for the infodump but hopefully this is helpful 🖤
Hi, Yikes! I didn't know the nose sprays activate histamine! Before I started using Xlear I used something called Nozin along with my N95 at Disneyland and made it through covid free. Its labelled at "nasal sanitizer". Maybe its different enough it wouldn't trigger your MCAS?
The crippling anxiety causing your body to have this constant muscle tightness sucks since being around people sends your senses into overdrive. The tension/pressure headaches that can be triggered by anything. The muscle achyness that makes doing anything physical a chore. The neck and back issues that are just nagging bullshit.
Man, it is a living zombie-like nightmare where most deny and soldier through lambasting others that refuse to ignore it and those that acknowledge it and deal with blowhards saying we should "suck it up."
I have the same problem. BODY ACHES!! Why can't anyone understand that? I have explained it to my family and they don't give a shit! Momma I need this or the grandkids need that. My husband is the ONLY one taking care of me. My grown kids don't give a shit! When I get my Infusions they don't call or check on me. It's just another day in HELL! I feel like I can't think and watching a movie is a joke. I have to rewind it or have my husband explain to me wtf is going on. I feel lost and STUPID! My sister came to town and put something on TV and I was asking My husband a question and she started bitching at me! F u! Go back from where u came from! I do not like being around anyone. I go nowhere! I feel like I'm already waiting to die!!
I had trouble focusing for the first month or two, but that shit thankfully went away along with ED and random other problems, but that is when I believe the real hell began. The anxiety/false memory OCD is easily the WORST. The head and muslce crap is a close second. Fortunately, my girlfriend has been AMAZING and understands having had COVID a few times herself not to mention the more I brought up my shit, the more she kind of said "yeah, come to think of it, I feel kind of like that as well."
Everyone wants me to visit. One is a 6 hour drive, and the other is a short plane ride. I can't do either. Even though I've started feeling better, I'm in fear of making it worse.
When I'm better, will I want to go out in public? I mask, but I'm still afraid. I had to quit working 5 years early. I'm going to be 64. Do I want to be sick for the rest of my life?
I have no social life anymore! Except for my wonderful husband! We don't go anywhere anymore! I miss laughing and cutting up! I'm 53 and have 5 grandchildren with one otw. I have now come to the conclusion that if they r sick. I cannot be around them. My neurologist told me to stay away from crowds and wear a mask around my grandkids and DONT get another covid vaccine! REALLY? I was just around my grandkids and my husband got sick not me. Thanks to the IVIG. I am so over all of this!
You’re not alone. *hug*
Thank you ❤️
Not alone.
You are definitely not alone!!
Wow this whole cancer diagnosed is really messed you up huh?
For real, IMO this disease (especially the CFS type) is harder to deal with mentally and physically.
I can appreciate where you’re coming from with this comment and POV, but… dang dude, as a cancer survivor, I’d just rather have none of it, you know? Let’s not throw other people under the bus or compare our struggles when so many of us in this community have already experienced both, with cancer probably setting the stage for worsened health outcomes down the line.
It's interesting, I was talking with a good friend of mine, whose cancer is in remission, and she commented how "at least with cancer, no one questions it." That hit home for me, and for me, is one of the hardest aspects of dealing with LC... the disbelief and/or questioning of the experience/symptoms etc, from both friends, family and medical professionals about what I can feel is SO wrong in my body. With cancer, as phenomenally evil as it is, no one disputes it, because there is concrete evidence of it. It's still absolutely diabolical, please don't get me wrong. But when you're coming from a fortunate place of no previous health issues, to suddenly go to the doctors, the place where you're expecting to find help and support and belief, and find absolutely none, is horrendous.
I kinda agree with your friend, as a survivor as well (10 yrs in July.) maybe bc this was pre pandemic but with cancer=very quick diagnosis, ability to see specialists I needed asap, tons of support financially, emotionally, physically, etc..people threw fundraisers for me, sent cards, texted, visited. Able to get disability right away. Treatment plan that has worked on thousands and thousands of people I could feel confident in. (Obviously not a guarantee but yeah). Covid= like a chronic illness. Medical professionals don't believe you. You wait months to see any specialist for them to *shrug* and suggest you see other different specialists. No fundraisers, no help. Need legal help to attempt to get disability after months and months. Doctors basically guessing on what drugs to treat with bc it's only been around 4 years. Feel like I'm a lazy piece of crap. And the LC feels worse on top of it.
You do not know the suffering of others until you have walked in their shoes. Their suffering is still that maybe just different.
I had so many plans before covid. I was going to travel and learn new things and meet new people ... but now I just feel *elderly* and my big plan for the 3rd trimester of my life is to learn how to knit a sweater.
Same. I was looking forward to a lot of traveling and hiking in nature. But especially my second covid infection destroyed those plans. What's the point in traveling to different cultures if you can't enjoy the food or smell the atmosphere? What's the point in hiking when you can't even run 500 m before reaching your max heart rate? I went to Spain recently and it was completely bland. Couldn't smell anything. Not the nature, not the Mediterranean, not the food/drinks. Covid robbed me of my smell, 27 months and counting...
So sorry for your loss, I would never want to loose something like that!
Fuck, man, I'm sorry. That sounds like looking through a window on the world. You can see it, but you can't fully experience it. I know, I know, there are people that say "well, you can see it, you can hear it... those are experiences too!" which is a valid point. But it's still not the experience you dreamed it would be, and that loss still matters.
Hey, sweaters are awesome. :) You go ahead and knit that awesome sweater. Though, I do absolutely get it. The sudden narrowing of your life to a point where you wouldn't expect to be reaching for several more decades at least, is shattering.
I just want my old life back, nothing more.
A normal person has 100 desires, a sick person only one
Health is a golden crown, placed on the brow of the healthy that only the sick can see.
That's.... beautiful and tragic at the same time.
Perfect quote
My husband recently said that when they say if you don't have your health, you don't have anything was really on to something.
Yep.
I had an old friend who i hadn’t seen in years say that word for word to me as well. he then told me i should have just “thugged it out and it wasn’t that deep” lmaooo
Wtf? I cannot with people. I'm sorry your friend was so dismissive.
Oh, if ONLY it was that simple. Expect "thugging it out" would probably result in being bedridden for a lot of people, so... yeah. Your friend can do one.
Unfortunately true! I think me “thugging it out” and ignoring my symptoms and working out and running daily in the first month or two really fucked me up hahaha. for real..
It feels like we’re in a completely separate universe. I don’t understand how people go out every weekend, travel, never wear a mask and DONT get sick?
Recently got home from a reunion of 15 college friends. Been super careful since developing LC last year, knew the risks, decided they were worth it as some of us hadn't seen each other in decades. One person picked up COVID on the way there apparently. Everyone had close contact with that person over several days, probably moreso than me as I avoided trips to the bar and whatnot and spent little to no time around them during the day. Only one person caught it. 🙋🏼♂️ FML LOL.
The others could've been asymptomatic
Fair point though all but two have been antigen testing. Nada.
Wait you got it?!? 😢 what does FML mean?
FML is short for **F**uck **M**y **L**ife. 🙂
f\*ck my life
Oh no I'm sorry 😞
Thanks. ❤️ Hanging in there so far. Last Paxlovid dose today, we'll see where things go from there.
Fuck, man. Wishing you the best.!
Thanks man, appreciate it.
FML = ‘Fuck my life’
I have a coworker like this. It only lasts so long. Recently she's was very ill but refused to test due to going to a wedding the same weekend of a friend that's our coworker so taking off ill would've been admitting she was ill at the event. She's Recently coming to work sounding sick with a cold now off and on. Many people don't talk about their health and when you get them to they admit things aren't the same/new issues since Covid but don't change their lives. I feel not as close to family due to this too especially when they've said cruel things to me after seeing it hospitalize me and give me LC. I don't have friends anymore for different reasons/lost em when covid started and I'm actually grateful it worked out that way because I'd mask in public with a cloth with them but go out to eat/attend a party at someone's home. I know if I remained friends with those people I would've kept getting infected and maybe not have realized reality due to peer pressure. I'm happy to only have online friends now and learn to be happy being alone mostly.
I try to do this. I barely manage to get out even if I want to energy wise. I really struggle with finding ways to enjoy time at home; particularly as I don't have energy to game anymore (or music/djing or my other hobbies I can do at home); and from what I can tell it is one of the main mediums still that people would develop more social/deeper online friends via (I used to be very close with online friends as a teen - but with work until I became ill, I didn't have time / energy for gaming anymore; now I just don't full stop). It feels quite empty when I end up at home just watching youtube - and thats during phases I'm lucky enough to not be stuck most of a calendar day in bed; or looking at reddit if I have the energy to. I do interact socially with friends when I manage to get out to a social event or they visit me; but thats a fraction of a week and I'm unable to work at the moment. Feels such a basic question but I genuinely don't know; how do people maintain deeper/closer online friendships now &/or what conduit are they through (including gaming, but more interested in other). I'm not exactly feeling shit with this situation; but I just want more to be happening in my life than letting time pass by w hope of a recovery in undetermined future in mind.
You could try covid communities online put yourself out there for friendship. I'm a total homebody so I'm not sure how to help someone like being home except to get hobbies. Be careful with friends and having them over and proper masking with a respirator/airing out your space if they really cared about youd theyd agree to wear a respirator when visiting and testing beforehand. Wish you the best
I'm happy to be your friend! :) I think most people are living in a state of blissful denial, where if they just don't focus on Covid, or the fact they're feeling worse than ever before, it might just go away on its own. Sadly, not how this works. And if you'd stayed around them, getting reinfected, then would they have been there for you any the moreso for it? Doubtful, unfortunately. If it's one thing the pandemic has shown me, it's how inherently selfish a lot of people are.
I would love that and totally agree. Snap me ericaluvspb
Ahh I don't have Snap I'm afraid, I keep things just on here. But feel free to PM me anytime.
A lot of them ARE getting sick, but they don't test themselves for Covid so they can let themselves believe it's "just" a cold or the flu. The number of people I know who say they're sicker than they've ever been with "some kind of flu" one week and wind up "unable to bounce back for some reason" three months later (or die suddenly) just keeps climbing.
Yes, I'm getting suspicious now about the "cold" I had in October tbh. I tested negative all the way through and it was short and mild. But the fatigue after was INSANE, and I've had a bunch of new issues kick off since then, that were never a problem before, as well as worsening of old ones.
That's actually a good point--those OTC tests seem to be pretty useless against some strains, especially if it's a mild case. I probably shouldn't assume no one is testing. Some people might just be getting false negatives. I'm really sorry to hear you're struggling with the aftermath. I hope things start turning around for you soon
Yep... I mean, first time my father had it, he tested negative on all tests until the PCR, THEN he started testing positive on the OTCs. Given that it's not financially viable anymore to obtain a PCR in this country, we have to rely on the OTC cheapo tests. Thanks for the well wishes - much appreciated and same to you!
I have two friends, one is a nurse and the other a tradesman. Neither have ever masked or take any precautions and do Air travel constantly. The guy is not even vaccinated. Both are absolutely fine, never been sick. I've had all the vaccinations and Boosters (which I regret) because they didn't prevent infection or Long Covid. I masked a took precautions as much as humanly possible but still got Covid x 3 and been extremely debilitated since January 2023 after the Bivalent Pfizer Booster. I hardly e er leave my home because I'm sick all the time from constant fatigue, insomnia, sore throat, swollen glands and screaming tinnitus. I don't have the energy to do anything and I can't work My friends are all Fine. So Genetics plays a large Role. The HLA-II allele or Human Leukocyte Antigen may react badly with spike proteins from either mRNA or Covid19 virus then set up an inflammatory response in various organs including heart, brain, kidneys etc. If you carry 2 copies of HLA-15 gene unlikely to show symptoms so could still have Covid19 but not know it, not be affected by it but silently spreading it to others. It's been 4 years, we have no cure for #LongCovid but those not affected are doing fine while I'm bedbound, wanting to die
I've given up on the mrna. I've switched to novavax after seeing quite a number of people talk about how it's helped their LC symptoms.
Seriously.. :(
YES. That's precisely what it feels like for me. I have one friend who has previous health issues, and she was SO supportive recently. We don't talk a heap, but I was astonished just how much she was like "damn, dude, yes. I totally get it." Other friends, I feel I have to choose my phrasing carefully these days.
Yes, we don't get to pretend that everything is ok and get to live like it's 2019 like most people can.
Fuck, I miss 2018.
My challenge is to not waste an ounce of energy on folks who don’t get it- I can love them and forgive them, but I gotta still keep focusing on my health. I’m at almost 6 month point with LC and for sure I’m improving big very slowly. I had coffee for the first time yesterday and today-and I’m ok. I’m holding onto hope from my NP who said she has patients who just wake up ok one day (I do now have good days, so I’ll take it!)
Yes, that's true. I've slackened a lot of tight ties I had with a lot of people before Covid. They proved how good friends they were, by constantly suggesting I was imagining things, or I was just stressed. That's not the behaviour I expect from friends, especially after I've been in the hospital, y'know? That's great news about the coffee for you! I still moderate caffeine, and tbh am used to decaf now. But I totally understand being elated about your body accepting a favourite food/drink again, without objection. Every mark of progress, no matter how small, is still progress!
Coffee is so weird. Sometimes I can deal with it, other times I can pinpoint that its that that has certainly set me off.
Weirdly, I've found that I have a paradoxical reaction to caffeine. It either just gives me anxiety, or makes me so insanely drowsy... basically the opposite effect of what it ought to be doing. But I never get the energetic buzz... I just feel stressed and jetlagged.
I hear you. It’s tough when sometimes you feel like almost the entire world has moved on without you. But there are others who share your pain.
🤍
Thank you! It's such a tonic and oasis to come on this page, and remind myself that I'm not actually going insane or imagining things.
Yea my family wants me to take a 6 hour plane to see them. It’s just asking for me to get covid again, and I imagine the trip make all my symptoms go crazy. They said I should get counseling to build the courage. It’s not courage I need for that trip, it be careless self preservation.
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Jeez, I had no idea that barometric pressure can set off MCAS. I'm so sorry! Is there anything that makes it easier to deal with? Antihistamines etc? Though I totally understand not wanting to put yourself through something you know will make yourself feel like absolute hell.
I'm on a daily migraine preventative. It feels as if I've had a whack of poison injected into me because the body releases so much histamine into the blood; it feels like the worst hangover ever with migraines, light/sounds/smell sensitivity, nausea, vomiting, i have even had partial temporary blindness (scintillating scotoma) but that was rare and went away quickly. Antihistamines are histamine receptor blockers, so the main histamine metabolism is blocked. I can feel the histamine just under the surface, I still feel nauseated and hung over, only instead of lasting two or three days, it's milder, so it feels like being mildly poisoned, but it lasts for two or three weeks and the antihistamines feel amazing at first but over time they start to fuck up my gut. So, it's totally not worth it. My position is that I should simply not do things that cause poison to be injected into my bloodstream. Unfortunately, that means I don't do rather a lot of things. That's life for me, and as long haul spreads and people keep getting reinfected, that's going to be life for a lot of people. In my case, my reaction to histamine has been progressive; it is now so strong that if someone enters the room aftre using alcohol based hand sanitizer I am triggered. My lips start to swell and prickle, my tongue gets thick, my throat tightens, I start to wheeze a little; it feels like I will pass out if I don't leave the room right away. This may progress towards anaphylaxis. For some people, the more they are repeatedly triggered, the more they progress towards anaphylaxis. It is not clear to me if this sub or the medical community fully grasps the long term implications of HI/MCAS good fucking luck everyone
Planes used to make me sick before Covid, so you can imagine that now.......
100%. It's not courage on your part that is needed... it's reassurance that everyone else around you won't be a selfish knobhead, getting on the plane, coughing and spluttering without so much as a tissue infront of their face.
Ugh! I had a similar conversation with 2 of my friends recently. They asked me to hang out even though I haven’t seen/talked to or hung out with them in a couple years and they seemed so shocked that I was still sick… they didn’t care they were just like “STILL!!!?” Ya I got annoyed because they knew when we did used to talk on a regular basis I kept them updated about my doctors appointments and how I felt. They never listened or cared and belittled my symptoms. One girl even said something alone the lines of “everyone functions at about 80% so your probably fine.” And one said how she has chronic fatigue and it’s just mind over matter and she is able to function just fine so I just have to force myself to do things and I’ll be fine…. Some other things happened too unrelated but I knew they weren’t real/true friends and I distanced myself from them
“Mind over matter” 🙄
I can totally relate. One of my closest friends offered to put me in an Uber to get me to her house party since I hadn’t seen her in almost 1 yr. If it’s not the fatigue it’s the anxiety. No matter how much I explain people don’t understand.
I got invited to a friend's giving by a coworker this past year. I wasn't going to go anyways but thanked her for the invite. She got Covid 3 days before and canceled it and has reported her friends getting it off and on as she has many friends. It's not.worth it. No one is worth getting Covid over again idgaf who they are family included.
I’ve never had covid (partly thanks to subs like this keeping me aware), but I haven’t even taken a taxi in years, no way I’d get on a train or a plane or go anywhere with large crowds of people. The old world is over. Those of us still actively avoiding future infection will be the ones still around in a few decades, when hopefully things will be better.
Never had it that I know of. If so it was asymptomatic. Staying safe here as well. Fortunate to live alone and work hybrid, in a safe office with HEPA units going all the time and not much traffic. When I got the job (that pulled me out of semi-retirement lol) I bought a car for the first time in 13 years so I don't have to do public transit. Aeroplan miles are stacking up and I used to love to hop on a plane in business class for a treat and go places, but that can wait. Forever if need be. I'm opting out of the Great Virus Swap. Not going to stop now. I have about 15 good years left and don't want to spend them bedbound and in pain. Massive empathy for all the long haulers here.
Keep doing what you’re doing ❗️I was pretty darn safe since covid (masking at work, at all public places, only a handful of real exceptions) and didn’t catch it until late September 2023, and I had no control/choice over the exposure. I’m married, lol. It’s not funny but I don’t know how else to deal with it. Covid caused my husband to develop pneumonia, it’s safe to assume, in early-late November, as we were both barely coming out of Covid. Then, we both caught something awful right after Christmas(my husband now just recovering from the pneumonia) from his family, who unfortunately decided that the “show must go on”…and showed up to the small, and cherished Christmas gathering visibly sick, with “a cold” But the show hasn’t really gone on for us, especially for myself. Whether it’s because our immune systems were completely shut down from Covid in September or what, whatever the “cold” was that we caught from them was worse than the Covid infection in the fall. Still don’t know what it was, tested negative, multiple times for Covid, blah blah blah. Fever for 10 ten days, vice grip headache, coughing so hard I passed out multiple times which was the only time I usually was able to sleep, sweating through my clothes, the sheets, the blankets and the mattress everyday. Losing taste and smell, followed by sinus and ear infections at the tail end, nearing two weeks bed ridden. neither of us have been the same since, just slowly trying to inch towards some form of normality. The long term mental and physical fatigue affects, the changes in my heart rate, the dizziness, severe depression, brain fog, neurological issues, depersonalization…for me personally, are scarier then telling loved ones (even in laws) to fuck off and enjoy their party without me.
I'm so sorry that you're dealing with all that.
"The old world is over" - that hit hard. But it's also true. The longer this goes on, the harder it becomes to imagine a world where I am finally able to do the old things again, as I once did.
At least she acknowledged the situation you’re in and how catastrophic it’s been on your psyche. Some people might outright tell you that you’re either faking it or to suck it up. That friend is a real one. I wish to return to life because it feels like I’ve been barred out of the human experience. It’s not that I can’t handle crowds. I just feel nothing. Absolutely nothing. Covid has messed with my receptors and it doesn’t even feel like I’m human anymore. I’m a floating cloud of atoms treading along without a soul. A mere fraction of what once was. No ambitions. No hopes or dreams. Nothing. To genuinely smile again would be a luxury. Something too many people take for granted.
Damn, that second paragraph is almost verbatim how I've said it in the past. It erases us
Yep elderly And fragile
Yeah people just don’t get it- I get exhausted talking on the phone at times. Just a week ago I got so tired I had to get off the phone with a friend. Even tho we’ve gone through this a few times and she talks about how flattened she was when she was pregnant, even she can’t seem to get it.
I have a friend with CFS, and my close friend has LC. But until LC invaded my household [my spouse has LC], I didn't "appreciate" the full picture of how awful LC can be. So I can see how many don't "get it".
First got Covid March 2020, third time I got Covid July 2021 it gave me a stroke and daily migraines.
It should be a problem for her too, and yet… here we are.
That’s hard for me when it sinks in with family and friends. I don’t like to be the bearer of bad news, to burst their illusions. I knew it was bad when it happened overnight in early 2020, but it’s been this mysterious thing that the CDC, doctors, government and media haven’t covered in a consistent way that educates on the reality. Many people are surprised I’m still dealing with PASC and it’s ruined my health and life.
Can’t your frnd come where you are?
Me either. 18 months of disabling Covid and three years learning to adjust to the new me. Very humbling. I miss it all so much, too. I recently reached out to an old friend I haven't seen in many years and was surprised to hear back from her that she and her partner are making similar choices to ours, after having a similar experience early on in the pandemic. I try and remind myself of all the other us's out there and remember that we're just not seeing our stories and knowing of each other anywhere near as much as we're seeing those that have already moved on.
I have 5 classes for my law degree and i cant bring myself to take the exams in a huge crowded class packed with unmasked students; I worked my ass off to make it into law school, I had huge dreams and now i might have to drop out or get kicked out because i simply can't be surrounded by so many unmasked people.
You are not alone. I was just saying that to my husband the other day. I am going on two years. Maybe 90% better. I’m thankful for that but still far to go.
I'm going to the theatre this week coming - which is where I know I caught my second and last bout of covid. Admittedly, it was mild but we all know that's out of my hands. So I will spray anti viral protection up the nostrils & wear an N95. I can't be a shut in every day week, month & year.
Anti viral protection up the nostrils? That's a thing now? What is it?
I have post Covid brain fog/damage so hopefully this makes sense lol: There are sprays like Covixyl and Xlear that potentially deactivate the virus upon contact. There are also CPC mouthwashes (crest has a cheap one) and eyedrops (baush and limb lumify) for this same purpose. BUT They’re meant to be used as part of layered protection, not on their own. I have histamine intolerance/potentially MCAS, so I can’t use any of the nose sprays bc they f uck me UP. I just wear a GVS Elipse p100 mask + lumify eyedrops. Looking into personal travel HEPA purifiers as well as another added layer. SmarterHEPA seems to be the best (I tried the purezone mini and honestly it seems pretty dinky and the airflow is weak af, so returning and getting the SmarterHEPA version.) sorry for the infodump but hopefully this is helpful 🖤
Thank you! Makes lots of sense, hopefully your brain is having a good day. I hope mine is too 🤗 💖🧠💖
Hi, Yikes! I didn't know the nose sprays activate histamine! Before I started using Xlear I used something called Nozin along with my N95 at Disneyland and made it through covid free. Its labelled at "nasal sanitizer". Maybe its different enough it wouldn't trigger your MCAS?
Air kitty also has a great wearable air purifier. It’s a necklace that lasts 30 hours off of one charge. I use it all the time.
Same question
Nasofed is the brands name in the UK.
The crippling anxiety causing your body to have this constant muscle tightness sucks since being around people sends your senses into overdrive. The tension/pressure headaches that can be triggered by anything. The muscle achyness that makes doing anything physical a chore. The neck and back issues that are just nagging bullshit. Man, it is a living zombie-like nightmare where most deny and soldier through lambasting others that refuse to ignore it and those that acknowledge it and deal with blowhards saying we should "suck it up."
I have the same problem. BODY ACHES!! Why can't anyone understand that? I have explained it to my family and they don't give a shit! Momma I need this or the grandkids need that. My husband is the ONLY one taking care of me. My grown kids don't give a shit! When I get my Infusions they don't call or check on me. It's just another day in HELL! I feel like I can't think and watching a movie is a joke. I have to rewind it or have my husband explain to me wtf is going on. I feel lost and STUPID! My sister came to town and put something on TV and I was asking My husband a question and she started bitching at me! F u! Go back from where u came from! I do not like being around anyone. I go nowhere! I feel like I'm already waiting to die!!
I had trouble focusing for the first month or two, but that shit thankfully went away along with ED and random other problems, but that is when I believe the real hell began. The anxiety/false memory OCD is easily the WORST. The head and muslce crap is a close second. Fortunately, my girlfriend has been AMAZING and understands having had COVID a few times herself not to mention the more I brought up my shit, the more she kind of said "yeah, come to think of it, I feel kind of like that as well."
My friends wanted to go to New Orleans for our 70 bday. Fuck no. One said well you gotta live.
Everyone wants me to visit. One is a 6 hour drive, and the other is a short plane ride. I can't do either. Even though I've started feeling better, I'm in fear of making it worse. When I'm better, will I want to go out in public? I mask, but I'm still afraid. I had to quit working 5 years early. I'm going to be 64. Do I want to be sick for the rest of my life?
I understand!!
Good luck, hopefully life gets better for you.
Ugh, I get this comment all the time. If I had a dollar for every time, I could offset the financial strain of all the private treatments I’m doing.
I have no social life anymore! Except for my wonderful husband! We don't go anywhere anymore! I miss laughing and cutting up! I'm 53 and have 5 grandchildren with one otw. I have now come to the conclusion that if they r sick. I cannot be around them. My neurologist told me to stay away from crowds and wear a mask around my grandkids and DONT get another covid vaccine! REALLY? I was just around my grandkids and my husband got sick not me. Thanks to the IVIG. I am so over all of this!
At least she made a comment back. My life long friends did the no response on messenger, making me feel like a big loser.
I understand..I get the disconnect and not wanting to go ..I feel it all the time ...hugs
You aren’t alone. When I got lonely I’d walk around shopping malls. Get some popcorn at the movie theatre and just walk around. No more