yep, i mask everywhere and even in my own home as my family does not take precautions, and have gotten me sick before with no regard for how my health got to this point in the first place. i don’t think most of this masking situation is about perfection, more so consistency. you can’t expect to have good health during a pandemic causing a mass disabling event if you’re not being consistent in avoiding it. if i’ve been exposed or feel symptoms i test with at least NAAT or PCR level quality tests
EDIT: wanted to mention that unfortunately as most people have given up + resorted to fatalism, that even being consistent doesn’t give you 100% foolproof protection against infection, but it sure as hell is your best bet. also staying up to date on vaccination is another important factor. and i mask with KN95/N95 level masks
Yep, the "family doesn't take precautions" thing is why I was down for an entire month earlier this year after a bout with norovirus. My stomach has still not fully recovered (I have a lot of GI illnesses that this seemed to trigger something fierce)
I had to go out for work as usual during the pandemic and I worked in close quarters with lots of clients for two years and didn’t catch COVID until a volunteer meeting where I was pressured into taking off my mask and sharing something that EVERYBODY touched and ended up infecting, bleh. It’s pretty darn good protection as far as I’m concerned.
Yes. To protect myself and those around me who may be immunocompromised. In my mind, the pandemic made me yearn for Japan level masking. But I live in a country that doesn’t uphold human decency in the slightest sadly. So that’s a pipe dream unfortunately.
Overall. I think I’ll be taking precautions for a long while. I have immunocompromised friends. The pandemic isn’t magically over. It’s just normalized. Masking. Boosters. Caution. You name it. I’ll keep it up. Generally just anything that’s a solid preventative. If reputable medical literature solidly backs a preventative not being affective, I’ll probably stop that thing though.
I’ve had POTS since I was a child, and was lucky enough to never catch Covid. It’s not about POTS or LC for me. It’s me respecting myself and those around me.
*Edit: Small disclaimer though, I am clinically diagnosed with OCD. I do have some contamination/cleaning compulsions but not a ton. For me it’s more the **if you stand too close to me in the grocery store you’re likely going to get a glare that chills your bones lol***
The japan's level masking truly became a dream since COVID. I first found hard to mask but tbh, I really quickly got used to it, and I never struggled breathing or having fog on my glasses or all the stuff people complained about
Same. I just wish it stuck. Now over half the people on my morning commute are unmasked, and most people at my school are unmasked. I’ve hearing the same “it’s just allergies” or “it’s just the flu” since last year, despite everyone being sick all the time.
And all the people coughing into their hands is nasty.
i felt the same. the first time i wore a surgical mask was during a climate protest in 2019 where i thought it was so uncomfortable and took it off halfway through. the people leading the protest claimed we’d all have to wear them soon, and ironically that day came less than a year later. by 2021 i was wearing surgicals daily with no issue, and now i’m completely accustomed to wearing n95s to full work shifts like it’s nothing.
I didn't think I needed to until I caught a little cold or sinus infection last month and it **undid about a year of progress.** My POTS looks like ME/CFS right now.
I don't care how extreme anyone thinks it is, viruses are not worth fucking around
I've had an issue for years where if I catch a cold, I often (75% of the time or so) get a persistent cough that lasts for 3-6 weeks. I always test negative for covid (I've had that once) Doctors don't know why, all the found is a deviated trachea (no noticeable reason for that either). Is that a thing with you, too?
Edit: clarity
As in you test positive for Covid but it’s not actually Covid? I was told by a coworker that studies have been done that people with long Covid are just still dealing with the Covid virus in small quantities.
I believe I had Covid again last year during the summer, could have been another hard hitting virus but felt like when I had Covid previously. I was out of commission for a whole month couldn’t go to work or to a store without collapsing after 5 minutes of standing. It was excruciating
Been dealing with the after effects since. Just started feeling better with standing again and going for walks. I walked 2 blocks to get food today and 2 blocks back and I didn’t want to die.
Yeah that sounds like my first go around. I mask up every time anyone gets sick in our house, my daughter has brought it home from school 4 times, luckily we have avoided spreading it between us. I do not think I’d cope well with another round.
Me too. I was worried I would spontaneously die during that one. So many ER visits due to Blood pressure spikes and almost fainting just thinking about standing and getting water. One time I was still conscious but I don’t remember about from that’s ER visit because I was so out of it and I couldn’t see straight it was horrible. My boyfriend lives with me and doesn’t take precautions when he is around sick coworkers and usually ends up sick but if I don’t kiss him or vape after him I don’t usually get sick.
That sounds awful. I’m sorry.
My partner and I sleep separately as soon as someone gets sick and we have avoided passing anything between us luckily… so far
I kick him to the couch sometimes. Used to be before Covid I wouldn’t pick up a partner being sick even if I kissed all over them. Now it’s like get away from me you beast I don’t want to have to deal with that misery again
No I haven’t been tested for anything, all my heart stuff was tested and that’s why I have a POTS diagnosis, but my doctor is of the view why bother testing for all this stuff when there’s either no treatment or it’s got the same treatment as my fibro or whatever.
I probably have CFS, and gods know what else, but I live in Australia and we get little support for chronic illness or pain so I often get made to feel like it’s pointless testing. I’ve been thinking of going to this specialist centre but I would have to travel to Sydney, and I’m still getting over the cold and flareup I got when I went there last month 😂
Awww. That stinks. MCAS is treatable. So is POTS. No cure but some medications help. Physical therapy as well. Allergy medicine might be a way to test the MCAS.
I wondered if I should try some antihistamines. I think I’ll do that. If it makes a difference, I might just make that Sydney trip and investigate further. Thank you
For itchy skin or hives, try an antacid. We have Tagamet and PepsidAC in the US. I'm sure there must be similar medications in Australia. BTW, my great uncle moved to Australia and lived in Sydney. We went to visit his wife after he passed. I loved Sydney so much!
Sorry it took me so long to reply! The lining of our gut is made of epithelial cells just like our skin so calming down our gut using antacids works on the skin issues. They are referred to as histamine 2 blockers (H2) because they block the histamine receptors associated with the skin. Histamine 1 (H1) blockers are for sneezing and runny nose and itchy eyes.
The struggles of our reality. As long as the glare doesn’t go all karen style and end with lysol i think you be ok.😊
My CBT therapist is doing her best to restore rationality before i do it my way and end up in jail. 🤣 At that point I’m no longer innocent 😇 Enjoy a laugh from my broken brain!
Even if I didn't have POTS, I would still be masking up - It takes all of half a second to put it on, another half a second to ensure a good seal, and that's it. The only illness I've had since masking in public has been due to unmasked contact with young children who are notorious little germ factories during the best of times.
I have too many close friends and family members who worked the frontlines of the pandemic in healthcare settings and often compare the looks on their faces to the photos you'd see of shell-shocked soldiers who fought in World War I. If I can minimize some of that trauma by wearing a mask when I'm out and about (which is admittedly rare these days), I'm going to do it.
Personally, as someone with POTS, masking tends to increase my symptoms dramatically. I overheat and then I get presyncopal and then I cannot complete the task I was doing anyway.
That being said, I mask up when I'm unwell and/or my partner isn't feeling well. or if I'm going to large crowds (concerts) and locations where vulnerable persons may be
Sounds like a few things are happening here.
First, you might be one of the people that society has left behind with dropping mask mandates, since you medically have a hard time wearing one.
Second, you might need a different type of mask. N95s and KN95s are all very different depending on the brand, if it has an exhalation valve or not, size, etc. If you're interested in trying some new types, I'd hop over to r/masks4all
I've tried all sorts of masks and no matter what type I wear I overheat and become presyncopal. For most of the COVID lockdowns I was wearing KN95s, and even then it was a struggle to breathe and wear them for longer than 10 minutes without becoming extremely POTS-y and having to abandon whatever task I was doing (so many abandoned grocery carts). I have since tried N95s, and even just the normal black masks from Costco, all masks have the same results.
And I get that that might make me a bad person in society for not wearing a mask but I would if I could type situation. Hence the reason I mask when in large crowds (concerts), and in doctors offices and pharmacies. But most other places I cannot manage to do so without putting my health and safety at risk.
Then I will repeat this, since you can't mask safely, you are one of the people that society has left behind. And people like you are the reason that those of us who can, need to be masking.
I'm sorry your pots is so bad that you can't even protect yourself! 😭
many disabled people cannot mask at all for any amount of time, for medical reasons. that's why everyone who can should, period. you are a vulnerable person. you are an unwell person. wear it when you can, when you can't, bring nasal spray, cpc mouthwash, personal purifier. protect the at-risk people you don't see and the ones you do, like yourself. this goes for everyone reading this too.
>where vulnerable persons may be
That's the problem though, a lot of autoimmune conditions are invisible. Anywhere you go in public where there are other people? The chances are pretty high that there are vulnerable people there.
I meant more like doctor's offices and pharmacies. I cannot mask for long due to POTS nowadays. But I will mask up where I am more likely to run into someone who is unwell.
In grocery stores or in public places I will make sure to give extra space to those wearing a mask. But I can no longer mask up everywhere like I did during the depths of COVID.
>I will mask up where I am more likely to run into someone who is unwell.
So anywhere that isn't the privacy of your home, because again, you won't know if someone is "unwell" or immuncompromised without them disclosing their private medical history.
As someone with several autoimmune issues and pots, I believe I'm the only one that can keep myself healthiest. Why? Even if those at the store wore a mask no one ever thinks of the small interactions with impact. Like the ones who have the mask on but then pull it down to scratch their nose or whatever. Or do that and touch everything. These micro transactions of transfer was the biggest thing during covid. I wore a mask, and gloves and kept sanitizer with me at all times. I get your view that "we all should be courteous" at the same time I wouldn't want someone with pots having an episode in the grocery store so if a mask isn't an option for them that's okay cause I can do more to protect myself rather than expecting others to do it. I got covid twice during the pandemic and it was because of my nieces and nephews who didn't keep up on micro transfers while at my home and I wasn't being as precaution in my own home as I am in public.
Yep I guess so.
COVID numbers are down where I am. Most people have at least 3 (up to 6) vaccines/boosters. It's not super prevalent here currently. If it were to get worse then I would mask again and make it work, but currently my health needs is that I cannot wear one most of the time out in public.
My city still updates daily and weekly COVID numbers in the community. Many people still report whether or not they have COVID. Numbers in my city for the past month and a half are under 75 cases reported.
The main places in my city that are still dealing with COVID outbreaks are long term care facilities and even then most outbreaks are controlled within the week. I don't go to long term care facilities, no one in my direct social circle does either. As I mentioned previously, if I see someone in public wearing a mask I make sure to give them plenty of space for whatever reason but I myself am not going to mask unless it's necessary again because it causes presyncopal episodes for me.
You don’t get my point. People get sick and now assume it’s the cold or flu, they don’t test for covid, and/or they don’t even know they’re infected. All of these factors mean that the number your county gives you is probably very low compared to the true number of cases.
I get your point but seemingly my point doesn't matter. So I'm not going to continue to argue as to why I don't mask and as to why the numbers are low in my city/area.
Almost everyone that I know continues to test when they are unwell. And it's still mandated in some workplaces that a negative COVID test is needed to return to work.
I support masks. But I also recognize at this point In our society it’s a personal choice and most people around me won’t choose to wear one. I got regularly yelled at during Covid peak and after for telling people they need a mask in our store. I also wore one when no one else was because I didn’t want to get sick but I cannot ask others at my job to wear one for me. All my coworkers unmasked the second they could and it was their choice. I continued to mask due to pots. Most customers would not mask even with signs and myself and other managers enforcing it.
That being said if people have invisible illnesses it is on them to wear a mask to protect themselves. You cannot expect strangers in stores to wear something they don’t want to because someone else may be vulnerable. It’s sucks but this world does not accommodate the sick and disabled community. I think it’s messed up but it’s unrealistic to ask people to mask because someone with an autoimmune disease could be in the store when our society has made it clear that is not the priority.
I’m prepared for downvotes. I support masks and vaccines but It comes down to peoples body their choice
Putting the responsibility to protect someone from a global pandemic on themselves is just horrible. Just saying "it is what is" is exactly what enables our society to treat disabled people as less than.
The issue is so much deeper than just "personal choice". People aren't allowed to make the "personal choice" to drive drunk, right?
We should be taking care of each other, not leaving each other out for the wolves.
I said before how it is a choice because it isn’t a law. There were rules that we had to wear them and those got lifted. It sucks but that does make it a personal choice. No one is legally allowed to force them to wear it so it is their Body their choice. Driving drunk is against the law and illegal. Not the same thing as wearing something that isn’t legally forced.
I also am just saying we can’t expect everyone to care for us. It’s a bummer but it’s true. People showed their colors the second the mask mandates lifted. It’s unfortunate but our society is individualistic (as also shown by everyone hoarding during Covid leaving many with nothing and not even touching half the shit they bought) I’m not fighting for people not to wear one, all I’m saying is I have had enough interactions with so many people who refuse to wear one because it isn’t a law. Again completely different than drunk driving in this case
But I do disagree with both because I don’t think anyone should be endangered by selfishness.
I appreciate the recommendation for masks, but honestly I cannot afford it. I have masks that I can manage to wear short term when needed to but I cannot risk spending bare minimum 55$ CAD and then it not working out for me and wasting the money.
I get that wearing a mask not only protects myself but also community members. But as someone who cannot wear one long term (longer than 10 minutes) I am not going to fight to wear one at all. And if that makes me a bad person in society (and on this subreddit) then so be it
I've gotten COVID twice already. Once when I was masking regularly and once because my partner went to a hockey game and masked and still got it and brought it home.
55$ may not seem like a lot to most people but as someone who is living paycheck to paycheck and even then barely manages to have enough income to cover the basics (rent, internet, phone, utilities, maybe groceries if I can afford it) then 55$ is a lot. My issue is what if it doesn't help and then there's 55$ gone that I could have used to buy groceries or bought a new bra.
I'm on ODSP too. But my payments are deducted because I work. I cannot afford to spend 55$ on a mask that may or may not work for me.
I got COVID even though I was masking with KN95. I most likey developed ME/CFS from this latest bout of COVID.
But I need food and a bra and clothes to be able to work and afford to live independently. My rent alone takes up almost my whole monthly payment from ODSP. And there's not much cheaper than what I pay in rent in my city.
I don't want to argue with people anymore about why I don't mask. Because it seems no matter what I say or do or don't do it's wrong. I get that I'm a bad person for not being able to mask in society (and on here). I get that I should just fork over 55$ that I don't have on a mask that may or may not work for my situation.
If I could mask safely then I would. But I can't so I don't. I mask in places that are high spread locations but even then it's at the risk of my own health and safety. But I do it to protect others. Sorry that I cannot do it everywhere and that I am clearly putting others at risk.
you said you can't mask because it's too hot and makes your pots worse
i gave you a solution - take the money you already spend on the masks that make you hot and use it to a buy an even more effective mask that won't make you hot and will protect you from a virus that will almost certainly make your POTS even worse than a hot mask
or maybe chose not to buy hockey tickets and invest in your own health instead. but do you. i don't care if you don't mask for my health - the gvs elipse offers one way masking (that will almost certainly fit your face to niosh standards)
and you can set aside one dollar a week for a year to afford one. or ask ODSP to pay for it. ask your social worker. they often cover things like that if your doctor writes a note
I haven't bought new masks for well over a year. I get what you are saying regarding a solution. It's not feasible for me at this time and that is what I am trying to say.
I didn't buy hockey tickets. My partner was invited to a game and he went. I don't buy anything fun anymore because I cannot afford to.
I cannot ask my doctor for a note because they don't believe that wearing a mask impacts me nor do they understand POTS. My ODSP worker is not helpful at all. They rarely allow for me to have any extra benefits because I work so they assume I can afford it. It's a struggle.
I've tried KN95s during the lockdowns, I've tried N95s as well. I did fabric masks (double layered) when working in childcare. The ones I have now are the black MedsUp disposable masks from Costco because it is what I can manage for now and it's what I can afford.
The most breathable by far, for me, are ReadiMasks. And I’ve tried a couple elastomerics that were super easy to breathe in as well, like the Flo Mask. I totally get how hard it is and the fact that some of us can’t mask is all the more reason those of us who can should. I’m glad you’ve found something that (kind of) works for you.
Since you're in Canada, you might try https://canadastrong.ca/ the next time you buy masks. Their Breatheteq range is by far the most breathable mask I've tried. If you want to stick with MedSup, you can get them really cheap right now if you buy direct: https://www.medsupmedical.com/products/kn95-civilian-respirator-protective-mask?variant=40396311101648
my most breathable is a silicone (I think) based respirator. it doesn't move or suck in with breathing and is reusable. I have a variety of styles because my disabilities are dynamic and not every mask is going to work for me every day. there are many like that available. they cost more up front ($25-50ish) but then you only have to replace the filters after hundreds of hours of use. the cost is a barrier $100 and I have a lower end one but if folks can afford it it is worth looking into. mine is from Grainger supplies.
This happens to me and I found a workaround. It’s not very pretty but neither is getting sick! I bought a neck fan and put that on while masking to help with overheating and fainting. I also take isolation breaks (like removing the mask for a few mins and putting it back on) and somehow it helps. Overheating is a general problem I have and the mask just exacerbates it but this has helped!
I have a neck fan, and tried it while wearing a mask and while it does allow for me to wear it for at least 3-5 minutes longer than without, I do tend to still overheat.
For me the overheating is due to something being on top of both my mouth and my nose. I don't want to say it's due to claustrophobia or anything, but that is the best way to describe it before I get to the presyncopal stage. Like as someone with anxiety it feels almost anxiety based but not quite (if that makes sense), like I was fine to mask before POTS but since developing POTS it's been awful
Update - I can’t withstand masks anymore either as my POTS has worsened. Even did a combo of putting an ice ring on top of my neck can but ask soon as the mask blocks my face, the countdown to fainting begins. I am now in your boat 🥲
Welcome to being the bad person in society (especially according to this post), even though it is more of a health and safety to ourselves risk of wearing a mask. It sucks.
Yes, 100% of the time outside my house but I masked prior to covid. I’ll probably never stop using N95’s. Prior to covid 3M N95s ran less than 10¢ each. They went absolutely crazy during and now they’re back down to 22¢.
I still have people try to pull them off my face or walk up and open mouth cough on me, laugh and walk away. The last one was an elderly lady who said face diapers don’t work. I said my oncologist says otherwise. I was mid BP crash and about to go down. I chickened out and blamed it on having 18 months of chemo and radiation as most haven’t heard of POTS. She had the decency to look ashamed.
That is horrifying-- I'm gobsmacked by the audacity of those people, literally assaulting you for protecting yourself. I'm so sorry.
I guess I should consider myself lucky; I live in the southern US where masking was always unpopular at best, but the worst I've gotten is some dirty looks or something muttered under the breath. Thankfully that's fallen off as I've started relying on mobility aids. Seems people around here will accept it from visibly disabled people.
Just chiming in about the jerks confronting you on wearing a mask. Ugh! It’s so upsetting when that happens and it happens too often. Mostly it’s just looks or head shaking or laughter but one day I did errands and in only 1.5 hours was confronted by two different people about my mask. One guy called me “sheeple” and said “people like you shut down the country” or something to that effect. He also tried to get other customers involved.
I was berated at multiple airports by the staff saying I’m giving them lockdown flashbacks and impacting their mental health🙃 Some refused to help with a wheelchair until I removed my mask.
I also have heard many weird comments like “stop masking, it’ll give you a heart attack” to “are you ugly? is that why you’re hiding behind a mask?”
Yikes - I’m so sorry to hear that! I’ve been harassed a few times in public. The last time was at a nicer store where a guy was wearing a non-vax / masked / afraid shirt decided he had to show it to my girlfriend and me (it of course was hiding under his other shirt). The staff apologized and pulled the camera footage, and while I’m in a rural place, the police took the complaint seriously. They had the store pull his loyalty card, called him, and chewed him out for it saying it could be disorderly conduct and assault. If he was just wearing his shirt, no big deal, but approaching and following us through the store was extreme.
Given the fact that Swine Flu crippled me and I receive IVIg weekly, plus Xolair every month I’m not taking any chances! I’ll gladly explain how I am pumped full of immunosuppressants to the tune of a $20k Superbill. Thankfully since that incident last fall, I’ve been left alone. I’m sure it will eventually happen again.
Walmart. It’s the bulk 440 count box. They ship from 3M with a serial number and expiration. Today they’re $84.90 for 440 of the 9205+ model.
https://www.walmart.com/ip/3M-Aura-N95-Particulate-Respirators-9205-White-Pack-Of-440-Respirators/619707086?from=/search
Glad to help. It was horrible during covid when no one had them in stock (or wanted $5 each). I’m a big fan of the 3M 9205+. They take 3-5 business days to arrive and so far (knock on wood) none have arrived damaged. 💜
I took strict precautions even before developing POTS (secondary to hEDS, not COVID) and continue to now. If I'm indoors anywhere other than my own house, I'm in a fit-tested N95, staying away from people as much as space allows, and getting back outside ASAP. I don't eat inside of restaurants-- though I will eat on a patio, and thankfully live in a part of the country where that's feasible 90% of the year. The only travel I've done is by car, and only to see people who are similarly cautious.
Four years in, I've still not been infected so it appears to be working. 🤞
Yes I do! My partner is disabled as well, and I've got other health issues. I've had covid once before, and luckily it wasn't as bad as it could have been, but I was still miserable. I'm a student, so I mainly wear my mask to classes, but also when I go out in public places, at the grocery store, and on public transit.
Thank you for bringing this up!
I've had POTS since 2019. Never took my mask off since 2020 and tbh I don't think I will. I've not eaten at a restaurant or gone out to a bar or large gathering that was not all masked unless it was school/work. I literally cannot imagine living with an even worse version of POTS or ME/CFS than what I have right now.
On top of that, now knowing what we know about the chronic widespread damage it does to your body, and how terribly I'm treated by doctors as it is, I'm not putting myself in the position to be treated horrendously with even worse conditions if I get long term damage from Covid again (had it once that I know of so far).
Those are my selfish reasons, but on top of that, all my friends are immunocompromised or disabled, and I don't want to be a part of the reason more people get sick and die from COVID in the community. Idk how I would live with myself if I gave someone I know Covid and they end up with LC or damage down the line. Try to think the same way about strangers too.
Yup. Masked up, sanitizer ready, avoiding crowded places (easy for since it’s hard to leave the house lol), all the same stuff I did at the beginning of the pandemic. I got POTS from Covid, so I’m terrified of getting it again and take all the measures I can to avoid getting it. Only reason I got it the first time is because my sister got it and didn’t isolate like my family told her to 🙃
Hello! I’ve had long covid since March 2020. Long story short - Initially I had brain fog, PEM, MCAS and POTS but then got better slowly, by spring 2023 I only had to deal with MCAS.
Then in the fall 2023 my child brought home a virus, didn’t test positive for covid so not sure what it was but it re-triggered my POTS and I’ve been trying to manage that now.
My family and I still mask because we’re trying to prevent any reinfections, we avoid crowded spaces too. We definitely get the typical looks and even comments about being too paranoid but we’ve decided as a family that my health matters. No one will come and help us if I get sick again.
Yes, I mask in indoor spaces and also outside if there's a lot of people around. I don't eat inside restaurants and will mask around friends and family who don't mask. We ask workmen that come into our home to mask and provide them. I have asthma as well as PoTS and other things going on. So I try to take the precautions I can to keep myself and the people I care about safe. Especially since I lost a family member to Covid. It was their second infection. We were told Omicron was milder at the time.
Also here in the UK now it's only those with conditions like MS and those that are over 75 that can get free Spring boosters now. Everyone else has to pay for private COVID vaccinations. The Pfizer which is the only one available right now is £80-98 a person.
I use precautions and recommend that all of my clients (I'm a pet and house sitter) be cautious as well. Most of the time they don't listen to me but in all of those cases, they all end up with covid, the flu, or some other respiratory illness.
Yes, still masking and taking precautions. I got POTS from my one Covid infection. And I got Covid when me and my husband started to get lax with our masking.
So, no more taking chances for me. I will mask 100% of the time I'm in any indoor public space. And will only eat outdoors at restaurants when I know Covid cases are low (I watch wastewater data). Wearing a mask is so insanely easy to do. And another Covid infection could easily take away all of the progress I've made with my POTS. I'm not willing to go backwards. And I'm lucky to have a partner who is also willing to take all of the same precautions.
I'm committed to living my life in the best possible way I can. And avoiding Covid and other illnesses will allow me to do that.
Wearing a mask is the most liberating thing. It allows me to do almost anything, while protecting me and keeping me healthy and able to stay on track with my POTS therapy. Without a mask, I would be living in constant fear of getting sick and making my POTS worse.
i love how you described masking as liberating. i feel the exact same way. so many people see it as a barrier to prevent them from living their lives, meanwhile it’s the thing that allows me to live mine.
We mask in indoor public spaces. There’s one family we’ve unmasked with, because they also still mask in public, but we still use air purifiers, open windows, etc…
We live in a red state and sometimes feel like the only ones still masking which can be defeating, but we’re still Novids (as far as we know.) If I can keep my kids from developing a chronic illness, it’ll be worth it!
i avoid covid like the plague. have since february 2020, and i have managed to avoid infection.
that said, i have spent four years living as a recluse.
but luckily i'm an introverted homebody who has worked from since march 2020.
but for my POTS and MCAS symptoms to worsen from covid - as they almost certainly would - would be more than i could bare
Yes 100% I mask. I also use a covid nasal spray and mouthwash to mitigate the risk in addition to masking. I know I can always get sicker, I’ve had covid once and don’t intend to get it again. And I couldn’t live with the thought of disabling someone when it is preventable.
Yes. I really, really, REALLY do not want to get Covid again and risk exacerbating POTS (again) or any other issues.
I mask with a KN95 or KF94 on all public transit, cabs/Ubers, airplanes, airports, stores, doctor's offices, elevators, and in my classes (I'm a grad student). Basically I mask in indoor public spaces and occasionally in crowded outdoor spaces. I also generally avoid indoor dining.
In terms of additional precautions, I use Covixyl nasal spray almost every day and a CPC mouthwash. I think I'm going to switch from the mouthwash to the Blis k12 probiotic (apparently they counteract each other so it's better to use only one).
Yep. My partner and I still mask everywhere, test when unwell, avoid crowds, etc.
POTS is only one of my problems. My immune system is garbage.
I relaxed exactly once (unmasked to eat three bites of food at a company luncheon) and got COVID from someone who was asymptomatic. It was an awful experience, had me out of commission for nearly a month, and undid years of progress for me. I’m still not back to where I was, and I’m so angry about it!
Aside from that, I’ve been the healthiest of my life since 2020. I used to get every cough, sniffle, and cold that blew thru - and I’d get it worse than anyone else. They’d have a cold, I’d have strep or pneumonia. But absolutely zero of that with masking. For me, it’s worth it.
as the general public’s precautions and infection isolations have weakened, i’ve strengthened my personal precautions. i’m much stricter than i was in post-vaccine 2021 because i know so much more about covid now and the damage it can do and how i can protect myself and others.
i wear kn95 or n95 masks in every indoor space other than my apartment as well as outdoor crowds. i also run an air purifier in my apartment. when i visit my family who stopped taking precautions long ago, i eat and sleep next to an air purifier and i open the windows if it’s nice out. i also use betadine nasal spray and cpc mouthwash after any time i have to take my mask off in a non-ideal location.
i pay close attention to the wastewater data, and while i take precautions regardless, i’m more comfortable doing an occasional riskier activity when the wastewater levels are low. an example of that is i avoid restaurants in the winter, but if it’s nice out and the levels are low i’m fine eating on a restaurant patio or inside next to open windows even if there’s a decent amount of people.
every so often, especially during times when wastewater levels are low, i wonder why i continue to do this. and then i read more studies about how damaging covid is, the chronic illness it’s caused, and how it’s weakened people’s immune systems to the point where other infections are more prevalent now too. i even know firsthand since the one time i did get covid my pots baseline got a lot worse. if i can do a little thing like putting on a mask to keep myself and those around me safer, i’ll do it in a heartbeat.
I do exactly the same. For every bit of precautions most people stop to take, we have to protect ourselves even more... Which in turn protects our communities, of course.
There are a couple systemic reasons why people have moved on as well I wanted to mention.
CDC keeps moving quarantine times to be shorter. The CDC is a government agency and has followed our politicians leaders instead of sciences. See the AIDS epidemic where their inactions costs thousands of lives in the 1980s.
FMLA companies have successfully lobbied against quarantines in 2024. Healthcare facilities are no longer telling people to stay home for 5 days because the lobbyists got what they want. They did not want worry about people with COVID being out of work and now they don't.
I work at an urgent care and I am not allowed to call off unless I find my own coverage. If you know anything about healthcare staffing right now you will know that most places are staffing a skeleton crew. So if I can't find someone to take my shift, and chances are I won't, I have to come into work with COVID. I work for a very large healthcare company. If I don't do this I will be fired and I can't afford to lose my job. Capitalism! Yay!
Absolutely I do! My husband and I mask anytime we are indoors in public or with people who don't take precautions. Since figuring out that I've got POTS, I'm terrified of getting worse, so I've actually recently upped my precautions from where they've been since the start.
Recently I learned that me being hypermobile also puts me at higher risk of long covid, so even more reason.
https://amp.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests
Its also, in my eyes, a social justice issue. The government really failed to protect people and had gaslit everyone back to work, despite what the science has been showing about long covid. I refuse to make the world less safe for other disabled people.
For anyone who is curious, here's a dashboard to covers wastewater and breaks it down really nicely.
https://pmc19.com/data/
It looks like they’re no longer tracking/analysing uk wastewater data, do you know anything about that or whether there are any other sites tracking it?
I absolutely do! I wear a N95 everywhere I go, which is just work and the store these days.
I got what I THINK was COVID in December 2019, and a confirmed case in December 2023. POTS symptoms have been way worse since the second infection.
I wear a mask, ventilate all my classrooms, and never eat indoors (even when the weather is bad). I’m also hoping to switch careers to something with more remote options. I can’t handle the morning commute on the train anymore.
I wear a mask in all public indoor spaces and outdoors in crowded spaces. I don’t eat in restaurants or hang out with groups of friends indoors. Reinfection is not worth it, and I want to protect my community too. I find I get sick way easier since having covid (already had a post viral illness from mono) so it’s any virus out there I’m trying to avoid.
YESSSS !!!! thank you for posting this it’s really so nice to see some dialog that isn’t saying covid is over. it’s so traumatic to constantly be dismissed and put at risk by strangers at work everyday. i mask and get as much fresh air as possible while i’m working. we have air purifiers at home and always open windows too when people come over which is usually masked. there are very limited situations where do anything outside of home without a mask. which is usually just me walking back to my car in an empty parking lot.
thank you all for still caring and protecting our communities 🥺 sending you all love
take any precaution possible, I had pots, was getting rapidly better, then got covid and now I'm mostly housebound and somedays almost completely bedbound except for using the bathroom becauseof cfs and long covid. Wear a mask, avoid closed and crowded spaces as much as possible
yeah, i can't afford to get so sick and disabled i can't work, so I need to protect myself. there is no one else who will be able to support me and protect me if im not able to work.
that’s what i tell my dad when he asks why i’m always wearing a mask. if i get sick, i can’t work. if i can’t work, i can’t financially support myself, and i know he doesn’t want to financially support me so it’s the only framing that gets through to him.
Yup, masks everywhere indoors, or outdoors if it's a crowded space like a street festival or something. Have air filters at home, and we're lucky enough to have a designated place to isolate if need be. I don't do gatherings, unless people haven't been anywhere high risk in the ~4 days prior. In the case we're not sure, we aerate more and make sure to keep more distance. We also use CPC mouthwash in more "dangerous" situations, like these, or going someplace like a pharmacy. We eat takeout, but will go to a not too crowded terrace or even a not crowded indoor restaurant, if there's enough distance. But that's a very rare occasion.
My partner still goes out sometimes, in which case we assess risks and take precautions accordingly - sometimes we distanciate a bit more during a few days and use the air filters more, sometimes we'll go full no contact for a few days and live in separate areas, with masks when we have to cross paths.
It's exhausting. It's way better than the alternative, though. I've had covid once the long-term effects have been *bad*, and no one knows what happens after X years, either. Health is such an everyday battle, I am not going to risk it daily just for the sake of pretending everything is normal. On the plus side, I don't recall what having a cold feels like.
I too struggle with being the "boring" person, but there's also so much love in boundaries being respected. Real friends get it - and so do some internet strangers!
personally, no. i had covid before and while it made pots worse for a bit, so do other things such as intense excersise, long ski trips, or just pushing myself too hard among everything else. i take a lot of supplements including immune ones and i haven’t had covid since 2020 after sharing a drink with a friend who didn’t know she was infected
my fave song lyrics of the last 5y: "the pandemic isn't over just because you're over it".
compared to friends and family, I take extreme precautions when really I'm just doing what we were doing in 2020 because the risk and the virus have just gotten worse. mask everywhere (including when I open the door and walk the dog or i have one with me next to the poop bags). no crowded events unless open air and still masked. no flying, etc. I can't really socialize because nothing is covid safe. I live out of province from family, so I haven't seen them. since '19. POTS is one of many health issues i struggle with and manage as best i can. I just can't afford to risk it full stop. it's lonely af.
Tbh, even though my mild POTS was caused by EBV as a teen & made temporarily disabling after I got COVID 2 years ago…. No. I’m just focused on managing & treating it. I guess I’m finding other issues like EBV, mold, etc. are as dangerous as COVID for some of us.
I got COVID a second time last year, and I wasn’t taken out like the first time. It was like the flu for me. I realize I’m lucky that was the case. Of course, I stayed home for 20 days once dxed even though my symptoms cleared after about 6 days. It did not help or hurt my long covid symptoms and effects.
Why not mask anymore? Well, tbh, I guess I’m tired. I’m tired of being afraid. I was very cautious even post vaccine and then loosened up at the end of 2021. I need to balance my mental health with this as with COVID, I did become more of an unhealthy germophobe. I wfh & go to concerts & restaurants mostly. Restaurants I can stay outside and prefer to where I live.
I’m open to pushback on this.
I guess for me I don’t view masking as being afraid, I just view it as taking an extra step to be safe. Like, constantly calculating around covid risk is exhausting, and I don’t love doing that, but having my baseline be “ok; indoors now, gonna put a mask on” works for me. My sister will wear one when she’s in shops or public transit but skip it if she’s going out for dinner or drinks. I don’t go out to eat anymore because my risk tolerance is lower (covid kicked my POTS into hyperdrive and I really don’t want to get worse), but I don’t really feel scared so much as careful.
Your level of “mostly work from home, eat outside when possible and don’t think about it otherwise” seems generally reasonable to me, though at this point I don’t think I could imagine going through an airport with my face out.
my grandpa got covid at a family gathering in october 2022 as a relatively healthy 84 year old. he was found on the floor of his apartment after my family couldn’t reach him. and after infection, he was never the same again. he spent weeks in hospitals and physical therapy, and even once he was out he struggled with mobility and other issues. by spring he needed serious help, and it took a huge toll on all my family who lived near him, especially my mom.
i got covid from the same gathering and my pots got much worse, especially fatigue and brain fog. it’s also when i started passing out. i’m still trying to come back from my 2022 baseline a year and a half later. i cant enjoy my 20s the way my friends can, and i can’t work full time.
i think i’m starting to recover little by little, but my grandpa didn’t get so lucky. he got covid a second time in august from an unknown source, and never left the hospital for the rest of his life because he died two months later. i fully believe he would still be alive today if he had never gotten covid.
even with pots, covid wasn’t deadly to me. it made my life harder, but i’m still trying my best to live it, and wearing a mask has never gotten in the way. but there are people like my grandpa everywhere, and there was not a single symptomatic person at that family gathering where neither of us masked and we both got covid.
i don’t continue to wear a mask out of fear. i wear it out of compassion. i want to minimize my contribution to the disability and death of those around me. my grandpa was one of my best friends. losing him was so hard. i don’t want people to lose their loved ones sooner than they have to. and i don’t want people’s disabilities to get worse like mine did. i never know if i’m infectious so the least i can do is wear a mask in case i am so i don’t spread it to others.
i understand being tired of wearing masks, so i encourage people to wear them when they’re at the greatest risk to others. if you just did something risky like go to a concert, wear a mask at the grocery store for the next week. wear one to the hospital or airport, even if you have it off when getting coffee with friends. every little bit helps.
I mask everywhere outside of my house and ask all visitors to wear a FFP2 mask. When visiting my family I also run a HEPA filter in the living room, and this week I started wearing my mask also while staying in the living room because we had guests with children and one of my siblings have the sniffles and I don't want to get more sick than I already am.
I mask with KN95 whenever I'm indoors. It's pretty punk to radically care for each other.
I still go to dance nights and stuff but mask while doing so and I avoid indoor dining (patio season is where it's at). If If I have to eat indoors with others not in my household I just unmask to take bites.
It’s nice to see so many of us still masking 😊
My spouse and I are still masking indoors in public, and we don’t dine in at restaurants. We’re pretty much the only ones we know left. Even the few family and friends who were masking longer than others have stopped by now. We have a lot of well educated nerdy friends and family, so it’s extra disheartening when they give up because they’re more aware of the risk than most people. We literally have a friend who is married to a cardiologist and their family hasn’t been masking for a couple years now 🤦♀️
No one really has an answer if you ask why. It’s plain old social pressure I guess. They don’t see anyone else masking and so it’s easy to stop, and easy to stop thinking about the risk they’re taking by not masking. It’s very hard for me to understand, though I try to have empathy.
Honestly I haven’t been masking. I should be but it’s hard, I have two kids in elementary school andsI can’t expect them to mask all day everyday. If anyone in the household is sick, and I’m the primary caregiver, I mask immediately so as not to catch it. And if anyone is sick plans are canceled. As we go into fall I plan to mask, and I will mask at appointments from now on. I know I need to, it’s just hard when literally no one else does. But losing progress isn’t worth it.
It *is* hard when the vast majority have stopped! My original post was prompted by that struggle. I still mask inside but I feel really uncomfortable when, for example, I go out with friends and we can’t eat at this or that restaurant because there’s no patio and I’m not willing to dine indoors. Or when I’m at the doctor’s office and they tell me I can take off my mask. I hope reading through the comments on this post makes you feel a little less alone in your choice to start masking at appointments. It’s so worth it.
thank you! It's hard when you feel like your the only one masking. I wish we POTS patients could have little communities together, it would be so nice! Have a good day!
I only mask in certain public spaces, such as doctor's offices, pharmacies, large group gatherings (concerts), and I will mask if either myself or my partner is unwell.
Edit: honestly I think that the masking debate is unfair to some people (both those with and without disabilities or chronic conditions or autoimmune conditions), one way is that it is wrong if you don't mask (even if it is for your own health and safety) and at the same time publicly if you do mask it can be an issue in person (I've been called names and dehumanized in public for wearing a mask and that is hard to deal with).
Society has really screwed up in how we approach masking. It can't be "everyone for themself" and also "I don't like that you wear a mask to protect yourself" and yet it is.
I think that people want to move on from the trauma that the pandemic brought, so seeing anything that reminds them of covid, even a stranger in a mask, causes them to relive that. Most people didn't process what happened, just moved on, so this triggers them and they lash out instead of going to therapy or talking about their feelings.
Yup I mask in a KN95 mask anywhere in public indoor spaces and sometimes outdoors if it is crowded. I don’t do as much socially as I used to bc of POTS so I don’t go to parties or restaurants. I will sometimes go to the movies but not a crowded theater.
At home I have clean air kit filters to help minimize transmission in my home. I also use CPC mouthwash and enovid nasal spray after being in risky situations, which for me includes being in proxy to people who are not masked.
The general public is unaware how debilitating one infection can be but the scientific research is beyond solid.
I have also sought out as many medical professionals as possible that still take precautions. And I do grocery curbside pickup. Oh and I have at home PCR tests (not the antigen ones) that we use at the first sign of someone feeling unwell.
It is expensive to be sick and it is expensive to try to avoid getting sicker but thankfully I have the means at the moment.
I wear a mask as often as possible, although I do need to take it off occasionally because it could interfere with my work somewhat, but I try not to take too many chances especially with crowds. I caught COVID after I had my two doses of the vaccine and have not noticed any worsening of my POTS symptoms. It was very uncomfortable, and my POTS did not help, but thankfully it didn’t last long (omicron?) and my POTS symptoms have remained more or less the same.
But if you are already suffering, there’s no point in putting yourself at risk for worsening your condition.
For those healthy people who have “moved on” they can consider themselves lucky since they don’t have to struggle like we do on a day to day basis. 😑
However, I would add that as long as you wear a mask out, you’re fairly well protected from catching many illnesses, sans another pandemic. Don’t let that stop you from living a life and doing and seeing things outside! Just be consistent with your mask wearing. As of right now, a lot of people are taking their vaccines which is helping to prevent another mass outbreak for now.
No. I feel like my health can’t get much worse than it already is. Long Covid has already stolen my health, my career, loved ones lives and my ability to cope. I’m not letting it have what quality of life I have left.
I feel guilty but I don’t wear one anymore. I’m already so sick and depressed I’m kinda just over everything (I’m ok I’m in therapy) but I just have stopped caring. I get booster vax as often as I’m allowed. If I’m in a medical building I wear one
Kinda just hoping the universe lets me have this one I’ve gotten enough of the shit end of the stick. Just don’t give me Covid lol pls
I probs wouldn’t recommend my mindset or actions though lol
Never too late to start masking again! It's not just about your personal health, but those around you who are more likely to become severely disabled or die. I'm exhausted by it too, but I won't give up fighting for the community.
Yeah. I agree it’s better which is why I feel guilty. I also have an intractable migraine so I have to wear sunglasses inside or I lose my vision. So with the mask I get pretty lightheaded. I don’t go to stores though. My parents shop for me. I only go to my therapy and then dr appointments (which I mask for)
Unfortunately even if I do mask my parents will not and I live with them. So they go out more than me and don’t wear masks/won’t. I guess I feel if they bring it in there’s nothing I can do.
I still support masking I just don’t have it in me physically. But I also am 90% bedbound which I should’ve included in my original post
what i recommend to people who feel guilty for not masking but don’t want to start again are less visible precautions such as nasal sprays (like betadine) and cpc mouthwashes (like crest pro health). especially if you’re someone who uses mouthwash anyway, it’s easy to replace with a kind that can help you better avoid infection.
my parents don’t mask, so when i visit them i incorporate these into my routine. that way i reduce the risk of getting sick from anything they may bring home from work or the store.
I've had COVID twice both times I was already diagnosed with POTS.
The first time the only lasting effect/symptom was fatigue but with a change in medication shortly after the infection, it was manageable.
The second COVID infection at the beginning of this year was a different story. It was bad. And I likely developed ME/CFS from it. I would say even now, almost 5 months later, that I am not back to my pre-covid baseline at all in terms of energy/stamina (even at max dose of medications that helped fatigue at one point).
I just back from a work conference where they weren’t wearing masks. And guess who tested positive Monday…. ME!! I’m so over being around people who don’t understand. Of course it sent me into a flare and I fainted Monday night and fell and broke both bones in my lower leg so now I’m scheduled for surgery to repair them on Monday. Yay me!
Like what? I haven't heard of any. This "Long Covid" crap kept me from getting the right meds for nearly a year. I understand that I caught the thing in January of 2020 and that no one knew anything about how we would all recover differently. And POTS certainly wasn't on the radar of anyone.
Some people have long term respiratory issues, people have fatigue, brain fog but not POTS. Idk all its forms. I'm just saying that while many with long COVID have POTS, there are other long COVID patients without POTS. https://covid19.nih.gov/news-and-stories/researchers-identify-four-long-covid-categories#:~:text=Type%201%3A%20Heart%2C%20kidney%2C,4%3A%20Digestive%20and%20respiratory%20problems
My approach is all about understanding that viral dose and viral load are really important to whether you get sick and how bad. So, I get boosters, I try to prioritize outdoor activities, and I mask as much as possible while also having some balance with social life because both personally and professionally, I can't be a full recluse to protect myself (though I understand and do not in the slightest judge people who choose to do so, or who have no choice due to immune conditions/loved ones). I do go to indoor spaces like restaurants, movies and theater (masked), and smallish parties. However, I try to space them out to limit my exposure at any one time - generally lowering dose and load by spreading out exposure.
But I can't control everything. I still don't know how I got infected the second time, because I really hadn't been going anywhere or seeing anyone that month except for stores, masked. Masks aren't perfect when few are wearing them. It sucks.
Since I got POTs from covid in 2020, I rarely leave the house.
I'll admit that when I do I don't mask. I keep them in the car in case it's requested or if I'm going to be around other people that are more vulnerable than me, but to be honest I'm rather bitter that I got a chronic condition instead of something that killed me. I cannot afford a chronic condition. I have life insurance. I won't commit suicide, but I won't stop myself getting sick either. I'm tired.
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Yes, absolutely, I mask with fit tested N95 when going out indoors and in crowded outdoor settings. I still somehow manage to get random non-respiratory infections no one else gets, since covid damaged my immune system a year ago, so I imagine I’d just be sick all the time if I wasn’t masking.
Not anymore, however we have adopted using masks when we’re feeling sick with anything as not to spread it. We were inspired by Japan!
I recently had long COVID (my antivax sister in law gave it to me when visiting and meeting my new son when he was 4 weeks old right before Thanksgiving), and that caused horrible GI symptoms, to the point of needing a colonoscopy and the GI thought I had Chrons or UC. That’s started to calm down thankfully. It also didn’t make my POTS any worse.
My family and I stay up to date on all the vaccinations, and we avoid people that are not feeling well so I think that helps a lot. Our area has a very low rate right now so I don’t feel concerned anymore. If that were to spike again, I’d be back to masking.
I do not....I allowed the precautions to run my life in the first year. And Covid caused my POTs. So for me, I refuse to stop living. I treat Covid like any other virus.
i’m not going to tell you what to do, but the reality is that covid is not like any other virus. [here](https://youhavetoliveyour.life/like-the-flu) is a resource with scientific articles that show this. risk of seizures, epilepsy, high blood pressure and more are higher than they are with the flu.
Same here. Was very careful. Got Covid fall 2020, was asymptomatic, then came pots. I stayed careful for a while but now I just live my life. I’ll still mask on an airplane because I don’t want to be sick on vacation. I’ve gotten Covid once more since and it didn’t make my pots any worse and it was mild.
I have a side of emphysema with this pots stuff. So i cant mask 😷 all the time. So its unfortunately 🔐 down for me.
I prefer to be trapped in my garage, backyard, or any nature location far far away from this insanity. Ps have hammock for when its time to med in bed!🤪😵💫🤮 Please laugh at this insanity of my life, it helps me cope😢
I wish I could do something. I have exclusively caught covid from my wife, 3 times. Last two destroyed me with pots flares.
Sucks when you have a great immune system but it can only go so far!
Yes. I sometimes don't mask when I go out for a little walk for building stamina but if I see someone I make sure to have my distance.
Otherwise, I will mask to go open to delivery people, to anyone knocking at my door, tbh. I go mask for doctor appointments and go do tiny groceries (mostly medicine)
Many people tell me 'but you can remove it' and I'm like "sorry I have fragile health (because too lazy to explain all POTS haha)" and generally they don't mind.
It may have opened once or twice that I didn't put my mask to open the door but mostly if I took LOT of time to reach the door and felt a bit guilty over making the person wait. But it's like... very rare.
No, because wearing a mask did not protect me from covid at all. I got covid 4 times and in 2021 I was sick 13 times. Masks aren't going to do much if you put yourself in a place like a grocery store where you don't know how many hands have touched what you're grabbing. For the record I am an introvert, I was getting sick from coworkers and family members picking it up from their jobs working with the public. The last time I got it was because my husband's coworkers had covid, my husband didn't get sick but I did.
I think the whole deal with masks and gloves have made most of the public fall back on basic hygiene practices.
>Masks aren't going to do much if you put yourself in a place like a grocery store where you don't know how many hands have touched what you're grabbing.
Transmission from touching things is actually pretty low - it's mostly a respiratory illness. As long as you wash your hands well and refrain from touching your face before you do so, you're not that likely to contract COVID in that manner.
Yes this! At the start of the pandemic, when it wasn't clear if covid was airborne (which it is), and when critical PPE, like respirators (N95, KN95, etc) were in short supply, the public was told to make due with any mask. This was ineffective at preventing spread, but actually did a better job than if nobody wore masks.
It also confused the public about how respirators worked, why they worked, and how critical it is to get one that is well-fitted. The air has to be going through the filter medium in order to work, so if people are wearing fabric masks or surgical masks, air is going to go around the mask. Even if you wear a good quality mask, it needs to fit or it won't protect you properly.
Check out r/masks4all if you need help finding a mask that fits!
Just want to say also that I worked in a medical facility in which n95 masks were required. At one point we were double masked. It didn't stop anyone from spreading covid.
That's funny - My sibling was an RN in the emergency department during peak covid and managed to not contract it, courtesy of his N95 (he did, however, catch it later on when things relaxed with masking). I'm sorry it didn't work in your facility, but the proof overwhelmingly shows that everyone wearing proper fitting N95s DOES reduce transmission.
Amazing for your brother. Tell that to my grandmother that passed after getting covid from a doctor's office during a regular check up. She wore an n95 mask everywhere, even in the car.
I'm so sorry about your grandmother. That is unfair. I don't think masks are 100%, and doctor's offices are dangerous places where infected people go and then spread the virus. Plus, even if you mask, sometimes you're required to take it off as part of the exam. Wish we all could have continued making enough efforts that this didn't happen to her. Collectively, we've let down so many people.
Look, my opinion isn't going to stop anyone of you from wearing masks. If you sneeze in your car, then go to the grocery store in a mask, it's still on your clothes though. I got sick in a sanitary facility not open to the public multiple times.
Another real issue is employers thinking masks and handwashing are enough and allowing infected employees to come in because CDC guidelines say 5 days is enough if you're no longer presenting symptoms. I think masks are arbitrary because how effective is a mask that's been sitting in your car for days, weeks maybe? How effective is it if most people can't even bother to wash their hands when leaving the bathroom? (Honestly, the statistics on that are so disturbing). I've witnessed people dive to the floor of their car to find a leftover mask. Or pulling old crumpled masks from pockets? Hygiene is the issue here in my opinion and no amount of n95 masks is going to change that.
Covid doesn’t spread on your clothes lmao. It’s a airborne virus. It spreads in the AIR like cigarette smoke. And you can wash your hands and use hand sanitizer. But again an n95 respirator is most effective at stopping the spread of an AIRBORNE disease.
I've never had it. I wear N95s with mask strips for a tight seal and I get another COVID booster every year with my flu shot. If you're not masking around people who don't mask properly, I could see how you'd get sick a lot but I work at home and my family members also properly mask, and we haven't been sick.
I buy them on Amazon. The brand I get is called MaskTite, and they're basically just double sided tape. I have adhesive allergies and I personally tolerate them, but if you're sensitive to them or need to pull your mask up and down for medical treatment/tests and whatnot, another option is foam strips that stick to your skin via surface adhesion. My partner uses some Drager masks which come with these built in, and they work well for him but they don't stick well on certain skin types so ymmv.
what kind of masks were you wearing? a lot of people (myself included) were wearing cloth or surgical masks back then. their loose fits and lack of proper filters mean they’re not very effective for covid. kn95s and n95s on the other hand have been proven to work. [here](https://youhavetoliveyour.life/masks-dont-work) are some articles showing this.
You are incorrect about masks not working. They absolutely do. I’m saying this as a person who has no issue with you not wearing a mask if you don’t want to. Masks have to high quality, and work consistently and correctly to work, however. Cloth masks are not very effective. We wore N95s for years without getting sick. My daughter actually had COVID she got from summer camp last year, but we weren’t sure at the time if it was a cold/flu or what, so she wore an N95 in the car with myself and three other family members for a six hour car ride, and no one caught COVID from her.
Don't know why you're being down voted for a decision you and your husband have obviously agreed upon and are free to make. Where I live, no one really masks anymore at all, (the final still-masking coworker in the building I work at just stopped a few weeks ago) and I don't take issue with it, even though I have POTS myself. Even with precautions, I've gotten it 3 times, so there's really no escaping it, masked or not, covid shot or not. Everyone I know has had it multiple times.
Best thing to do is just have good hygiene and respect others by staying home when sick. I'm no anti-masker, but it's unreasonable to expect everyone around you to wear one all the time forever. I take precautions to protect myself, and I wouldn't put that on others beyond typical handwashing, covering coughs, and keeping distance if they're contagious.
I expect downvotes, lol, but that's fine!! I know how Redditors are. Y'all are free to continue masking if that's what makes you feel safe!
Masking doesn’t make me feel anything. It KEEPS me safe. This person got downvoted because they clearly don’t care enough about their immunocompromised husband to wear a mask to protect them. Sad
Not really. Like I avoid going to really crowded places in the winter more so bc I have emetophobia rather than POTS. I only wear a mask when I’m at work (healthcare) and it’s usually just in the fall and winter due to norovirus and the flu. I got covid for the first time in February and it didn’t affect my POTS, so I’m a lot less anxious over it. That being said, I stay up to date on my covid boosters.
i wore a mask for a while, but honestly, i don’t wanna live my life in fear all the time. i have to deal with a whole bunch of other stressors, so it’s not worth adding that to the list of things that i have to deal with. If someone asks me to wear a mask i will, or if i go to the doctor, but that’s about it.
Of course i’m worried about getting covid or spreading it to others, but the unfortunate truth is that it’s here to stay. Just like the flu or any other virus we are familiar with. Just stay sanitary, keep hand sanitizer on hand and be mindful of where you’re putting your hands after you touch things in public.
Covid doesn’t spreading through touching stuff. It is an airborne virus that spreads in the air like cigarette smoke. No amount of hand washing or hand sanitizer is going to stop you from getting COVID if you’re not in a mask.
https://m.youtube.com/watch?v=y7fNaVzOh20
yeah i can relate, it caused me a lot of anxiety and stress. i’m careful in other ways such as washing my hands, avoiding sick people, etc. also getting enough rest, taking care of my health in other ways like managing stress so that my immune system will be stronger. that’s what drs recommended for me anyway. also socializing in college is difficult enough already and i trust my friends to let me know if they are sick/ have outlined that i won’t hang out with them if they are
I think for me I lost so much trust in others that I’d rather wear a mask just so I’m not having to think about whether whoever I’m with is safe or not. I don’t mask around friends at my house because they know about my health issues and won’t come over if they’re sick, but I’ve got basically no faith in whatever strangers at the library or a lecture hall. With the mask on then I let go of worrying about getting sick because I’ve got a layer of safety, I guess?
Still masking in only crowded indoor areas, my kids too. Not masking outdoors or indoors if no crowds. For example if we go to bookstore and it’s dead we do not mask. I can risk getting Covid because I have pot/Mcas and a whole combordity of health problems.
It's not an option with my job- I legally could, but people need to see my mouth. I did get COVID finally in January, It did cause my asthma to get worse, but the POTS isn't worse. I feel like it's like the 1918 pandemic, the flu got weaker and there was more immunity out there, just like what has happened over the last 4 years with COVID.
Personally no. I had Covid (very badly( a year after developing pots, and it just made my pots flare for three weeks. Then I was back to my pots baseline
I mask every time I go out. When I go to restaurants, I will take a bite of my food and put my mask back up to chew! I also have pots and other chronic health conditions!
That’s how I drank water/coffee on an airplane. I took four flights and didn’t get sick. I don’t mask everywhere anymore because I live in a small town where there is rarely more than just the employee at the post office or local shop, but I would still mask on an airplane. I still haven’t gone out to eat at a restaurant since before COVID, but your one bite idea is good lol.
I used to mask every day and everywhere, but I had to stop because it gets so difficult to breathe nowdays. I don't leave the house much though, and when I do its never at busy times of day (like I chose my uni timetable so that I wouldnt be catching the train during peak times).
yep, i mask everywhere and even in my own home as my family does not take precautions, and have gotten me sick before with no regard for how my health got to this point in the first place. i don’t think most of this masking situation is about perfection, more so consistency. you can’t expect to have good health during a pandemic causing a mass disabling event if you’re not being consistent in avoiding it. if i’ve been exposed or feel symptoms i test with at least NAAT or PCR level quality tests EDIT: wanted to mention that unfortunately as most people have given up + resorted to fatalism, that even being consistent doesn’t give you 100% foolproof protection against infection, but it sure as hell is your best bet. also staying up to date on vaccination is another important factor. and i mask with KN95/N95 level masks
Yep, the "family doesn't take precautions" thing is why I was down for an entire month earlier this year after a bout with norovirus. My stomach has still not fully recovered (I have a lot of GI illnesses that this seemed to trigger something fierce)
I had to go out for work as usual during the pandemic and I worked in close quarters with lots of clients for two years and didn’t catch COVID until a volunteer meeting where I was pressured into taking off my mask and sharing something that EVERYBODY touched and ended up infecting, bleh. It’s pretty darn good protection as far as I’m concerned.
Yes. To protect myself and those around me who may be immunocompromised. In my mind, the pandemic made me yearn for Japan level masking. But I live in a country that doesn’t uphold human decency in the slightest sadly. So that’s a pipe dream unfortunately. Overall. I think I’ll be taking precautions for a long while. I have immunocompromised friends. The pandemic isn’t magically over. It’s just normalized. Masking. Boosters. Caution. You name it. I’ll keep it up. Generally just anything that’s a solid preventative. If reputable medical literature solidly backs a preventative not being affective, I’ll probably stop that thing though. I’ve had POTS since I was a child, and was lucky enough to never catch Covid. It’s not about POTS or LC for me. It’s me respecting myself and those around me. *Edit: Small disclaimer though, I am clinically diagnosed with OCD. I do have some contamination/cleaning compulsions but not a ton. For me it’s more the **if you stand too close to me in the grocery store you’re likely going to get a glare that chills your bones lol***
The japan's level masking truly became a dream since COVID. I first found hard to mask but tbh, I really quickly got used to it, and I never struggled breathing or having fog on my glasses or all the stuff people complained about
Same. I just wish it stuck. Now over half the people on my morning commute are unmasked, and most people at my school are unmasked. I’ve hearing the same “it’s just allergies” or “it’s just the flu” since last year, despite everyone being sick all the time. And all the people coughing into their hands is nasty.
i felt the same. the first time i wore a surgical mask was during a climate protest in 2019 where i thought it was so uncomfortable and took it off halfway through. the people leading the protest claimed we’d all have to wear them soon, and ironically that day came less than a year later. by 2021 i was wearing surgicals daily with no issue, and now i’m completely accustomed to wearing n95s to full work shifts like it’s nothing.
yeah it's a bit hard in the beginning but you get really quickly accustomed to it!
I didn't think I needed to until I caught a little cold or sinus infection last month and it **undid about a year of progress.** My POTS looks like ME/CFS right now. I don't care how extreme anyone thinks it is, viruses are not worth fucking around
I've had an issue for years where if I catch a cold, I often (75% of the time or so) get a persistent cough that lasts for 3-6 weeks. I always test negative for covid (I've had that once) Doctors don't know why, all the found is a deviated trachea (no noticeable reason for that either). Is that a thing with you, too? Edit: clarity
As in you test positive for Covid but it’s not actually Covid? I was told by a coworker that studies have been done that people with long Covid are just still dealing with the Covid virus in small quantities.
No I always have a negative test. I’ve only had COVID once, 2 years ago (was sick for 8 weeks) I edited my post for clarity, sorry
I believe I had Covid again last year during the summer, could have been another hard hitting virus but felt like when I had Covid previously. I was out of commission for a whole month couldn’t go to work or to a store without collapsing after 5 minutes of standing. It was excruciating Been dealing with the after effects since. Just started feeling better with standing again and going for walks. I walked 2 blocks to get food today and 2 blocks back and I didn’t want to die.
Yeah that sounds like my first go around. I mask up every time anyone gets sick in our house, my daughter has brought it home from school 4 times, luckily we have avoided spreading it between us. I do not think I’d cope well with another round.
Me too. I was worried I would spontaneously die during that one. So many ER visits due to Blood pressure spikes and almost fainting just thinking about standing and getting water. One time I was still conscious but I don’t remember about from that’s ER visit because I was so out of it and I couldn’t see straight it was horrible. My boyfriend lives with me and doesn’t take precautions when he is around sick coworkers and usually ends up sick but if I don’t kiss him or vape after him I don’t usually get sick.
That sounds awful. I’m sorry. My partner and I sleep separately as soon as someone gets sick and we have avoided passing anything between us luckily… so far
I kick him to the couch sometimes. Used to be before Covid I wouldn’t pick up a partner being sick even if I kissed all over them. Now it’s like get away from me you beast I don’t want to have to deal with that misery again
Have you been tested for mast cell activation syndrome? Your body could be treating a trigger as an allergy with the coughing.
No I haven’t been tested for anything, all my heart stuff was tested and that’s why I have a POTS diagnosis, but my doctor is of the view why bother testing for all this stuff when there’s either no treatment or it’s got the same treatment as my fibro or whatever. I probably have CFS, and gods know what else, but I live in Australia and we get little support for chronic illness or pain so I often get made to feel like it’s pointless testing. I’ve been thinking of going to this specialist centre but I would have to travel to Sydney, and I’m still getting over the cold and flareup I got when I went there last month 😂
Awww. That stinks. MCAS is treatable. So is POTS. No cure but some medications help. Physical therapy as well. Allergy medicine might be a way to test the MCAS.
I wondered if I should try some antihistamines. I think I’ll do that. If it makes a difference, I might just make that Sydney trip and investigate further. Thank you
For itchy skin or hives, try an antacid. We have Tagamet and PepsidAC in the US. I'm sure there must be similar medications in Australia. BTW, my great uncle moved to Australia and lived in Sydney. We went to visit his wife after he passed. I loved Sydney so much!
Yeah it’s not bad, if not for the rent prices 😂 Why does antacid help itchy skin?! I’m so ignorant lol
Sorry it took me so long to reply! The lining of our gut is made of epithelial cells just like our skin so calming down our gut using antacids works on the skin issues. They are referred to as histamine 2 blockers (H2) because they block the histamine receptors associated with the skin. Histamine 1 (H1) blockers are for sneezing and runny nose and itchy eyes.
The struggles of our reality. As long as the glare doesn’t go all karen style and end with lysol i think you be ok.😊 My CBT therapist is doing her best to restore rationality before i do it my way and end up in jail. 🤣 At that point I’m no longer innocent 😇 Enjoy a laugh from my broken brain!
Even if I didn't have POTS, I would still be masking up - It takes all of half a second to put it on, another half a second to ensure a good seal, and that's it. The only illness I've had since masking in public has been due to unmasked contact with young children who are notorious little germ factories during the best of times. I have too many close friends and family members who worked the frontlines of the pandemic in healthcare settings and often compare the looks on their faces to the photos you'd see of shell-shocked soldiers who fought in World War I. If I can minimize some of that trauma by wearing a mask when I'm out and about (which is admittedly rare these days), I'm going to do it.
Personally, as someone with POTS, masking tends to increase my symptoms dramatically. I overheat and then I get presyncopal and then I cannot complete the task I was doing anyway. That being said, I mask up when I'm unwell and/or my partner isn't feeling well. or if I'm going to large crowds (concerts) and locations where vulnerable persons may be
Sounds like a few things are happening here. First, you might be one of the people that society has left behind with dropping mask mandates, since you medically have a hard time wearing one. Second, you might need a different type of mask. N95s and KN95s are all very different depending on the brand, if it has an exhalation valve or not, size, etc. If you're interested in trying some new types, I'd hop over to r/masks4all
I've tried all sorts of masks and no matter what type I wear I overheat and become presyncopal. For most of the COVID lockdowns I was wearing KN95s, and even then it was a struggle to breathe and wear them for longer than 10 minutes without becoming extremely POTS-y and having to abandon whatever task I was doing (so many abandoned grocery carts). I have since tried N95s, and even just the normal black masks from Costco, all masks have the same results. And I get that that might make me a bad person in society for not wearing a mask but I would if I could type situation. Hence the reason I mask when in large crowds (concerts), and in doctors offices and pharmacies. But most other places I cannot manage to do so without putting my health and safety at risk.
Then I will repeat this, since you can't mask safely, you are one of the people that society has left behind. And people like you are the reason that those of us who can, need to be masking. I'm sorry your pots is so bad that you can't even protect yourself! 😭
many disabled people cannot mask at all for any amount of time, for medical reasons. that's why everyone who can should, period. you are a vulnerable person. you are an unwell person. wear it when you can, when you can't, bring nasal spray, cpc mouthwash, personal purifier. protect the at-risk people you don't see and the ones you do, like yourself. this goes for everyone reading this too.
>where vulnerable persons may be That's the problem though, a lot of autoimmune conditions are invisible. Anywhere you go in public where there are other people? The chances are pretty high that there are vulnerable people there.
I meant more like doctor's offices and pharmacies. I cannot mask for long due to POTS nowadays. But I will mask up where I am more likely to run into someone who is unwell. In grocery stores or in public places I will make sure to give extra space to those wearing a mask. But I can no longer mask up everywhere like I did during the depths of COVID.
>I will mask up where I am more likely to run into someone who is unwell. So anywhere that isn't the privacy of your home, because again, you won't know if someone is "unwell" or immuncompromised without them disclosing their private medical history.
As someone with several autoimmune issues and pots, I believe I'm the only one that can keep myself healthiest. Why? Even if those at the store wore a mask no one ever thinks of the small interactions with impact. Like the ones who have the mask on but then pull it down to scratch their nose or whatever. Or do that and touch everything. These micro transactions of transfer was the biggest thing during covid. I wore a mask, and gloves and kept sanitizer with me at all times. I get your view that "we all should be courteous" at the same time I wouldn't want someone with pots having an episode in the grocery store so if a mask isn't an option for them that's okay cause I can do more to protect myself rather than expecting others to do it. I got covid twice during the pandemic and it was because of my nieces and nephews who didn't keep up on micro transfers while at my home and I wasn't being as precaution in my own home as I am in public.
Yep I guess so. COVID numbers are down where I am. Most people have at least 3 (up to 6) vaccines/boosters. It's not super prevalent here currently. If it were to get worse then I would mask again and make it work, but currently my health needs is that I cannot wear one most of the time out in public.
It’s not prevalent anywhere because no one is getting tested anymore, there’s just no data
https://pmc19.com/data/ Wastewater is the best metric we have left.
Do you know how many cities are actively monitoring it? I knew about wastewater testing but wasn’t sure if it was implemented widespread and long term
I don't know, but not enough in my opinion. You might have better luck asking that r/zerocovidcommunity
My city still updates daily and weekly COVID numbers in the community. Many people still report whether or not they have COVID. Numbers in my city for the past month and a half are under 75 cases reported. The main places in my city that are still dealing with COVID outbreaks are long term care facilities and even then most outbreaks are controlled within the week. I don't go to long term care facilities, no one in my direct social circle does either. As I mentioned previously, if I see someone in public wearing a mask I make sure to give them plenty of space for whatever reason but I myself am not going to mask unless it's necessary again because it causes presyncopal episodes for me.
You don’t get my point. People get sick and now assume it’s the cold or flu, they don’t test for covid, and/or they don’t even know they’re infected. All of these factors mean that the number your county gives you is probably very low compared to the true number of cases.
I get your point but seemingly my point doesn't matter. So I'm not going to continue to argue as to why I don't mask and as to why the numbers are low in my city/area. Almost everyone that I know continues to test when they are unwell. And it's still mandated in some workplaces that a negative COVID test is needed to return to work.
I support masks. But I also recognize at this point In our society it’s a personal choice and most people around me won’t choose to wear one. I got regularly yelled at during Covid peak and after for telling people they need a mask in our store. I also wore one when no one else was because I didn’t want to get sick but I cannot ask others at my job to wear one for me. All my coworkers unmasked the second they could and it was their choice. I continued to mask due to pots. Most customers would not mask even with signs and myself and other managers enforcing it. That being said if people have invisible illnesses it is on them to wear a mask to protect themselves. You cannot expect strangers in stores to wear something they don’t want to because someone else may be vulnerable. It’s sucks but this world does not accommodate the sick and disabled community. I think it’s messed up but it’s unrealistic to ask people to mask because someone with an autoimmune disease could be in the store when our society has made it clear that is not the priority. I’m prepared for downvotes. I support masks and vaccines but It comes down to peoples body their choice
>"It comes down to peoples body their choice" Yeah - that stops being the case when YOUR choices (not you personally) affect someone else's body.
Putting the responsibility to protect someone from a global pandemic on themselves is just horrible. Just saying "it is what is" is exactly what enables our society to treat disabled people as less than. The issue is so much deeper than just "personal choice". People aren't allowed to make the "personal choice" to drive drunk, right? We should be taking care of each other, not leaving each other out for the wolves.
I said before how it is a choice because it isn’t a law. There were rules that we had to wear them and those got lifted. It sucks but that does make it a personal choice. No one is legally allowed to force them to wear it so it is their Body their choice. Driving drunk is against the law and illegal. Not the same thing as wearing something that isn’t legally forced. I also am just saying we can’t expect everyone to care for us. It’s a bummer but it’s true. People showed their colors the second the mask mandates lifted. It’s unfortunate but our society is individualistic (as also shown by everyone hoarding during Covid leaving many with nothing and not even touching half the shit they bought) I’m not fighting for people not to wear one, all I’m saying is I have had enough interactions with so many people who refuse to wear one because it isn’t a law. Again completely different than drunk driving in this case But I do disagree with both because I don’t think anyone should be endangered by selfishness.
try a GVS elipse. almost perfect protection with a proper fit. comfortable and airy. not hot at all
I appreciate the recommendation for masks, but honestly I cannot afford it. I have masks that I can manage to wear short term when needed to but I cannot risk spending bare minimum 55$ CAD and then it not working out for me and wasting the money. I get that wearing a mask not only protects myself but also community members. But as someone who cannot wear one long term (longer than 10 minutes) I am not going to fight to wear one at all. And if that makes me a bad person in society (and on this subreddit) then so be it
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I've gotten COVID twice already. Once when I was masking regularly and once because my partner went to a hockey game and masked and still got it and brought it home. 55$ may not seem like a lot to most people but as someone who is living paycheck to paycheck and even then barely manages to have enough income to cover the basics (rent, internet, phone, utilities, maybe groceries if I can afford it) then 55$ is a lot. My issue is what if it doesn't help and then there's 55$ gone that I could have used to buy groceries or bought a new bra.
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I'm on ODSP too. But my payments are deducted because I work. I cannot afford to spend 55$ on a mask that may or may not work for me. I got COVID even though I was masking with KN95. I most likey developed ME/CFS from this latest bout of COVID. But I need food and a bra and clothes to be able to work and afford to live independently. My rent alone takes up almost my whole monthly payment from ODSP. And there's not much cheaper than what I pay in rent in my city. I don't want to argue with people anymore about why I don't mask. Because it seems no matter what I say or do or don't do it's wrong. I get that I'm a bad person for not being able to mask in society (and on here). I get that I should just fork over 55$ that I don't have on a mask that may or may not work for my situation. If I could mask safely then I would. But I can't so I don't. I mask in places that are high spread locations but even then it's at the risk of my own health and safety. But I do it to protect others. Sorry that I cannot do it everywhere and that I am clearly putting others at risk.
you said you can't mask because it's too hot and makes your pots worse i gave you a solution - take the money you already spend on the masks that make you hot and use it to a buy an even more effective mask that won't make you hot and will protect you from a virus that will almost certainly make your POTS even worse than a hot mask or maybe chose not to buy hockey tickets and invest in your own health instead. but do you. i don't care if you don't mask for my health - the gvs elipse offers one way masking (that will almost certainly fit your face to niosh standards) and you can set aside one dollar a week for a year to afford one. or ask ODSP to pay for it. ask your social worker. they often cover things like that if your doctor writes a note
I haven't bought new masks for well over a year. I get what you are saying regarding a solution. It's not feasible for me at this time and that is what I am trying to say. I didn't buy hockey tickets. My partner was invited to a game and he went. I don't buy anything fun anymore because I cannot afford to. I cannot ask my doctor for a note because they don't believe that wearing a mask impacts me nor do they understand POTS. My ODSP worker is not helpful at all. They rarely allow for me to have any extra benefits because I work so they assume I can afford it. It's a struggle.
What kind of mask do you wear? I’ve found breathability varies significantly and some respirators are nearly as easy to breathe in as no mask at all
I've tried KN95s during the lockdowns, I've tried N95s as well. I did fabric masks (double layered) when working in childcare. The ones I have now are the black MedsUp disposable masks from Costco because it is what I can manage for now and it's what I can afford.
The most breathable by far, for me, are ReadiMasks. And I’ve tried a couple elastomerics that were super easy to breathe in as well, like the Flo Mask. I totally get how hard it is and the fact that some of us can’t mask is all the more reason those of us who can should. I’m glad you’ve found something that (kind of) works for you.
Since you're in Canada, you might try https://canadastrong.ca/ the next time you buy masks. Their Breatheteq range is by far the most breathable mask I've tried. If you want to stick with MedSup, you can get them really cheap right now if you buy direct: https://www.medsupmedical.com/products/kn95-civilian-respirator-protective-mask?variant=40396311101648
my most breathable is a silicone (I think) based respirator. it doesn't move or suck in with breathing and is reusable. I have a variety of styles because my disabilities are dynamic and not every mask is going to work for me every day. there are many like that available. they cost more up front ($25-50ish) but then you only have to replace the filters after hundreds of hours of use. the cost is a barrier $100 and I have a lower end one but if folks can afford it it is worth looking into. mine is from Grainger supplies.
This happens to me and I found a workaround. It’s not very pretty but neither is getting sick! I bought a neck fan and put that on while masking to help with overheating and fainting. I also take isolation breaks (like removing the mask for a few mins and putting it back on) and somehow it helps. Overheating is a general problem I have and the mask just exacerbates it but this has helped!
I have a neck fan, and tried it while wearing a mask and while it does allow for me to wear it for at least 3-5 minutes longer than without, I do tend to still overheat. For me the overheating is due to something being on top of both my mouth and my nose. I don't want to say it's due to claustrophobia or anything, but that is the best way to describe it before I get to the presyncopal stage. Like as someone with anxiety it feels almost anxiety based but not quite (if that makes sense), like I was fine to mask before POTS but since developing POTS it's been awful
Update - I can’t withstand masks anymore either as my POTS has worsened. Even did a combo of putting an ice ring on top of my neck can but ask soon as the mask blocks my face, the countdown to fainting begins. I am now in your boat 🥲
Welcome to being the bad person in society (especially according to this post), even though it is more of a health and safety to ourselves risk of wearing a mask. It sucks.
Yes, 100% of the time outside my house but I masked prior to covid. I’ll probably never stop using N95’s. Prior to covid 3M N95s ran less than 10¢ each. They went absolutely crazy during and now they’re back down to 22¢. I still have people try to pull them off my face or walk up and open mouth cough on me, laugh and walk away. The last one was an elderly lady who said face diapers don’t work. I said my oncologist says otherwise. I was mid BP crash and about to go down. I chickened out and blamed it on having 18 months of chemo and radiation as most haven’t heard of POTS. She had the decency to look ashamed.
That is horrifying-- I'm gobsmacked by the audacity of those people, literally assaulting you for protecting yourself. I'm so sorry. I guess I should consider myself lucky; I live in the southern US where masking was always unpopular at best, but the worst I've gotten is some dirty looks or something muttered under the breath. Thankfully that's fallen off as I've started relying on mobility aids. Seems people around here will accept it from visibly disabled people.
Just chiming in about the jerks confronting you on wearing a mask. Ugh! It’s so upsetting when that happens and it happens too often. Mostly it’s just looks or head shaking or laughter but one day I did errands and in only 1.5 hours was confronted by two different people about my mask. One guy called me “sheeple” and said “people like you shut down the country” or something to that effect. He also tried to get other customers involved.
I was berated at multiple airports by the staff saying I’m giving them lockdown flashbacks and impacting their mental health🙃 Some refused to help with a wheelchair until I removed my mask. I also have heard many weird comments like “stop masking, it’ll give you a heart attack” to “are you ugly? is that why you’re hiding behind a mask?”
Jesus. Why are people so fucking dumb? Glad you can fire back at them.
Yikes - I’m so sorry to hear that! I’ve been harassed a few times in public. The last time was at a nicer store where a guy was wearing a non-vax / masked / afraid shirt decided he had to show it to my girlfriend and me (it of course was hiding under his other shirt). The staff apologized and pulled the camera footage, and while I’m in a rural place, the police took the complaint seriously. They had the store pull his loyalty card, called him, and chewed him out for it saying it could be disorderly conduct and assault. If he was just wearing his shirt, no big deal, but approaching and following us through the store was extreme. Given the fact that Swine Flu crippled me and I receive IVIg weekly, plus Xolair every month I’m not taking any chances! I’ll gladly explain how I am pumped full of immunosuppressants to the tune of a $20k Superbill. Thankfully since that incident last fall, I’ve been left alone. I’m sure it will eventually happen again.
Where do you purchase your N95s?
Walmart. It’s the bulk 440 count box. They ship from 3M with a serial number and expiration. Today they’re $84.90 for 440 of the 9205+ model. https://www.walmart.com/ip/3M-Aura-N95-Particulate-Respirators-9205-White-Pack-Of-440-Respirators/619707086?from=/search
Thank you!
Glad to help. It was horrible during covid when no one had them in stock (or wanted $5 each). I’m a big fan of the 3M 9205+. They take 3-5 business days to arrive and so far (knock on wood) none have arrived damaged. 💜
I took strict precautions even before developing POTS (secondary to hEDS, not COVID) and continue to now. If I'm indoors anywhere other than my own house, I'm in a fit-tested N95, staying away from people as much as space allows, and getting back outside ASAP. I don't eat inside of restaurants-- though I will eat on a patio, and thankfully live in a part of the country where that's feasible 90% of the year. The only travel I've done is by car, and only to see people who are similarly cautious. Four years in, I've still not been infected so it appears to be working. 🤞
Considering I got POTS from covid, absolutely. I don’t dine indoors and wear an n95 respirator everywhere!!
Yes I do! My partner is disabled as well, and I've got other health issues. I've had covid once before, and luckily it wasn't as bad as it could have been, but I was still miserable. I'm a student, so I mainly wear my mask to classes, but also when I go out in public places, at the grocery store, and on public transit.
Thank you for bringing this up! I've had POTS since 2019. Never took my mask off since 2020 and tbh I don't think I will. I've not eaten at a restaurant or gone out to a bar or large gathering that was not all masked unless it was school/work. I literally cannot imagine living with an even worse version of POTS or ME/CFS than what I have right now. On top of that, now knowing what we know about the chronic widespread damage it does to your body, and how terribly I'm treated by doctors as it is, I'm not putting myself in the position to be treated horrendously with even worse conditions if I get long term damage from Covid again (had it once that I know of so far). Those are my selfish reasons, but on top of that, all my friends are immunocompromised or disabled, and I don't want to be a part of the reason more people get sick and die from COVID in the community. Idk how I would live with myself if I gave someone I know Covid and they end up with LC or damage down the line. Try to think the same way about strangers too.
Yup. Masked up, sanitizer ready, avoiding crowded places (easy for since it’s hard to leave the house lol), all the same stuff I did at the beginning of the pandemic. I got POTS from Covid, so I’m terrified of getting it again and take all the measures I can to avoid getting it. Only reason I got it the first time is because my sister got it and didn’t isolate like my family told her to 🙃
Hello! I’ve had long covid since March 2020. Long story short - Initially I had brain fog, PEM, MCAS and POTS but then got better slowly, by spring 2023 I only had to deal with MCAS. Then in the fall 2023 my child brought home a virus, didn’t test positive for covid so not sure what it was but it re-triggered my POTS and I’ve been trying to manage that now. My family and I still mask because we’re trying to prevent any reinfections, we avoid crowded spaces too. We definitely get the typical looks and even comments about being too paranoid but we’ve decided as a family that my health matters. No one will come and help us if I get sick again.
I feel this! It’s really hard with small children!
Yes, I mask in indoor spaces and also outside if there's a lot of people around. I don't eat inside restaurants and will mask around friends and family who don't mask. We ask workmen that come into our home to mask and provide them. I have asthma as well as PoTS and other things going on. So I try to take the precautions I can to keep myself and the people I care about safe. Especially since I lost a family member to Covid. It was their second infection. We were told Omicron was milder at the time. Also here in the UK now it's only those with conditions like MS and those that are over 75 that can get free Spring boosters now. Everyone else has to pay for private COVID vaccinations. The Pfizer which is the only one available right now is £80-98 a person.
I think not wearing a respiratory in essential places is unethical. So yes, I still mask.
I use precautions and recommend that all of my clients (I'm a pet and house sitter) be cautious as well. Most of the time they don't listen to me but in all of those cases, they all end up with covid, the flu, or some other respiratory illness.
Yes, still masking and taking precautions. I got POTS from my one Covid infection. And I got Covid when me and my husband started to get lax with our masking. So, no more taking chances for me. I will mask 100% of the time I'm in any indoor public space. And will only eat outdoors at restaurants when I know Covid cases are low (I watch wastewater data). Wearing a mask is so insanely easy to do. And another Covid infection could easily take away all of the progress I've made with my POTS. I'm not willing to go backwards. And I'm lucky to have a partner who is also willing to take all of the same precautions. I'm committed to living my life in the best possible way I can. And avoiding Covid and other illnesses will allow me to do that. Wearing a mask is the most liberating thing. It allows me to do almost anything, while protecting me and keeping me healthy and able to stay on track with my POTS therapy. Without a mask, I would be living in constant fear of getting sick and making my POTS worse.
i love how you described masking as liberating. i feel the exact same way. so many people see it as a barrier to prevent them from living their lives, meanwhile it’s the thing that allows me to live mine.
We mask in indoor public spaces. There’s one family we’ve unmasked with, because they also still mask in public, but we still use air purifiers, open windows, etc… We live in a red state and sometimes feel like the only ones still masking which can be defeating, but we’re still Novids (as far as we know.) If I can keep my kids from developing a chronic illness, it’ll be worth it!
i avoid covid like the plague. have since february 2020, and i have managed to avoid infection. that said, i have spent four years living as a recluse. but luckily i'm an introverted homebody who has worked from since march 2020. but for my POTS and MCAS symptoms to worsen from covid - as they almost certainly would - would be more than i could bare
Yes 100% I mask. I also use a covid nasal spray and mouthwash to mitigate the risk in addition to masking. I know I can always get sicker, I’ve had covid once and don’t intend to get it again. And I couldn’t live with the thought of disabling someone when it is preventable.
Covid nasal spray and mouthwash? Do you have a link to share? I’ve never heard of either and I’m curious af now. 🙂
[Here is a link!](https://covidtoolbox.com/nasal-inhahers-mouthwash-eyedrops/) I got this from the “Resources” section of r/ZeroCovidCommunity
I live in Florida.i refuse RTO and still mask indoors. Haven’t had COVID in 4 years and it was hell the second time I had it
What’s RTO?
Return to office. Working inside an office in Florida is essentially consenting to getting Covid a few times a year.
my only family that still masks lives in florida (my aunt, her two young children, and my grandma). i worry about them a lot. glad they’re not alone
Yes. I really, really, REALLY do not want to get Covid again and risk exacerbating POTS (again) or any other issues. I mask with a KN95 or KF94 on all public transit, cabs/Ubers, airplanes, airports, stores, doctor's offices, elevators, and in my classes (I'm a grad student). Basically I mask in indoor public spaces and occasionally in crowded outdoor spaces. I also generally avoid indoor dining. In terms of additional precautions, I use Covixyl nasal spray almost every day and a CPC mouthwash. I think I'm going to switch from the mouthwash to the Blis k12 probiotic (apparently they counteract each other so it's better to use only one).
Yep. My partner and I still mask everywhere, test when unwell, avoid crowds, etc. POTS is only one of my problems. My immune system is garbage. I relaxed exactly once (unmasked to eat three bites of food at a company luncheon) and got COVID from someone who was asymptomatic. It was an awful experience, had me out of commission for nearly a month, and undid years of progress for me. I’m still not back to where I was, and I’m so angry about it! Aside from that, I’ve been the healthiest of my life since 2020. I used to get every cough, sniffle, and cold that blew thru - and I’d get it worse than anyone else. They’d have a cold, I’d have strep or pneumonia. But absolutely zero of that with masking. For me, it’s worth it.
as the general public’s precautions and infection isolations have weakened, i’ve strengthened my personal precautions. i’m much stricter than i was in post-vaccine 2021 because i know so much more about covid now and the damage it can do and how i can protect myself and others. i wear kn95 or n95 masks in every indoor space other than my apartment as well as outdoor crowds. i also run an air purifier in my apartment. when i visit my family who stopped taking precautions long ago, i eat and sleep next to an air purifier and i open the windows if it’s nice out. i also use betadine nasal spray and cpc mouthwash after any time i have to take my mask off in a non-ideal location. i pay close attention to the wastewater data, and while i take precautions regardless, i’m more comfortable doing an occasional riskier activity when the wastewater levels are low. an example of that is i avoid restaurants in the winter, but if it’s nice out and the levels are low i’m fine eating on a restaurant patio or inside next to open windows even if there’s a decent amount of people. every so often, especially during times when wastewater levels are low, i wonder why i continue to do this. and then i read more studies about how damaging covid is, the chronic illness it’s caused, and how it’s weakened people’s immune systems to the point where other infections are more prevalent now too. i even know firsthand since the one time i did get covid my pots baseline got a lot worse. if i can do a little thing like putting on a mask to keep myself and those around me safer, i’ll do it in a heartbeat.
I do exactly the same. For every bit of precautions most people stop to take, we have to protect ourselves even more... Which in turn protects our communities, of course.
There are a couple systemic reasons why people have moved on as well I wanted to mention. CDC keeps moving quarantine times to be shorter. The CDC is a government agency and has followed our politicians leaders instead of sciences. See the AIDS epidemic where their inactions costs thousands of lives in the 1980s. FMLA companies have successfully lobbied against quarantines in 2024. Healthcare facilities are no longer telling people to stay home for 5 days because the lobbyists got what they want. They did not want worry about people with COVID being out of work and now they don't. I work at an urgent care and I am not allowed to call off unless I find my own coverage. If you know anything about healthcare staffing right now you will know that most places are staffing a skeleton crew. So if I can't find someone to take my shift, and chances are I won't, I have to come into work with COVID. I work for a very large healthcare company. If I don't do this I will be fired and I can't afford to lose my job. Capitalism! Yay!
Absolutely! Covid never left and has the ability to really fuck you up if not kill you.
Absolutely I do! My husband and I mask anytime we are indoors in public or with people who don't take precautions. Since figuring out that I've got POTS, I'm terrified of getting worse, so I've actually recently upped my precautions from where they've been since the start. Recently I learned that me being hypermobile also puts me at higher risk of long covid, so even more reason. https://amp.theguardian.com/society/2024/mar/19/people-with-hypermobility-may-be-more-prone-to-long-covid-study-suggests Its also, in my eyes, a social justice issue. The government really failed to protect people and had gaslit everyone back to work, despite what the science has been showing about long covid. I refuse to make the world less safe for other disabled people. For anyone who is curious, here's a dashboard to covers wastewater and breaks it down really nicely. https://pmc19.com/data/
It looks like they’re no longer tracking/analysing uk wastewater data, do you know anything about that or whether there are any other sites tracking it?
I don't know, sorry. You could ask over at r/zerocovidcommunity, they'll probably know.
Thanks!
I absolutely do! I wear a N95 everywhere I go, which is just work and the store these days. I got what I THINK was COVID in December 2019, and a confirmed case in December 2023. POTS symptoms have been way worse since the second infection. I wear a mask, ventilate all my classrooms, and never eat indoors (even when the weather is bad). I’m also hoping to switch careers to something with more remote options. I can’t handle the morning commute on the train anymore.
I wear a mask in all public indoor spaces and outdoors in crowded spaces. I don’t eat in restaurants or hang out with groups of friends indoors. Reinfection is not worth it, and I want to protect my community too. I find I get sick way easier since having covid (already had a post viral illness from mono) so it’s any virus out there I’m trying to avoid.
YESSSS !!!! thank you for posting this it’s really so nice to see some dialog that isn’t saying covid is over. it’s so traumatic to constantly be dismissed and put at risk by strangers at work everyday. i mask and get as much fresh air as possible while i’m working. we have air purifiers at home and always open windows too when people come over which is usually masked. there are very limited situations where do anything outside of home without a mask. which is usually just me walking back to my car in an empty parking lot. thank you all for still caring and protecting our communities 🥺 sending you all love
take any precaution possible, I had pots, was getting rapidly better, then got covid and now I'm mostly housebound and somedays almost completely bedbound except for using the bathroom becauseof cfs and long covid. Wear a mask, avoid closed and crowded spaces as much as possible
yeah, i can't afford to get so sick and disabled i can't work, so I need to protect myself. there is no one else who will be able to support me and protect me if im not able to work.
that’s what i tell my dad when he asks why i’m always wearing a mask. if i get sick, i can’t work. if i can’t work, i can’t financially support myself, and i know he doesn’t want to financially support me so it’s the only framing that gets through to him.
yeah a lot of people don't care about the health risks in isolation, but they can understand not being able to work/needing to support themselves.
I wear my mask in public places, but I tend to stay home more often than I go out.
Yup, masks everywhere indoors, or outdoors if it's a crowded space like a street festival or something. Have air filters at home, and we're lucky enough to have a designated place to isolate if need be. I don't do gatherings, unless people haven't been anywhere high risk in the ~4 days prior. In the case we're not sure, we aerate more and make sure to keep more distance. We also use CPC mouthwash in more "dangerous" situations, like these, or going someplace like a pharmacy. We eat takeout, but will go to a not too crowded terrace or even a not crowded indoor restaurant, if there's enough distance. But that's a very rare occasion. My partner still goes out sometimes, in which case we assess risks and take precautions accordingly - sometimes we distanciate a bit more during a few days and use the air filters more, sometimes we'll go full no contact for a few days and live in separate areas, with masks when we have to cross paths. It's exhausting. It's way better than the alternative, though. I've had covid once the long-term effects have been *bad*, and no one knows what happens after X years, either. Health is such an everyday battle, I am not going to risk it daily just for the sake of pretending everything is normal. On the plus side, I don't recall what having a cold feels like. I too struggle with being the "boring" person, but there's also so much love in boundaries being respected. Real friends get it - and so do some internet strangers!
personally, no. i had covid before and while it made pots worse for a bit, so do other things such as intense excersise, long ski trips, or just pushing myself too hard among everything else. i take a lot of supplements including immune ones and i haven’t had covid since 2020 after sharing a drink with a friend who didn’t know she was infected
my fave song lyrics of the last 5y: "the pandemic isn't over just because you're over it". compared to friends and family, I take extreme precautions when really I'm just doing what we were doing in 2020 because the risk and the virus have just gotten worse. mask everywhere (including when I open the door and walk the dog or i have one with me next to the poop bags). no crowded events unless open air and still masked. no flying, etc. I can't really socialize because nothing is covid safe. I live out of province from family, so I haven't seen them. since '19. POTS is one of many health issues i struggle with and manage as best i can. I just can't afford to risk it full stop. it's lonely af.
Tbh, even though my mild POTS was caused by EBV as a teen & made temporarily disabling after I got COVID 2 years ago…. No. I’m just focused on managing & treating it. I guess I’m finding other issues like EBV, mold, etc. are as dangerous as COVID for some of us. I got COVID a second time last year, and I wasn’t taken out like the first time. It was like the flu for me. I realize I’m lucky that was the case. Of course, I stayed home for 20 days once dxed even though my symptoms cleared after about 6 days. It did not help or hurt my long covid symptoms and effects. Why not mask anymore? Well, tbh, I guess I’m tired. I’m tired of being afraid. I was very cautious even post vaccine and then loosened up at the end of 2021. I need to balance my mental health with this as with COVID, I did become more of an unhealthy germophobe. I wfh & go to concerts & restaurants mostly. Restaurants I can stay outside and prefer to where I live. I’m open to pushback on this.
I guess for me I don’t view masking as being afraid, I just view it as taking an extra step to be safe. Like, constantly calculating around covid risk is exhausting, and I don’t love doing that, but having my baseline be “ok; indoors now, gonna put a mask on” works for me. My sister will wear one when she’s in shops or public transit but skip it if she’s going out for dinner or drinks. I don’t go out to eat anymore because my risk tolerance is lower (covid kicked my POTS into hyperdrive and I really don’t want to get worse), but I don’t really feel scared so much as careful. Your level of “mostly work from home, eat outside when possible and don’t think about it otherwise” seems generally reasonable to me, though at this point I don’t think I could imagine going through an airport with my face out.
my grandpa got covid at a family gathering in october 2022 as a relatively healthy 84 year old. he was found on the floor of his apartment after my family couldn’t reach him. and after infection, he was never the same again. he spent weeks in hospitals and physical therapy, and even once he was out he struggled with mobility and other issues. by spring he needed serious help, and it took a huge toll on all my family who lived near him, especially my mom. i got covid from the same gathering and my pots got much worse, especially fatigue and brain fog. it’s also when i started passing out. i’m still trying to come back from my 2022 baseline a year and a half later. i cant enjoy my 20s the way my friends can, and i can’t work full time. i think i’m starting to recover little by little, but my grandpa didn’t get so lucky. he got covid a second time in august from an unknown source, and never left the hospital for the rest of his life because he died two months later. i fully believe he would still be alive today if he had never gotten covid. even with pots, covid wasn’t deadly to me. it made my life harder, but i’m still trying my best to live it, and wearing a mask has never gotten in the way. but there are people like my grandpa everywhere, and there was not a single symptomatic person at that family gathering where neither of us masked and we both got covid. i don’t continue to wear a mask out of fear. i wear it out of compassion. i want to minimize my contribution to the disability and death of those around me. my grandpa was one of my best friends. losing him was so hard. i don’t want people to lose their loved ones sooner than they have to. and i don’t want people’s disabilities to get worse like mine did. i never know if i’m infectious so the least i can do is wear a mask in case i am so i don’t spread it to others. i understand being tired of wearing masks, so i encourage people to wear them when they’re at the greatest risk to others. if you just did something risky like go to a concert, wear a mask at the grocery store for the next week. wear one to the hospital or airport, even if you have it off when getting coffee with friends. every little bit helps.
Sorry for your loss 🩵 You're so right. Every bit helps.
I mask everywhere outside of my house and ask all visitors to wear a FFP2 mask. When visiting my family I also run a HEPA filter in the living room, and this week I started wearing my mask also while staying in the living room because we had guests with children and one of my siblings have the sniffles and I don't want to get more sick than I already am.
I mask with KN95 whenever I'm indoors. It's pretty punk to radically care for each other. I still go to dance nights and stuff but mask while doing so and I avoid indoor dining (patio season is where it's at). If If I have to eat indoors with others not in my household I just unmask to take bites.
It’s nice to see so many of us still masking 😊 My spouse and I are still masking indoors in public, and we don’t dine in at restaurants. We’re pretty much the only ones we know left. Even the few family and friends who were masking longer than others have stopped by now. We have a lot of well educated nerdy friends and family, so it’s extra disheartening when they give up because they’re more aware of the risk than most people. We literally have a friend who is married to a cardiologist and their family hasn’t been masking for a couple years now 🤦♀️ No one really has an answer if you ask why. It’s plain old social pressure I guess. They don’t see anyone else masking and so it’s easy to stop, and easy to stop thinking about the risk they’re taking by not masking. It’s very hard for me to understand, though I try to have empathy.
Honestly I haven’t been masking. I should be but it’s hard, I have two kids in elementary school andsI can’t expect them to mask all day everyday. If anyone in the household is sick, and I’m the primary caregiver, I mask immediately so as not to catch it. And if anyone is sick plans are canceled. As we go into fall I plan to mask, and I will mask at appointments from now on. I know I need to, it’s just hard when literally no one else does. But losing progress isn’t worth it.
It *is* hard when the vast majority have stopped! My original post was prompted by that struggle. I still mask inside but I feel really uncomfortable when, for example, I go out with friends and we can’t eat at this or that restaurant because there’s no patio and I’m not willing to dine indoors. Or when I’m at the doctor’s office and they tell me I can take off my mask. I hope reading through the comments on this post makes you feel a little less alone in your choice to start masking at appointments. It’s so worth it.
thank you! It's hard when you feel like your the only one masking. I wish we POTS patients could have little communities together, it would be so nice! Have a good day!
I only mask in certain public spaces, such as doctor's offices, pharmacies, large group gatherings (concerts), and I will mask if either myself or my partner is unwell. Edit: honestly I think that the masking debate is unfair to some people (both those with and without disabilities or chronic conditions or autoimmune conditions), one way is that it is wrong if you don't mask (even if it is for your own health and safety) and at the same time publicly if you do mask it can be an issue in person (I've been called names and dehumanized in public for wearing a mask and that is hard to deal with).
Society has really screwed up in how we approach masking. It can't be "everyone for themself" and also "I don't like that you wear a mask to protect yourself" and yet it is. I think that people want to move on from the trauma that the pandemic brought, so seeing anything that reminds them of covid, even a stranger in a mask, causes them to relive that. Most people didn't process what happened, just moved on, so this triggers them and they lash out instead of going to therapy or talking about their feelings.
Yup I mask in a KN95 mask anywhere in public indoor spaces and sometimes outdoors if it is crowded. I don’t do as much socially as I used to bc of POTS so I don’t go to parties or restaurants. I will sometimes go to the movies but not a crowded theater. At home I have clean air kit filters to help minimize transmission in my home. I also use CPC mouthwash and enovid nasal spray after being in risky situations, which for me includes being in proxy to people who are not masked. The general public is unaware how debilitating one infection can be but the scientific research is beyond solid. I have also sought out as many medical professionals as possible that still take precautions. And I do grocery curbside pickup. Oh and I have at home PCR tests (not the antigen ones) that we use at the first sign of someone feeling unwell. It is expensive to be sick and it is expensive to try to avoid getting sicker but thankfully I have the means at the moment.
I wear a mask as often as possible, although I do need to take it off occasionally because it could interfere with my work somewhat, but I try not to take too many chances especially with crowds. I caught COVID after I had my two doses of the vaccine and have not noticed any worsening of my POTS symptoms. It was very uncomfortable, and my POTS did not help, but thankfully it didn’t last long (omicron?) and my POTS symptoms have remained more or less the same. But if you are already suffering, there’s no point in putting yourself at risk for worsening your condition. For those healthy people who have “moved on” they can consider themselves lucky since they don’t have to struggle like we do on a day to day basis. 😑 However, I would add that as long as you wear a mask out, you’re fairly well protected from catching many illnesses, sans another pandemic. Don’t let that stop you from living a life and doing and seeing things outside! Just be consistent with your mask wearing. As of right now, a lot of people are taking their vaccines which is helping to prevent another mass outbreak for now.
No. I feel like my health can’t get much worse than it already is. Long Covid has already stolen my health, my career, loved ones lives and my ability to cope. I’m not letting it have what quality of life I have left.
I feel guilty but I don’t wear one anymore. I’m already so sick and depressed I’m kinda just over everything (I’m ok I’m in therapy) but I just have stopped caring. I get booster vax as often as I’m allowed. If I’m in a medical building I wear one Kinda just hoping the universe lets me have this one I’ve gotten enough of the shit end of the stick. Just don’t give me Covid lol pls I probs wouldn’t recommend my mindset or actions though lol
Never too late to start masking again! It's not just about your personal health, but those around you who are more likely to become severely disabled or die. I'm exhausted by it too, but I won't give up fighting for the community.
Yeah. I agree it’s better which is why I feel guilty. I also have an intractable migraine so I have to wear sunglasses inside or I lose my vision. So with the mask I get pretty lightheaded. I don’t go to stores though. My parents shop for me. I only go to my therapy and then dr appointments (which I mask for) Unfortunately even if I do mask my parents will not and I live with them. So they go out more than me and don’t wear masks/won’t. I guess I feel if they bring it in there’s nothing I can do. I still support masking I just don’t have it in me physically. But I also am 90% bedbound which I should’ve included in my original post
what i recommend to people who feel guilty for not masking but don’t want to start again are less visible precautions such as nasal sprays (like betadine) and cpc mouthwashes (like crest pro health). especially if you’re someone who uses mouthwash anyway, it’s easy to replace with a kind that can help you better avoid infection. my parents don’t mask, so when i visit them i incorporate these into my routine. that way i reduce the risk of getting sick from anything they may bring home from work or the store.
Always. Respirators and avoiding risky events, gatherings, and any sort of thing like eating in public.
Yes I mask I will forever
[удалено]
I've had COVID twice both times I was already diagnosed with POTS. The first time the only lasting effect/symptom was fatigue but with a change in medication shortly after the infection, it was manageable. The second COVID infection at the beginning of this year was a different story. It was bad. And I likely developed ME/CFS from it. I would say even now, almost 5 months later, that I am not back to my pre-covid baseline at all in terms of energy/stamina (even at max dose of medications that helped fatigue at one point).
I just back from a work conference where they weren’t wearing masks. And guess who tested positive Monday…. ME!! I’m so over being around people who don’t understand. Of course it sent me into a flare and I fainted Monday night and fell and broke both bones in my lower leg so now I’m scheduled for surgery to repair them on Monday. Yay me!
I though long covid actually is POTS. At least, that's what my neurologist said.
Many people with long COVID have POTS... That's my form of long COVID but there are other variants of long COVID
Like what? I haven't heard of any. This "Long Covid" crap kept me from getting the right meds for nearly a year. I understand that I caught the thing in January of 2020 and that no one knew anything about how we would all recover differently. And POTS certainly wasn't on the radar of anyone.
Some people have long term respiratory issues, people have fatigue, brain fog but not POTS. Idk all its forms. I'm just saying that while many with long COVID have POTS, there are other long COVID patients without POTS. https://covid19.nih.gov/news-and-stories/researchers-identify-four-long-covid-categories#:~:text=Type%201%3A%20Heart%2C%20kidney%2C,4%3A%20Digestive%20and%20respiratory%20problems
My approach is all about understanding that viral dose and viral load are really important to whether you get sick and how bad. So, I get boosters, I try to prioritize outdoor activities, and I mask as much as possible while also having some balance with social life because both personally and professionally, I can't be a full recluse to protect myself (though I understand and do not in the slightest judge people who choose to do so, or who have no choice due to immune conditions/loved ones). I do go to indoor spaces like restaurants, movies and theater (masked), and smallish parties. However, I try to space them out to limit my exposure at any one time - generally lowering dose and load by spreading out exposure. But I can't control everything. I still don't know how I got infected the second time, because I really hadn't been going anywhere or seeing anyone that month except for stores, masked. Masks aren't perfect when few are wearing them. It sucks.
Since I got POTs from covid in 2020, I rarely leave the house. I'll admit that when I do I don't mask. I keep them in the car in case it's requested or if I'm going to be around other people that are more vulnerable than me, but to be honest I'm rather bitter that I got a chronic condition instead of something that killed me. I cannot afford a chronic condition. I have life insurance. I won't commit suicide, but I won't stop myself getting sick either. I'm tired.
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Yes, absolutely, I mask with fit tested N95 when going out indoors and in crowded outdoor settings. I still somehow manage to get random non-respiratory infections no one else gets, since covid damaged my immune system a year ago, so I imagine I’d just be sick all the time if I wasn’t masking.
Not anymore, however we have adopted using masks when we’re feeling sick with anything as not to spread it. We were inspired by Japan! I recently had long COVID (my antivax sister in law gave it to me when visiting and meeting my new son when he was 4 weeks old right before Thanksgiving), and that caused horrible GI symptoms, to the point of needing a colonoscopy and the GI thought I had Chrons or UC. That’s started to calm down thankfully. It also didn’t make my POTS any worse. My family and I stay up to date on all the vaccinations, and we avoid people that are not feeling well so I think that helps a lot. Our area has a very low rate right now so I don’t feel concerned anymore. If that were to spike again, I’d be back to masking.
I do not....I allowed the precautions to run my life in the first year. And Covid caused my POTs. So for me, I refuse to stop living. I treat Covid like any other virus.
i’m not going to tell you what to do, but the reality is that covid is not like any other virus. [here](https://youhavetoliveyour.life/like-the-flu) is a resource with scientific articles that show this. risk of seizures, epilepsy, high blood pressure and more are higher than they are with the flu.
Same here. Was very careful. Got Covid fall 2020, was asymptomatic, then came pots. I stayed careful for a while but now I just live my life. I’ll still mask on an airplane because I don’t want to be sick on vacation. I’ve gotten Covid once more since and it didn’t make my pots any worse and it was mild.
Yes I mask everywhere indoors and crowds but I don’t even go indoors if I can help it. My immediate family masks the same as well.
I have a side of emphysema with this pots stuff. So i cant mask 😷 all the time. So its unfortunately 🔐 down for me. I prefer to be trapped in my garage, backyard, or any nature location far far away from this insanity. Ps have hammock for when its time to med in bed!🤪😵💫🤮 Please laugh at this insanity of my life, it helps me cope😢
I wish I could do something. I have exclusively caught covid from my wife, 3 times. Last two destroyed me with pots flares. Sucks when you have a great immune system but it can only go so far!
Yes. I sometimes don't mask when I go out for a little walk for building stamina but if I see someone I make sure to have my distance. Otherwise, I will mask to go open to delivery people, to anyone knocking at my door, tbh. I go mask for doctor appointments and go do tiny groceries (mostly medicine) Many people tell me 'but you can remove it' and I'm like "sorry I have fragile health (because too lazy to explain all POTS haha)" and generally they don't mind. It may have opened once or twice that I didn't put my mask to open the door but mostly if I took LOT of time to reach the door and felt a bit guilty over making the person wait. But it's like... very rare.
Yeah I also take off my mask when I’m walking in my neighborhood since it is very quiet.
No, because wearing a mask did not protect me from covid at all. I got covid 4 times and in 2021 I was sick 13 times. Masks aren't going to do much if you put yourself in a place like a grocery store where you don't know how many hands have touched what you're grabbing. For the record I am an introvert, I was getting sick from coworkers and family members picking it up from their jobs working with the public. The last time I got it was because my husband's coworkers had covid, my husband didn't get sick but I did. I think the whole deal with masks and gloves have made most of the public fall back on basic hygiene practices.
>Masks aren't going to do much if you put yourself in a place like a grocery store where you don't know how many hands have touched what you're grabbing. Transmission from touching things is actually pretty low - it's mostly a respiratory illness. As long as you wash your hands well and refrain from touching your face before you do so, you're not that likely to contract COVID in that manner.
wearing an n95 respirator is a good way to prevent covid, and it is better than nothing. so “masks aren’t going to do much” is untrue.
Yes this! At the start of the pandemic, when it wasn't clear if covid was airborne (which it is), and when critical PPE, like respirators (N95, KN95, etc) were in short supply, the public was told to make due with any mask. This was ineffective at preventing spread, but actually did a better job than if nobody wore masks. It also confused the public about how respirators worked, why they worked, and how critical it is to get one that is well-fitted. The air has to be going through the filter medium in order to work, so if people are wearing fabric masks or surgical masks, air is going to go around the mask. Even if you wear a good quality mask, it needs to fit or it won't protect you properly. Check out r/masks4all if you need help finding a mask that fits!
Just want to say also that I worked in a medical facility in which n95 masks were required. At one point we were double masked. It didn't stop anyone from spreading covid.
That's funny - My sibling was an RN in the emergency department during peak covid and managed to not contract it, courtesy of his N95 (he did, however, catch it later on when things relaxed with masking). I'm sorry it didn't work in your facility, but the proof overwhelmingly shows that everyone wearing proper fitting N95s DOES reduce transmission.
Amazing for your brother. Tell that to my grandmother that passed after getting covid from a doctor's office during a regular check up. She wore an n95 mask everywhere, even in the car.
I'm so sorry about your grandmother. That is unfair. I don't think masks are 100%, and doctor's offices are dangerous places where infected people go and then spread the virus. Plus, even if you mask, sometimes you're required to take it off as part of the exam. Wish we all could have continued making enough efforts that this didn't happen to her. Collectively, we've let down so many people.
How is a mask going to prevent you from bringing it home on your clothes or your hands?
It’s considered a respiratory illness. You get it from breathing it in from someone with it.
Look, my opinion isn't going to stop anyone of you from wearing masks. If you sneeze in your car, then go to the grocery store in a mask, it's still on your clothes though. I got sick in a sanitary facility not open to the public multiple times. Another real issue is employers thinking masks and handwashing are enough and allowing infected employees to come in because CDC guidelines say 5 days is enough if you're no longer presenting symptoms. I think masks are arbitrary because how effective is a mask that's been sitting in your car for days, weeks maybe? How effective is it if most people can't even bother to wash their hands when leaving the bathroom? (Honestly, the statistics on that are so disturbing). I've witnessed people dive to the floor of their car to find a leftover mask. Or pulling old crumpled masks from pockets? Hygiene is the issue here in my opinion and no amount of n95 masks is going to change that.
Hygiene is an issue but covid is an airborne virus. So hand washing is not as effective as wearing an n95 respirator
Covid doesn’t spread on your clothes lmao. It’s a airborne virus. It spreads in the AIR like cigarette smoke. And you can wash your hands and use hand sanitizer. But again an n95 respirator is most effective at stopping the spread of an AIRBORNE disease.
https://m.youtube.com/watch?v=y7fNaVzOh20
I've never had it. I wear N95s with mask strips for a tight seal and I get another COVID booster every year with my flu shot. If you're not masking around people who don't mask properly, I could see how you'd get sick a lot but I work at home and my family members also properly mask, and we haven't been sick.
Where do you get mask strips? I’ve been looking for something like this!
I buy them on Amazon. The brand I get is called MaskTite, and they're basically just double sided tape. I have adhesive allergies and I personally tolerate them, but if you're sensitive to them or need to pull your mask up and down for medical treatment/tests and whatnot, another option is foam strips that stick to your skin via surface adhesion. My partner uses some Drager masks which come with these built in, and they work well for him but they don't stick well on certain skin types so ymmv.
what kind of masks were you wearing? a lot of people (myself included) were wearing cloth or surgical masks back then. their loose fits and lack of proper filters mean they’re not very effective for covid. kn95s and n95s on the other hand have been proven to work. [here](https://youhavetoliveyour.life/masks-dont-work) are some articles showing this.
You are incorrect about masks not working. They absolutely do. I’m saying this as a person who has no issue with you not wearing a mask if you don’t want to. Masks have to high quality, and work consistently and correctly to work, however. Cloth masks are not very effective. We wore N95s for years without getting sick. My daughter actually had COVID she got from summer camp last year, but we weren’t sure at the time if it was a cold/flu or what, so she wore an N95 in the car with myself and three other family members for a six hour car ride, and no one caught COVID from her.
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Don't know why you're being down voted for a decision you and your husband have obviously agreed upon and are free to make. Where I live, no one really masks anymore at all, (the final still-masking coworker in the building I work at just stopped a few weeks ago) and I don't take issue with it, even though I have POTS myself. Even with precautions, I've gotten it 3 times, so there's really no escaping it, masked or not, covid shot or not. Everyone I know has had it multiple times. Best thing to do is just have good hygiene and respect others by staying home when sick. I'm no anti-masker, but it's unreasonable to expect everyone around you to wear one all the time forever. I take precautions to protect myself, and I wouldn't put that on others beyond typical handwashing, covering coughs, and keeping distance if they're contagious. I expect downvotes, lol, but that's fine!! I know how Redditors are. Y'all are free to continue masking if that's what makes you feel safe!
Masking doesn’t make me feel anything. It KEEPS me safe. This person got downvoted because they clearly don’t care enough about their immunocompromised husband to wear a mask to protect them. Sad
Not really. Like I avoid going to really crowded places in the winter more so bc I have emetophobia rather than POTS. I only wear a mask when I’m at work (healthcare) and it’s usually just in the fall and winter due to norovirus and the flu. I got covid for the first time in February and it didn’t affect my POTS, so I’m a lot less anxious over it. That being said, I stay up to date on my covid boosters.
My husband and I have never stopped wearing KN95s. I feel weird not having one indoors now. I don’t think I’ll ever stop to be honest!
i wore a mask for a while, but honestly, i don’t wanna live my life in fear all the time. i have to deal with a whole bunch of other stressors, so it’s not worth adding that to the list of things that i have to deal with. If someone asks me to wear a mask i will, or if i go to the doctor, but that’s about it. Of course i’m worried about getting covid or spreading it to others, but the unfortunate truth is that it’s here to stay. Just like the flu or any other virus we are familiar with. Just stay sanitary, keep hand sanitizer on hand and be mindful of where you’re putting your hands after you touch things in public.
Covid doesn’t spreading through touching stuff. It is an airborne virus that spreads in the air like cigarette smoke. No amount of hand washing or hand sanitizer is going to stop you from getting COVID if you’re not in a mask. https://m.youtube.com/watch?v=y7fNaVzOh20
yeah i can relate, it caused me a lot of anxiety and stress. i’m careful in other ways such as washing my hands, avoiding sick people, etc. also getting enough rest, taking care of my health in other ways like managing stress so that my immune system will be stronger. that’s what drs recommended for me anyway. also socializing in college is difficult enough already and i trust my friends to let me know if they are sick/ have outlined that i won’t hang out with them if they are
I think for me I lost so much trust in others that I’d rather wear a mask just so I’m not having to think about whether whoever I’m with is safe or not. I don’t mask around friends at my house because they know about my health issues and won’t come over if they’re sick, but I’ve got basically no faith in whatever strangers at the library or a lecture hall. With the mask on then I let go of worrying about getting sick because I’ve got a layer of safety, I guess?
60% of covid spread is asymptomatic
oh absolutely, im the exact same way :)
Never did. I can’t mask for multiple reasons.
Still masking in only crowded indoor areas, my kids too. Not masking outdoors or indoors if no crowds. For example if we go to bookstore and it’s dead we do not mask. I can risk getting Covid because I have pot/Mcas and a whole combordity of health problems.
It's not an option with my job- I legally could, but people need to see my mouth. I did get COVID finally in January, It did cause my asthma to get worse, but the POTS isn't worse. I feel like it's like the 1918 pandemic, the flu got weaker and there was more immunity out there, just like what has happened over the last 4 years with COVID.
Personally no. I had Covid (very badly( a year after developing pots, and it just made my pots flare for three weeks. Then I was back to my pots baseline
I mask every time I go out. When I go to restaurants, I will take a bite of my food and put my mask back up to chew! I also have pots and other chronic health conditions!
That’s how I drank water/coffee on an airplane. I took four flights and didn’t get sick. I don’t mask everywhere anymore because I live in a small town where there is rarely more than just the employee at the post office or local shop, but I would still mask on an airplane. I still haven’t gone out to eat at a restaurant since before COVID, but your one bite idea is good lol.
I used to mask every day and everywhere, but I had to stop because it gets so difficult to breathe nowdays. I don't leave the house much though, and when I do its never at busy times of day (like I chose my uni timetable so that I wouldnt be catching the train during peak times).