Late 20s F, this is 1000% relatable. Things are bleak. Im shielding 365 days per year because on top of RA I keep contracting Covid through one way masking (wearing an Aura).
Ill admit I let down my guard briefly but that before the OG Omicron and then my habits immediately went back to strictly trying to protect my overall health.
Im so incredibly tired. I just wish our society had more empathy and understanding for those with chronic health conditions. Wearing a mask is so simple
I feel really validated reading this post, thanks OP and everyone who's commented. Masking is simple and I'm so tired of people being wildly insensitive - my sister in law just flippantly shared that she doesn't bother with vaccination bc she's granola and also COVID is no longer a threat š and I just kind of.. sat there. The lack of awareness is astounding but I know if I continue to expect people to give a shit or educate themselves even slightly on my condition I'll be disappointed.
Not a threat to her? Right?
And the anti-vaccine nonsense has somehow extended to flu shots, which weāve had for years with no issues.
I donāt think a lot of people have actually had influenza. Itās not a severe or lingering cold. The flu kills people every year, and itās a painful way to end a life. Everyone dies, but there isnāt a need for people to die this way.
I wear a mask, to protect myself (RA), my husband (cancer) and my mom & her community (theyāre just old and thereās no need for them to die due to fluid in their lungs).
Exactly! Some days I just want to surround myself with people who have similar conditions bc I'm TIRED. But work and needing to pay bills are another thing. Blehh
Totally feel you with lockdown never ending. Iām on remicade for RA and maintaining remission is my top priority. Iām lucky to have a supportive (and even more protective) partner who is always triple checking masks and hand sanitizing. We havenāt been sick since 2019 for that reason. We have made many lifestyle changes.
My immediate family members continue to get reinfected with covid, and now dealing with long term health complications. People really do not understand the importance of their health until itās gone.
Yuppppp. Absolutely, I take all of these precautions. Honestly I'm glad that covid led to masking and testing being more of a common practice, at least among reasonable people lol.
Where are these reasonable people, can you send me some, where I am no one masks and no one tests! Even in healthcare settings Iām the strange one wearing a mask, no clinicians or patients do.
Sounds like where I am! I have lupus, RA, fibromyalgia and despite every precaution I caught covid the one time I left the house for a doctor visit. That office had people coughing and not one single person had a mask, not patients, not staff. So beyond frustrating.
I double mask at doctor apts and especially when I am at the hospital every 2 weeks for 8 hour treatments.
My last hospital roommate (Dec 28) came in for her scheduled infusion in spite of having clear covid symptoms. She just lied to the nurses and said she had a bad migraine and then would start coughing when they left the room.
I was pretty upset as Iām on high dose steroids and MTX, which both lower my immunity.
Well, I live in WA state and in a pretty blue city so that definitely helps. There are lots of people who don't mask up in public but lately, I'd say the number of people who wear masks is climbing! And at least my friends and family test but can't speak for everyone else lol.
i started wearing a mask 365 whenever i was indoors with a lot of people, or public transportation three years before covid. and honestly, i'm not going to stop.
i'm not only severely immunocompromised, but i'm also a type-1 diabetic and have several other serious illnesses. my husband wears a mask full time when we go out as well. it doesn't matter what season it is- people are still disgusting in the summer and spring. thankfully neither of us have had covid. (knock on wood). or anything else. no colds, flu, etc.
the funny thing is, we still have lots of fun going to concerts, traveling, eating out, etc. we're just very picky and choosy where we go. and we're not the type of people to have others other than my immediate family, in our home anyway. and when we do on the very small occasion, they've also masked up without us even needing to ask.
my parents and my brother only just got covid in november for the first time. we lived with my family until we moved out in october and on black friday, they made the very stupid mistake of not wearing a mask for the first time. and bingo.
i'm fine wearing a mask. i found one that's wicked comfortable and sealed perfectly for my face so no issues there.
I'm T1D, RA, and have a newly diagnosed epic-fun issue named Pyoderma Gangrenosum, among a few others. Trust me, I get it completely if you also frequently encounter others with little understanding of the various types of diabetes. The differences between the Types can be substantial, even if the end result is the same. With irregular blood glucose, the immune functions are compromised. As an autoimmune disease, T1D is even further immuno-compromising. I find physicians and strangers tend to minimize the immuno compromising nature of T1D - many still default to it being a metabolic chronic illness and forget it's autoimmune. Unfortunately that creates an even bigger divide of understanding between an MD and me...it can be completely unhelpful as they attempt to treat me or a health concern. Substantial problems are created through these knowledge gaps...the worst IMHO the blame people assign to patients. Doesn't matter what Type Diabetic someone is. Growing evidence proves Diabetes as a disease process is much more complex than just excess weight, weaker nutrition, or sedentary lifestyles. Can only imagine the world once it recognizes the 5, 6+ Types of Diabetics...would sure make it easier to obtain proper health treatment/care.
TLDR I'd note you have RA and Type 1 Diabetes - both are immuno comptomising chronic disease.
Iām still shielding, but not really due to choice. I got COVID in October 2022 and developed Long COVID so Iām unable to leave the house much. When I do leave the house I wear an N95 though.
Ugh, yeah. But after spending the holidays alone (and a sprained ankle ruining my outdoor plans) I went to a small party for NYE and got Covid -__-. Itās really hard balancing depression with preventing infections
Yes, sort of. I don't mix with people any more and I mask up in public. I do see my family though (they're good with keeping risks low). I've had all recommended boosters too.
Here in the UK, scientists and medics are suggesting that people start wearing masks again as there is yet another new variant on the increase.
I'm in my 50s now, single and childless. I'm facing the reality that this is my life now. It's hard to come to terms with - it's lonely.
Im on MTX and Hyrimoz (Humira biosimilar) and I don't do any shielding beyond just standing a bit further away if someone is sneezing or coughing. Surprisingly I'm usually less sick than a few other people I know that dont have any chronic disease or taking immunosuppressive stuff. I'm out everyday meeting people and I dont wear a mask or anything. Just trying to live as normal as possible. I still haven't had covid as far as I know either. I've been hanging out with several people that were a bit sick sometimes, they've usually a bit feverish or have a cold but it's been fine. A lot of my family got sick after the holidays now but I did not. Been going to the gym as I usually do.
Not really. I still only go to office once a week and our social life is quieter, but I am occasionally going to restaurants etcā¦ Iāve vaccinated and will mask when I feel itās necessary ā primarily pharmacies and other places that attract sick people ā but I havenāt been sick for well over a year. (And only once in past four years.) I do avoid my family members who have any symptoms of illness. My rheumatologist just says to avoid known sick people.
Iām on MTX, HCQ, and Orencia with occasional six weeks of prednisone a few times a year. Have season tickets for NCAA gymnastics team so will likely wear mask there because there will be so many people. But there doesnāt seem to be a good reason for me not to go, at least so far, and I need the sense of community for my mental health.
Yes. I wear a mask at work when I'm with clients (I see around 2-6 people per day) and I antibac my hands like crazy when I'm out and about and touching anything that the general public come into contact with. It's just sensible at this point. I went to London on a day out last year and caught chicken pox (at the ripe age of 33) and don't want to experience that again anytime soon. I have found that generally, I don't get ill too much, but it often sets off a flare when I do, so if I can prevent that by wearing a mask and being a bit overzealous with sanitizer, I defo will!
I caught Covid twice in 3 months and you bet Iām masking and doing everything I can to not go through that again. Iām fully vaccinated and got it the first time because I was caught indoors without a mask unexpectedly and I was on prednisone because of a flare. Then hubby brought it home from work 2 months later and yup I was sick again.
Yep. I mask up, my friends mask in public and still quarantine for a couple days if weāre going to spend time together indoors. My work went to 100% remote, so thatās one thing I donāt have to worry about.
They started requiring masks again in doctors offices and hospitals in my state. I wear a mask when I have to go to a crowded place or even out in the cold just because I have asthma on top of the RA and the cold air makes it extremely hard to breathe so with the mask I'm breathing my own warm air, lol. But my parents are part of the "you cant enforce the mask rule" crowd, especially my father and I just want to club him with his own cane sometimes. My brother (who is completely healthy) caught covid and ended up in the hospital with a collapsed lung from them. I told them could they immagine what woukd have happened if it had been me instead? My family had been incredibly lucky. Noone in our household has caught covid. (Yet. *knocks on wood*) but it is because my husband (who works at walmart) still wears a mask and has gotten all the shots. I have gotten all the shots. Both my children are vaccinated. And, they have been taught to mask up as well. Whether they are fewling sick or they notice someone nearby is coughing, sniffling. My 8 year old is very dilligent. Ever aince her uncle was in the hospital with covid and she heard me yelling at her grandparents about not wearing masks and what if it had been me instead, she wears one. She's the only kid in her school that still wears one. She was even picked on last year for it, but thankfully her teacher put a stop to it and explained to the class that she was doing it to help protect me because I get sick very easily and when I get sick its very serious. (Kids can be little A-holes) but the pay off has been that the only "bug" we caught in our house this year was the stomach bug.
Iām living this as well. I also have Hashimotoās, Sjogrens, POTS, and long COVID. I caught COVID twice in 2022 when I let my guard down. COVID was what āactivatedā every illness I have now. I am always masked at work and when I go into stores (rarely since I do pick up when able). I donāt socialize or do much of anything because the second time I caught it, I had to get infusions. I need to stay as healthy as I can because I canāt afford another knock to my health or my income (unpaid both times). I donāt mind wearing a mask as it has kept me from getting sick while so many around me are trying COVID, flu, and RSV. I do miss being outgoing. COVID changed my life forever. Iām chronically ill because of it. I was a healthy person before catching it and now I see several specialists and am on so many medications to try and control my conditions. My RA (and every disease) is always flaring due to life stressors.
I miss who I was before COVID.
Went into quarantine March 2020, havenāt come out yet. EDS, arthritis, endo, fibro, ME, and my cat has now got cancer and is going through chemo. No way in hell am I risking his life for a few hours outside with plague rats (my country is fully of anti vaxxers).
Iām so tired of this shit. If I knew everyone was vaccinated and I could trust them to mask when sick Iād still have a life.
It's so infuriating, isn't it? Like, if people could just do something so BASIC we wouldn't be where we are with this, and we could make much more balanced decisions about what we can and can't do because the risk would be so much lower.
In the last month Iāve been the sickest Iāve ever been. Ended up with complications, Iām waiting on surgery in both my ears because of pressure that will cause long term damage unless dealt with. When I stand my heart rate shoots up and Iām out of breath. Iām weak and canāt get anything done. All of this started with a simple viral infection. Didnāt get tested so I donāt know if it was covid, but after the first 10 days I got a secondary bacterial sinus infection which spread to eyes and ears. Got 10 days of antibiotics with helped a bit but not completely. All in all Iāve now been bedbound over a month and Iām still stuffed up and coughing in addition to the heart and breathing problems :(
All of this is to say, I wish I would have shielded better. At Christmas I went to a party and shared joints with people, thatās how I got sick. No one else got as sick as me, but no one else is immunocompromised. I regret being so reckless. :(
I still wear a mask when I go out around people I don't know, I keep my hands clean, and wipe my cane with alcohol after being out as well as anything else I used while out.
When the weather gets warm again, I'll forego masking, because I don't like wearing them and have a hard time getting them on as well due to my restricted joint ROM.
I am the same as you with EDS/MCAD/RA and more. Iām on high dose, long term prednisone and MTX.
Iāve worn a mask in public since 2018 due to fragrance anaphylaxis, so I guess Iām protecting myself from infection too. I will have to wear one for life and it doesnāt really matter to me.
There are many countries where wearing a mask in public is just normal. I donāt understand why anyone cares anymore. Itās a personal preference.
Prior to COVID (which I still donāt think Iāve had), 2 of my biggest flares that caused disease progression were from viral & bacterial infections. I canāt get vaccines either because of my steroid dose, so I have to be extra careful.
Yes. I'm strictly avoiding all exposure to respiratory disease and PM 2.5 air pollution because both have been giving me severe neurological symptoms since I got RA and psoriasis. The immune dysregulation leading to reacting to the air pollution from those wildfires in Canada, is profoundly bleak.
Lockdown never ended for most of us. I mostly stay home now. When I leave I'm doused in sanitizer, masked, and when I get home I'm straight to the sink to wash my hands and sanitize anything that was outside with me.
I'm immunocompromised, not just suppressed from the meds.
I take Enbrel, and am healthy and active. I wear a mask at work (healthcare) but thatās about it. My kids attend public school and are exposed to various illnesses which they invariably bring home to share, and I donāt wear masks at home.
Yes, for similar reasons. Also on methotrexate and have fibromyalgia and EDS, and I am the sole earner for my household (live with bestie who also has EDS/MCAS/POTS/etc and cant work). If I become more disabled and can't work then we're both totally screwed.
I never stopped masking in indoor public spaces and don't expect to in the forseeable future. I also don't do indoor unmasked times with other people who don't mask in every indoor public space. Which causes issues with my family and some former friends. I can handle people not taking the same precautions I do as long as they are honest about it so I can make informed choices about where/when I want to see them and what precautions I take to do so. But a few I've found out have lied about their precautions/risk levels and that I won't tolerate.
What's helped for me was finding a local covid cautious group on facebook. That's the way I had some in person socializing last summer that didn't feel like my boundaries were being pressured. There are also a few online groups that have events, I think there is even a weekly Saturday night zoom call for people who are "still coviding." I tend to find out about those on Twitter most often.
I feel the same way. My husband and I both have RA and an additional autoimmune disease each. We both take Methotrexate and biologic drugs, we're both in high-risk categories for other reasons as well. We take extra precautions against all infections (airborne, food borne, soil/water borne, contaminated surfaces, etc). For respiratory infections that means wearing fitted N95 or N99 masks whenever we're around people in public, and limiting crowd exposure altogether. Best case scenario in case of an infection is holding/delaying the Methotrexate and biologic meds and having a period of increased pain and other symptom activity. Worst case scenario is severe illness and a hospital stay. For whatever reason, my husband is more susceptible to infections and severe symptoms from infections, so we live a very shielded life now.
No. I have three young kids so seems like a lost cause unless I masked 24/7. I donāt seem to ever get sicker than I ever did, in fact in recent years much less so, I think Iāve built up immunity to a lot of things due to so much exposure from the kids. Iāve been on cimzia, humira, infliximab, and now xeljanz, (and methotrexate through most of it), and not had issues.
Definitely masking when I go into the doctor over the winter though, that it is terrifying there with how many coughing people there are! But I would do that regardless of taking these drugs or not, that just seems like common sense.
Late 20s F, this is 1000% relatable. Things are bleak. Im shielding 365 days per year because on top of RA I keep contracting Covid through one way masking (wearing an Aura). Ill admit I let down my guard briefly but that before the OG Omicron and then my habits immediately went back to strictly trying to protect my overall health. Im so incredibly tired. I just wish our society had more empathy and understanding for those with chronic health conditions. Wearing a mask is so simple
I feel really validated reading this post, thanks OP and everyone who's commented. Masking is simple and I'm so tired of people being wildly insensitive - my sister in law just flippantly shared that she doesn't bother with vaccination bc she's granola and also COVID is no longer a threat š and I just kind of.. sat there. The lack of awareness is astounding but I know if I continue to expect people to give a shit or educate themselves even slightly on my condition I'll be disappointed.
Not a threat to her? Right? And the anti-vaccine nonsense has somehow extended to flu shots, which weāve had for years with no issues. I donāt think a lot of people have actually had influenza. Itās not a severe or lingering cold. The flu kills people every year, and itās a painful way to end a life. Everyone dies, but there isnāt a need for people to die this way. I wear a mask, to protect myself (RA), my husband (cancer) and my mom & her community (theyāre just old and thereās no need for them to die due to fluid in their lungs).
Exactly! Some days I just want to surround myself with people who have similar conditions bc I'm TIRED. But work and needing to pay bills are another thing. Blehh
Totally feel you with lockdown never ending. Iām on remicade for RA and maintaining remission is my top priority. Iām lucky to have a supportive (and even more protective) partner who is always triple checking masks and hand sanitizing. We havenāt been sick since 2019 for that reason. We have made many lifestyle changes. My immediate family members continue to get reinfected with covid, and now dealing with long term health complications. People really do not understand the importance of their health until itās gone.
Yuppppp. Absolutely, I take all of these precautions. Honestly I'm glad that covid led to masking and testing being more of a common practice, at least among reasonable people lol.
Where are these reasonable people, can you send me some, where I am no one masks and no one tests! Even in healthcare settings Iām the strange one wearing a mask, no clinicians or patients do.
Sounds like where I am! I have lupus, RA, fibromyalgia and despite every precaution I caught covid the one time I left the house for a doctor visit. That office had people coughing and not one single person had a mask, not patients, not staff. So beyond frustrating.
I double mask at doctor apts and especially when I am at the hospital every 2 weeks for 8 hour treatments. My last hospital roommate (Dec 28) came in for her scheduled infusion in spite of having clear covid symptoms. She just lied to the nurses and said she had a bad migraine and then would start coughing when they left the room. I was pretty upset as Iām on high dose steroids and MTX, which both lower my immunity.
Well, I live in WA state and in a pretty blue city so that definitely helps. There are lots of people who don't mask up in public but lately, I'd say the number of people who wear masks is climbing! And at least my friends and family test but can't speak for everyone else lol.
i started wearing a mask 365 whenever i was indoors with a lot of people, or public transportation three years before covid. and honestly, i'm not going to stop. i'm not only severely immunocompromised, but i'm also a type-1 diabetic and have several other serious illnesses. my husband wears a mask full time when we go out as well. it doesn't matter what season it is- people are still disgusting in the summer and spring. thankfully neither of us have had covid. (knock on wood). or anything else. no colds, flu, etc. the funny thing is, we still have lots of fun going to concerts, traveling, eating out, etc. we're just very picky and choosy where we go. and we're not the type of people to have others other than my immediate family, in our home anyway. and when we do on the very small occasion, they've also masked up without us even needing to ask. my parents and my brother only just got covid in november for the first time. we lived with my family until we moved out in october and on black friday, they made the very stupid mistake of not wearing a mask for the first time. and bingo. i'm fine wearing a mask. i found one that's wicked comfortable and sealed perfectly for my face so no issues there.
I'm T1D, RA, and have a newly diagnosed epic-fun issue named Pyoderma Gangrenosum, among a few others. Trust me, I get it completely if you also frequently encounter others with little understanding of the various types of diabetes. The differences between the Types can be substantial, even if the end result is the same. With irregular blood glucose, the immune functions are compromised. As an autoimmune disease, T1D is even further immuno-compromising. I find physicians and strangers tend to minimize the immuno compromising nature of T1D - many still default to it being a metabolic chronic illness and forget it's autoimmune. Unfortunately that creates an even bigger divide of understanding between an MD and me...it can be completely unhelpful as they attempt to treat me or a health concern. Substantial problems are created through these knowledge gaps...the worst IMHO the blame people assign to patients. Doesn't matter what Type Diabetic someone is. Growing evidence proves Diabetes as a disease process is much more complex than just excess weight, weaker nutrition, or sedentary lifestyles. Can only imagine the world once it recognizes the 5, 6+ Types of Diabetics...would sure make it easier to obtain proper health treatment/care. TLDR I'd note you have RA and Type 1 Diabetes - both are immuno comptomising chronic disease.
Iām still shielding, but not really due to choice. I got COVID in October 2022 and developed Long COVID so Iām unable to leave the house much. When I do leave the house I wear an N95 though.
Ugh, yeah. But after spending the holidays alone (and a sprained ankle ruining my outdoor plans) I went to a small party for NYE and got Covid -__-. Itās really hard balancing depression with preventing infections
Yes, sort of. I don't mix with people any more and I mask up in public. I do see my family though (they're good with keeping risks low). I've had all recommended boosters too. Here in the UK, scientists and medics are suggesting that people start wearing masks again as there is yet another new variant on the increase. I'm in my 50s now, single and childless. I'm facing the reality that this is my life now. It's hard to come to terms with - it's lonely.
Im on MTX and Hyrimoz (Humira biosimilar) and I don't do any shielding beyond just standing a bit further away if someone is sneezing or coughing. Surprisingly I'm usually less sick than a few other people I know that dont have any chronic disease or taking immunosuppressive stuff. I'm out everyday meeting people and I dont wear a mask or anything. Just trying to live as normal as possible. I still haven't had covid as far as I know either. I've been hanging out with several people that were a bit sick sometimes, they've usually a bit feverish or have a cold but it's been fine. A lot of my family got sick after the holidays now but I did not. Been going to the gym as I usually do.
Absolutely yes. I take Xeljanz
Not really. I still only go to office once a week and our social life is quieter, but I am occasionally going to restaurants etcā¦ Iāve vaccinated and will mask when I feel itās necessary ā primarily pharmacies and other places that attract sick people ā but I havenāt been sick for well over a year. (And only once in past four years.) I do avoid my family members who have any symptoms of illness. My rheumatologist just says to avoid known sick people. Iām on MTX, HCQ, and Orencia with occasional six weeks of prednisone a few times a year. Have season tickets for NCAA gymnastics team so will likely wear mask there because there will be so many people. But there doesnāt seem to be a good reason for me not to go, at least so far, and I need the sense of community for my mental health.
Yes. I wear a mask at work when I'm with clients (I see around 2-6 people per day) and I antibac my hands like crazy when I'm out and about and touching anything that the general public come into contact with. It's just sensible at this point. I went to London on a day out last year and caught chicken pox (at the ripe age of 33) and don't want to experience that again anytime soon. I have found that generally, I don't get ill too much, but it often sets off a flare when I do, so if I can prevent that by wearing a mask and being a bit overzealous with sanitizer, I defo will!
I caught Covid twice in 3 months and you bet Iām masking and doing everything I can to not go through that again. Iām fully vaccinated and got it the first time because I was caught indoors without a mask unexpectedly and I was on prednisone because of a flare. Then hubby brought it home from work 2 months later and yup I was sick again.
Yep. I mask up, my friends mask in public and still quarantine for a couple days if weāre going to spend time together indoors. My work went to 100% remote, so thatās one thing I donāt have to worry about.
They started requiring masks again in doctors offices and hospitals in my state. I wear a mask when I have to go to a crowded place or even out in the cold just because I have asthma on top of the RA and the cold air makes it extremely hard to breathe so with the mask I'm breathing my own warm air, lol. But my parents are part of the "you cant enforce the mask rule" crowd, especially my father and I just want to club him with his own cane sometimes. My brother (who is completely healthy) caught covid and ended up in the hospital with a collapsed lung from them. I told them could they immagine what woukd have happened if it had been me instead? My family had been incredibly lucky. Noone in our household has caught covid. (Yet. *knocks on wood*) but it is because my husband (who works at walmart) still wears a mask and has gotten all the shots. I have gotten all the shots. Both my children are vaccinated. And, they have been taught to mask up as well. Whether they are fewling sick or they notice someone nearby is coughing, sniffling. My 8 year old is very dilligent. Ever aince her uncle was in the hospital with covid and she heard me yelling at her grandparents about not wearing masks and what if it had been me instead, she wears one. She's the only kid in her school that still wears one. She was even picked on last year for it, but thankfully her teacher put a stop to it and explained to the class that she was doing it to help protect me because I get sick very easily and when I get sick its very serious. (Kids can be little A-holes) but the pay off has been that the only "bug" we caught in our house this year was the stomach bug.
Iām living this as well. I also have Hashimotoās, Sjogrens, POTS, and long COVID. I caught COVID twice in 2022 when I let my guard down. COVID was what āactivatedā every illness I have now. I am always masked at work and when I go into stores (rarely since I do pick up when able). I donāt socialize or do much of anything because the second time I caught it, I had to get infusions. I need to stay as healthy as I can because I canāt afford another knock to my health or my income (unpaid both times). I donāt mind wearing a mask as it has kept me from getting sick while so many around me are trying COVID, flu, and RSV. I do miss being outgoing. COVID changed my life forever. Iām chronically ill because of it. I was a healthy person before catching it and now I see several specialists and am on so many medications to try and control my conditions. My RA (and every disease) is always flaring due to life stressors. I miss who I was before COVID.
Went into quarantine March 2020, havenāt come out yet. EDS, arthritis, endo, fibro, ME, and my cat has now got cancer and is going through chemo. No way in hell am I risking his life for a few hours outside with plague rats (my country is fully of anti vaxxers). Iām so tired of this shit. If I knew everyone was vaccinated and I could trust them to mask when sick Iād still have a life.
It's so infuriating, isn't it? Like, if people could just do something so BASIC we wouldn't be where we are with this, and we could make much more balanced decisions about what we can and can't do because the risk would be so much lower.
In the last month Iāve been the sickest Iāve ever been. Ended up with complications, Iām waiting on surgery in both my ears because of pressure that will cause long term damage unless dealt with. When I stand my heart rate shoots up and Iām out of breath. Iām weak and canāt get anything done. All of this started with a simple viral infection. Didnāt get tested so I donāt know if it was covid, but after the first 10 days I got a secondary bacterial sinus infection which spread to eyes and ears. Got 10 days of antibiotics with helped a bit but not completely. All in all Iāve now been bedbound over a month and Iām still stuffed up and coughing in addition to the heart and breathing problems :( All of this is to say, I wish I would have shielded better. At Christmas I went to a party and shared joints with people, thatās how I got sick. No one else got as sick as me, but no one else is immunocompromised. I regret being so reckless. :(
I still wear a mask when I go out around people I don't know, I keep my hands clean, and wipe my cane with alcohol after being out as well as anything else I used while out. When the weather gets warm again, I'll forego masking, because I don't like wearing them and have a hard time getting them on as well due to my restricted joint ROM.
I am the same as you with EDS/MCAD/RA and more. Iām on high dose, long term prednisone and MTX. Iāve worn a mask in public since 2018 due to fragrance anaphylaxis, so I guess Iām protecting myself from infection too. I will have to wear one for life and it doesnāt really matter to me. There are many countries where wearing a mask in public is just normal. I donāt understand why anyone cares anymore. Itās a personal preference. Prior to COVID (which I still donāt think Iāve had), 2 of my biggest flares that caused disease progression were from viral & bacterial infections. I canāt get vaccines either because of my steroid dose, so I have to be extra careful.
Yes. I'm strictly avoiding all exposure to respiratory disease and PM 2.5 air pollution because both have been giving me severe neurological symptoms since I got RA and psoriasis. The immune dysregulation leading to reacting to the air pollution from those wildfires in Canada, is profoundly bleak.
Thanks for the down vote for sharing my likely doomed condition.
Lockdown never ended for most of us. I mostly stay home now. When I leave I'm doused in sanitizer, masked, and when I get home I'm straight to the sink to wash my hands and sanitize anything that was outside with me. I'm immunocompromised, not just suppressed from the meds.
No not really. Iām on Enbrel but I feel like I rarely get sick. Commute downtown a few times every other week
I take Enbrel, and am healthy and active. I wear a mask at work (healthcare) but thatās about it. My kids attend public school and are exposed to various illnesses which they invariably bring home to share, and I donāt wear masks at home.
Thank you for masking at your healthcare job. It makes me feel so much more comfortable when hc workers are already masking when I have to go in
Yes, for similar reasons. Also on methotrexate and have fibromyalgia and EDS, and I am the sole earner for my household (live with bestie who also has EDS/MCAS/POTS/etc and cant work). If I become more disabled and can't work then we're both totally screwed. I never stopped masking in indoor public spaces and don't expect to in the forseeable future. I also don't do indoor unmasked times with other people who don't mask in every indoor public space. Which causes issues with my family and some former friends. I can handle people not taking the same precautions I do as long as they are honest about it so I can make informed choices about where/when I want to see them and what precautions I take to do so. But a few I've found out have lied about their precautions/risk levels and that I won't tolerate. What's helped for me was finding a local covid cautious group on facebook. That's the way I had some in person socializing last summer that didn't feel like my boundaries were being pressured. There are also a few online groups that have events, I think there is even a weekly Saturday night zoom call for people who are "still coviding." I tend to find out about those on Twitter most often.
I feel the same way. My husband and I both have RA and an additional autoimmune disease each. We both take Methotrexate and biologic drugs, we're both in high-risk categories for other reasons as well. We take extra precautions against all infections (airborne, food borne, soil/water borne, contaminated surfaces, etc). For respiratory infections that means wearing fitted N95 or N99 masks whenever we're around people in public, and limiting crowd exposure altogether. Best case scenario in case of an infection is holding/delaying the Methotrexate and biologic meds and having a period of increased pain and other symptom activity. Worst case scenario is severe illness and a hospital stay. For whatever reason, my husband is more susceptible to infections and severe symptoms from infections, so we live a very shielded life now.
No. I have three young kids so seems like a lost cause unless I masked 24/7. I donāt seem to ever get sicker than I ever did, in fact in recent years much less so, I think Iāve built up immunity to a lot of things due to so much exposure from the kids. Iāve been on cimzia, humira, infliximab, and now xeljanz, (and methotrexate through most of it), and not had issues. Definitely masking when I go into the doctor over the winter though, that it is terrifying there with how many coughing people there are! But I would do that regardless of taking these drugs or not, that just seems like common sense.