Fellow people who are still genuinely #CovidCautious, particularly those who are also single, live alone, and have basically lost your entire (already small) social circle over the last few years because no one else is taking any precautions anymore (...just me?).....: How are you keeping life worth living these days? I must admit I'm struggling.
A brief run-down of my standard practice for #COVIDcautious hairdresser housecalls etc.
The client and I both take RATs the morning of the appointment. I wear a mask, I recommend the client does too (although can be tricky with sideshaves et al), and ideally we work in a room where there's windows that open for ventilation.
On nice days I've cut hair on people's decks, wind permitting. 😂
I also have my CO2 monitor, and I am considering saving up for another #HEPA filter that I can bring +
#CovidCautious community, I’m tabling at an academic conference next month to spread awareness of both the Public Health Pledge (@phpledge) and #COVID19 precautions as paths toward inclusivity, and I’m trying to think of what would make this table both useful and appealing to passersby. Does anyone have suggestions on what else I can do, in terms of signage, giveaways, activities, etc.?
“Congrats - you’re old! Maybe this year you will try and be normal again.”
This was a birthday message I received from a relative. They’re referring to my disabilities and to my Covid caution. They consider both “abnormal”.
I’m sick & tired of the insinuation that being disabled means we’re abnormal. That we simply need to “try harder” and we will no longer be sick - or that our illnesses are a personal failing. Temporarily abled people always seem to think it’s OUR fault we are sick.
This assumption stems from people being unable to comprehend that certain illnesses can be permanent but not fatal.
People tend to see illness as two pronged - you get sick and die or you get sick and recover. They don't understand the spectrum that lies in between.
As a result if you become chronically ill - people may be supportive at first but that support wanes when you don't get better. They assume if you're not improving and you haven't died that you're either faking, not really "that sick" or that you don't want to get well.
It's incredibly hurtful considering most chronically ill people spend the vast majority of their energy trying to be well. We do so much to try and retain or improve our baseline - but most of it is stuff others will never see. Compromise & sacrifice are daily occurrences.
The reality is that you can't "try harder" your way out of chronic illness. If you could no one would be sick. We try very hard - but our bodies aren’t well. Just because something doesn't kill you doesn't mean it won't debilitate you and rob you of your quality of life.
I know that's unpleasant for many people to think about - but looking away & refusing to acknowledge our reality doesn't change our situation. It just hurts us and lets you remain in denial. As for faking? Most people are trying to fake being WELL.
Putting on a happy face to make others more comfortable. There's no benefit to faking disabilities. It's a hard life with very little support & many cruel comments like the one I received.
Finally let's consider the word "normal". This person was referring in part to my illnesses (as they see them as an abnormality) and in part to my COVID caution which they see as nonsensical & unnecessary.
Disabled & chronically ill individuals are not abnormal. Health does not equal normalcy.
Health is a temporary state for everyone - not a bar to measure one's worth or commonality with others. It's discriminatory, ableist and cruel to suggest we are somehow abnormal.
As for the Covid caution - I look around at what we are doing and can't understand how anyone could think it abnormal that I'm trying to avoid catching (and spreading) this virus. When did it become "normal" to catch bugs all the time?
When did we decide it was "normal" to throw away our health, the health of the elderly, vulnerable and children? When did we stop caring for other people? We have become a society that looks down on people trying to protect themselves & others. That's ANYTHING but normal.
I don't think anything about the way society at large is responding to covid is “normal" but if it IS? I don't want any part of it. I'm proud to be someone who still cares about what's left of my health. Who cares about the health of others & breaking chains of transmission 1/2
Awhile back I went to a specialist for unexplained & painful lower leg swelling. His diagnosis?
“Maybe your legs are just getting fat.”
Horrified…I asked how many people gain weight ONLY in their calves. He shrugged me off. A 🧵 on knowing your body & advocating for care
This doctor did NO tests before deciding it was weight gain. Wouldn’t discuss it with me further & wouldn’t permit me a second opinion. I went home completely dejected and also worried because I KNEW something was wrong.
For the next few days I elevated my legs as much as possible and tried to gently massage them to see if it helped. They just kept getting bigger. Eventually they started weeping (fluid was seeping out of my skin) and my ankles were dislocating from the pressure.
So I went to the ER. I was actually nervous about going because I could only imagine what that doctor had put in my chart. Thankfully I had a doctor who took the swelling very seriously and ordered a wide range of tests (and immediately put me on bed rest to protect my ankles)
Turns out it was a combination of third spacing from my MCAS (when the fluid doesn’t stay in the vascular system & leaks out into the tissues - can be a big issue if you have POTS as well) and low albumin. Dangerously low albumin.
Needless to say I was suffering from malnutrition due to my extensive GI issues and that was causing the swelling. It most definitely wasn’t weight gain. I was underweight with the exception of my legs.
I never knew that low albumin could cause painful swelling like that - nor did I even think that I was suffering from malnutrition. But with both POTS & MCAS it makes sense.
Our digestive systems are controlled by the autonomic nervous system (the system malfunctioning when you have POTS) so it’s not uncommon to experience vomiting, diarrhea & other gastric complaints.
MCAS only compounds the issue by limiting the foods you can tolerate and also causing vomiting and diarrhea. The two conditions make getting adequate nutrition a challenge - especially if you’re on the severe end of the spectrum
I’m very grateful to the doctor who figured it out and helped me get homecare so I could get proper nutrition & stay off my feet while the swelling was at its worst. But it took a LOT of courage to go to the ER after being so rudely dismissed.
This is a lesson in the importance of knowing your own body & having an advocate with you whenever possible. I KNEW something serious was wrong but I had no one with me to challenge the first dismissive doctor. And he was completely unwilling to listen to me.
Don’t ever feel like you can’t get a second opinion or go to a different hospital if you feel you aren’t being taken seriously. And don’t ever apologize for advocating for your health. If you don’t have someone who can go with you - try & phone or video a friend.
Lastly can we please start listening more to patients? We know our bodies best and when you dismiss us it causes not only physical damage - but emotional damage too. You make it harder for us to seek care in the future.
Patients shouldn’t be dismissed without any tests being run. Had I not gone to the ER I could have ended up with life threatening cardiac issues from the electrolyte & fluid imbalance. A simple lab test would have confirmed the diagnosis had the first doctor cared to do them.
This experience was also an excellent reminder of the far reaching effects of dysautonomia & MCAS. It’s important to be as educated as possible in these conditions & the strange downstream complications they can cause.
And remember dismissal & gaslighting is often far worse for marginalized individuals. There’s a LOT of bias in medicine. If you’re someone in a position of privilege please call it out when you see it - and offer to be an ally to those who need support. Allies save lives
We appear to be having the best break from the #covid19#pandemic in a year, with #wastewater levels in my region lower than they’ve been for probably 95% of the past two years.
But I’m having a hard time feeling great about it. The damage to my social life has been done. I don’t trust or respect most people anymore, and I’m not sure when I’ll ever again walk around breathing unfiltered indoor lung exhaust.
And we all know it’s just a matter of weeks before that line goes back up,
To those few #CovidCautious types who know #CovidIsNotOver regardless of short-term oscillations in this chaotic system of variant waves ebbing and flowing, I’d appreciate any thoughts you care to offer about your own mindset during this lull we seem to be having. Any reasonable reductions in vigilance you personally are allowing yourself right now, while that seems a bit less dangerous than usual?
Or are you, like me, just sticking with the precautionary principle and doing what’s worked?
I was about to place bets this was another 6 months off but I guess people are becoming disabled at alarming rates now. And about a thousand a week are still dying here in the US from the virus.
#CovidCautious#VictoriaBC group is hosting a #CovidSafe hangout at #VicWest Park (by the playground), on April 13, from 2pm-4pm.
Look for the folks wearing masks.
I'm swinging by there, after my para-dragonboating practice.
People keep shouting that if disabled people can’t cook or clean they should be institutionalized. Apparently accommodating us so we can live independent lives is angering others. Setting aside how awful many care homes are - do you realize there aren’t nearly enough beds?
I get that many ppl seem to want to completely disappear us from society. Seem to think we would be “better off” institutionalized even though many homes are dangerous places for disabled ppl. Even IF they were all sunshine & lollipops …do you think there’s enough of them?
Do you think they accept people of all disabilities? This idea that we should all have families or full time caregivers to support us is nonsense. It’s unrealistic and in many cases unnecessary. Many of us can & do learn to adapt on our own with part time help where available
The reality is we don’t have enough long term care beds to support everyone who’s chronically ill. Many places won’t take you until you’re a certain age. Many deny if you’re too unstable or don’t have rehabilitation goals. I know. I tried to find one & was repeatedly denied.
Stop assuming there’s some society wide program that places disabled people in homes that suit their unique circumstances. Many congregate settings are vectors for disease and neglect. We have to beg for access to places that often make us worse & reduce our quality of life
When you’re tempted to shout that we belong in a home - consider if it’s where YOU would want to be. Also look around - many countries are rapidly expanding their euthanasia programs to include disabled people with non terminal illnesses. Why do you think that is?
We are seeing rising disability numbers due to Covid - and the sad fact is we didn’t have enough supports for disabled people before the pandemic. We certainly can’t support the influx that’s currently occurring. So we are offering DEATH instead. Dead people cost less money.
I know folks are stuck in denial. They don’t want to accept the society wide risk associated with unmitigated COVID spread. But we are begging you to try. Try and think critically about WHY governments are expanding euthanasia programs.
Believe us when we tell you the dire lack of support available. We aren’t shouting about this because we want sympathy or enjoy complaining - we’re shouting because we can see the writing on the wall. We know our systems can’t support this much disability & people will suffer 1/2
#CovidConscious crowd: I’m sure I saw some discussion of techniques for stapling excess #respirator material together under chin to improve fit on small faces …
But I can’t find it now and I don’t want to just start stapling willy-nilly!
I'm very anxious, on top of a ton of dreadful feelings: some of my father's ashes are being buried tomorrow. I'd just like to hear from other covid cautious people that it's reasonable to leave the house in an N95. I know people do it, but the last time I went ANYWHERE was last year, for my dad's Celebration of Life and my grandmother's funeral. That's it. I don't go anywhere, and I'm full of fear.
So I just need to hear that people do it and are okay.
Definitely looking like my wife and I are the last mask holdouts for our entire extended family. I guess it had to happen sometime. Lonely. #Covid#COVIDcautious#LongCovid#CovidIsntOver
Any Covid cautious people have any tips or warnings about flying? I have to fly for the first time since this started and am nervous about it. I know most people won’t be masked, that I should wear an n95 or better, I’ll have to lower it at security, to never remove it otherwise, but wondering about things like running the air on the plane. Is it better to keep it off or on? Any other suggestions appreciated. #Covid#Covid19#CovidIsNotOver#COVIDcautious
I don’t know who needs to hear this - but it’s normal to be anxious if you’re at the ER. Especially during an airborne pandemic. HCW’s should not be slapping an anxiety label on patients who request they wear a mask.
A person sick enough to need the ER is too sick to handle Covid. Instead of judging them just put on a mask. It’s a kindness and it’ll protect you too!
Lovely mastodon savvy folk… I’ve been writing about #covid#disabilityrights and access to safe healthcare for the last number of months. Finally starting to publish & wondering best way to share on here. Is it still hashtags? I know there’s a wonderful #CovidCautious community here - are outside links ok? Thanks in advance!
I almost died out there yesterday because somebody needed chicken fingers RIGHT THE HELL NOW.
This big pickup crossed two travel lanes from the left then stopped sideways in front of me when they couldn't get into the right turn lane bc other cars were in it.
Glad my habits of careful driving and paying attention on the road paid off.
I drive with the assumption that everyone else is likely to do spectacularly stupid things, and, well, someone did.
Most of my social circle is online, so my orbit is pitched way to the #CovidCautious side. & fortunately there aren't strong countercurrents IRL around here. But I have gotten into some really uncomfortable conversations with a couple of close friends.
Mostly, though, they respect my boundaries. I just wish they'd practice some of their own.
The high cost of rapid #COVID tests in the U.S. forces bad choices even on people who would like to be #COVIDcautious.
Because I stockpiled eight tests per person per month for the entire period when they were covered by insurance, and also thanks to my wife's awesome job that keeps her well-supplied with tests, we have as many as we need.
1/?
I'm going down to #NYC tomorrow for my uncle's birthday and taking him to the #opera, opening night of La Forza del Destino at the #MetropolitanOpera. He's been a huge opera fan for most of his life, and he can't really get there on his own anymore, and I think this may be the first time he's going since the start of the pandemic, so this is a Big Deal. I am a bundle of nerves; there's so much that could go wrong! 1/6
To start, there's #COVID. I'm still being #CovidCautious so generally speaking I wouldn't go to the theatre on my own, but this is extraordinarily important to my uncle and who knows how much longer he'll be able to make it to the opera, so for him I will risk it. I'll wear a good N95 mask the whole time (which alas means no restaurants), and I'll use Enovid, and it'll probably be fine. But probably isn't definitely, and my uncle won't mask so I have to worry about him getting sick. 2/6
Our #COVIDcautious lifestyle has increasingly pushed us into social isolation. Which has resulted in a siege mentality of sorts, where it's the two of us against the rest of the world. Family and friends were lost to us due to the push towards the normalization of the ongoing pandemic by a neoliberal order under late stage capitalism. It individualized responsibility, which not only forced us deeper under siege, but also made us increasingly lonely.
We tried to reach out to other people in similar situations, but no one seemed interested to engage with us in a committed way. #MutualAid, #GermPods, #CommunalCare, #CirclesOfTrust, it all sounded good in theory. But they were not happening for us.
What can we do?
We would be really grateful for some leads.
The kind and thoughtful replies to my last “tired of talking about this shit” #Covid post inspired me to recount a dream I had the other night. It was a variation of the “caught indoors without a mask and feeling naked” dream that’s so common to us #CovidCautious types.
This dream was scarier. I was unmasked, and knew it. I’d given up, and was wondering how bad my first infection would be, any day now.
No fucking way that’s gonna happen. Might get it, but it will be despite an #N95 respirator.