BoloSassyandMe
Porquerias | 1312 | 🏴🌵 G@MNow that people are realizing that Long COVID is real, I see a disturbing trend that seeks to minimize just how common it is and restrict the definition of long COVID to the most severe cases. Nobody has to be "bedridden" or "housebound" to be experiencing the effects of long COVID or be disabled by it. I literally am not as able as I used to be, that's me being disabled by long COVID.
If y'all really want to know how it affects me, like the asshole who got me sick by coughing at me unmasked in class did, that's kinda not your business. If it was your business I would tell you that I used to walk 8-12 miles a day for work, while lifting, bending, and stooping. It was an 8 hour workout daily. When I got COVID I rested for as long as I could, stayed out for two weeks, then came back half as fast. My productivity was measured in units per labor hour. It was halved by COVID.
When I got shit canned I am pretty sure it was just an excuse to fire me for being disabled by the virus I had effectively no protection from given that the CDC told us essential workers to wear cloth masks and none of the customers would even wear them. Ever since it's gotten worse, like just doing the dishes and laundry and making food, or like vacuuming my studio apartment, takes me the fuck out. My heart randomly beats too fast and makes me feel like I am going to pass out.
Broken glass/razor lungs that prevent me from even jogging means that even the most low impact exercise is a challenge. It's especially frustrating because doctors don't give a shit. They all tell me "you look healthy" and then say I could lose some weight. Nobody will even give me the tests I need to prove that I have this shit.
But it's not going away. Everyone told me it would get better in a year. I got my first confirmed positive test in January '22 (I suspect I had COVID before that about 3 times) and ever since I have been completely fucked up like this, and my brain has not been the same. I don't even know the extent of the neurodegeneration but I know it has happened. Learning is hard, learning while affected by LC is way harder. I can barely focus on anything, and I have always been good at that.
So like just know that your case of long COVID is real and valid, even if it doesn't mean that you are "bedridden" or "housebound". I have nothing but solidarity for those who have worse LC, we are fighting the same fight. But ableist assholes are going to slice and dice the community and try to divide us, that needs to be fought. We are all affected by long COVID, there are hundreds of millions of us.
It's like not normal for my partner and I to just be standing or sitting and talking and suddenly feel like we have to stop talking because our heart is beating too fast and you feel like you're going to pass out if you don't take it easy. I don't know how things are ever going to get better.
If you read this thread and come away thinking that I am "using long COVID as an excuse" you can go fuck yourself btw
Raven Onthill@galletasalada the odds of some sort of long-term consequence of covid infection is are about 1 in 10; some studies make it higher. I don't know where you are but if you have access to care, look around for a program that's trying to treat long covid you may get some help there.
@ravenonthill I have looked into it and I think the university of Washington would be my best bet but I am not even near their clinics so it’s something to work on. I appreciate all the advice that I can share with others but I have been looking for solutions for a while and haven’t found anything, hence the despair.
@galletasalada I'm sorry. Unfortunately covid is a new disease and that means we don't yet understand treatment.🙁
Just standing in my kitchen typing this post made me feel like I need to sit down lol
Lord KelvinI've never gotten Covid, but I've still been disabled by it.
I'm no longer able to tolerate their bullshit.
Hegelian Princess@galletasalada yeah, like, I do not have a particularly bad case
I also still got wiped out by having to climb five flights of stairs the other week
@julieofthespirits that's a substantial amount of stairs, but yes that's what I'm talking about. When I sought healthcare the other day the nurses were walking like double speed compared to what I was capable of without panting and wheezing, I have to regulate so much to not overdo it.
@galletasalada yeah, but like, in 2019 I was living on the sixth floor of a building without an elevator, so it was an amount of stairs I used to be able to climb several times a day
@julieofthespirits I hear you. Walks that were nothing for me now take planning and consideration to make it happen and I drive a lot more to save spoons even to close places
Omega_Scribet (has moved)@galletasalada I am sorry you are in such a terrible condition.😞
I myself never had #POTS but I've read that people who do have it, and have that same tendency of passing out when getting up and/or do an activity, can avoid passing out by turning on this 👇 free app the moment they get up/do something.
The app seems to be quite unique, well, so they say, 'there's nothing that works so well'.
You do need an iPhone and an Apple watch.
@Omega_Scribet We really need Free and Open Source health tracking tech because while I own some Apple products I do not own those and it would be about a $1500USD investment to get them
@galletasalada I agree, health tracking apps should be free and open source.
Carlota Lacumi Appreciator@FarmingWarMech yeah it’s been this way for over a year now and it’s like I wonder how long I will live but I’m just trying to get blood tests and stuff done to figure out my health status while I still have Medicaid
Lewis@galletasalada Sorry to hear about this.
I have had problems getting tests too.
Keep changing doctors or pushing them for help.
It is demoralising. I have got to the point where I don't expect anything much of them as a way of coping, but keep trying.
All best wishes for you both.
I have had problems getting tests too.
Keep changing doctors or pushing them for help.
It is demoralising. I have got to the point where I don't expect anything much of them as a way of coping, but keep trying.
All best wishes for you both.
@LewisHarrington thanks. Any advice for people on Medicaid who don't have a choice of doctor?
Ian Molton@LewisHarrington @galletasalada Move to a country with socialized healthcare :(
@spyro @LewisHarrington immigration regimes in those countries usually explicitly exclude disabled people but thanks for the tip
@LewisHarrington @galletasalada To be clear, the :( was meant to show empathy for that
Kacey@spyro @LewisHarrington @galletasalada I thought I lived in one…
Not so sure any more. Do you fancy Sweden?
@kacey @spyro @LewisHarrington my ancestors fucked off from Malmo to here so it would be funny if I went back
@galletasalada
Sorry, I know America is hard where medical help is concerned.
I did not realise this was the case in the US.
Sorry, I know America is hard where medical help is concerned.
I did not realise this was the case in the US.
@LewisHarrington in urban areas that have a lot of providers that take Medicaid reimbursement it's not the case, but for some of us our options are very limited indeed.
@galletasalada
To be honest the doctors are very little help in our system.
I've been ill for 2yrs+ since infection.
They are under pressure and not able. or willing in some cases, to help.
There is a lot of research being done though. Hopefully these problems will be more understood as they get more information.
Personally I have had a lot of problems and been treated quite badly. The doctors have done no research and dismiss anything they possibly can as 'psychological'.
Jeffrey J. Dean
Kate Watson
Halla Rempt@galletasalada If your wife tells you, go home, go to bed, not just during a Sunday Liturgy, but also in the middle of TTRPG or dinner -- yeah, something is up.
And sometimes it's better, sometimes it's worse, sometimes it just feels like a worsening of things one knew fore, and sometimes it feels frighteningly new.
But one thing is sure, it sucks.
Just a Pumpkin@galletasalada I've had ME for close to 20 years, with a host of other diagnoses on the side. It's been very disturbing watching the rise in long covid, seeing how much overlap there is, and the broad public indifference. It's hard to watch people who have no idea of the risk they are taking when I live with very similar consequences every day
I hate this. It sucks. I'm sorry you and so many others are in this position
signerinkbeast@redgranola @galletasalada Ditto. I live with TBI and so much of what I live with as a consequence of two of them is very similar to what a lot of people with Long Covid experience. It's wild to see callous disregard for something that is seriously disabling. I see it as people being unable to deal with reality, as it's the first big trauma a lot of the general population ever experienced (even for some old folks), so they're in hardcore denial to cope. And that hurts us all collectively.
a1@galletasalada plus I am seeing “scientific” articles popping up that covers BS such as “Long Vax”. I don’t understand what’s motivating these people. Just read that London expects a measles outbreak due to folks not having their kids inoculated.
Billy SmithIn the Weimar Republic, the "Useless Eaters" were mostly people who had became disabled from the effects of the chemical weapons during WW1.
Melroy van den Berg@galletasalada I'm no doctor. And indeed doctors sucks. They barely know anything about our bodies anyway.
I have severe tinnitus and hyperacusis. Nothing they can do about it. 'just live with it'.
My advise is to try some special vitamin /mineral treatment therapy directly via your veins. I'm not kidding..!
@melroy I'm sorry but too many people have suggested bioavailabile vitamins instead of actual medical care so I know this is meant well but I gotta say that yes I am taking vitamins.
@galletasalada did you tried Infusion treatment? It's not just taking vitamins.
Eleanor@galletasalada Agree - with sympathy and solidarity.
I do think the different subtypes badly need to be clarified, because that's going to be crucial for developing treatments. But that's not in any way an excuse for people to divide us into 'severe' and 'trivial'.
@galletasalada Fibro here...
Marguerite Dabaie@galletasalada Yep, you're right. I function but I'm not the same that I was.