Invisiblyillin

@Invisiblyillin@med-mastodon.com

I’m an ordinary girl in an extraordinarily unwell body. I love plants (especially native plant agriculture), my dogs and all varieties of other critters, all things science, creative arts, and food! I’m particularly passionate these days about supporting, and advocating for, people with Long Covid and other invisible illnesses. Because being sick sucks, but being sick and disbelieved sucks a whole lot worse!

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Invisiblyillin, to animals

Little man (Aka Julius the Great….Dane) had an ultrasound today. He got fidgety so they gave him a touch of sedation. Dude came to singing Irish drinking ditties off key and cursing the entire staff, their ancestors, and the generations to come. Then he fell asleep like this on the way home.
I demand better medication at my next procedure now. 😆

It’s somewhere!

,

Brad, to random

March 20, 2024. I’ve been reading anecdotal Covid related posts since 2020 and they don’t seem to be getting any milder or better. I can’t imagine where we’ll be in just a few years from now. 🤷‍♂️ It’s a slow outta-control COVID train wreck that no one wants to talk about…

Invisiblyillin,

@Brad
This is horrifyingly true. A LOT of us (Long Haulers) are unable to work, care for ourselves, or function in anything close to our former capacity.
And then we are charged with managing our own care, finding some way to pay for the extra expenses while unable to work, and continuing all the tasks needed for normal daily life (cooking, cleaning, shopping, etc.) during our illness.
It is a public health disaster. With basically zero precautions in place, there is no end in sight.

Invisiblyillin, to random

5 completely BS, fake reasons for masking that I’ve told strangers this week. All were better received & more socially acceptable than the real reason of wanting to protect myself and others from Covid.

  1. I didn’t have time to do my makeup today.
  2. I forgot to brush my teeth
  3. Acne outbreak I’m trying to hide
  4. I’m trying to stop smoking (was actually told “Great idea!”)
    And 5. I’m still numb from the dentist and this catches the drool.

Seriously folks. Good grief.

,

Invisiblyillin, to art

It’s too cold to be in the garden, so I did a thing! An Origami lantern from reclaimed books as a gift for my friend 😁
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Invisiblyillin, to disability

I got an official diagnosis yesterday, at the age of 52, for a genetic disease that I’ve been manifesting symptoms of since the age of 5.

I have been ignored and gaslit by the medical community for 47 years.
It only took one doctor to say “your body isn’t responding the way I’d expect, let’s find out why” to get the process started and I am so very grateful for that doctor! But it also took more than 40 years to find that doctor and that’s insane

#chronicillness, #disability, #EDS

Invisiblyillin,

@msquebanh
Thank you so much. We all deserve better than that, really.
And I’m so sorry that your friend had to fight so hard for so long to be heard as well. It’s inexcusable. I hope she’s getting proper treatment now.

rebeccajtiffany, to random

It's really amazing having been reading forum posts for a few years now. The same stories over & over again. Loss of jobs, partners & family abandoning them, shaming them for being sick. Many consider suicide. Profound clinical symptoms & little/no help from doctors, + medical gaslighting

Invisiblyillin,

@rebeccajtiffany
As a person with Long Covid, I find it amazing how many people still join our forums daily.
I’ve been saying since the beginning that this is a humanitarian disaster, and gotten more than my fair share of pushback on it. It’s true though.
We are desperately trying our best to warn the rest of the world that our fate could easily be theirs, but most just don’t seem to care.

halcionandon, to mecfs
@halcionandon@disabled.social avatar

Afraid being forced into long trip outside will worsen my health until it kills me.

No carer.

Nobody is helping.

@mecfs
@longcovid @chronicpain

Invisiblyillin,

@halcionandon @mecfs @longcovid @chronicpain

It’s unconscionable. I’m so sorry.

GottaLaff, to random
@GottaLaff@mastodon.social avatar

Covfefe!

Via Kyle Griffin:

Donald just claimed that Sidney was not his attorney and "never was."

And yet, Powell was in the Oval Office with him in December 2020 and, at that meeting, Trump considered appointing Powell special counsel to oversee bogus voter fraud claims.

Invisiblyillin,

@GottaLaff , I know things can get twisted about once the media gets hold of them, so I do try to give everyone the benefit of the doubt. Regrettably , the former President (and seemingly those on his “team” as well) just inspires so much doubt and has provided very little benefit. Blech.

Invisiblyillin,

@GottaLaff
There is definitely a vocal, dedicated following that I find it beneficial to know about and avoid. But, yeh, other than that….. not so much

Invisiblyillin, to mecfs

Can we normalize asking something other than “So what do you do” when meeting people? Because my current answer of “struggling to manage the demands of chronic illness while maintaining a semi functional, semi clean household” gets awkward.
, , , ,

seachanger, to random
@seachanger@alaskan.social avatar

I think we’ve reached the limits of consoling with “I’m so sorry you got Covid, hope your case is mild and quick”

a lot of cases will not be mild or quick 🤷🏻‍♀️

The sympathy I want to hear is “I’m so sorry you got Covid, I’m going to wear a mask more often in public spaces and try to talk to my work/school about improving indoor air quality, the more people who advocate for system shift, the sooner we decrease how many folks are risking injury and death from this preventable disease”

Invisiblyillin,

@seachanger
I wish I could say I want what you want. The reality is that I’m tired of banging my head against a brick wall. I got Long Covid in the first wave and have been masking in public 💯 ever since. Begging for others to help protect me from reinfection so that I can go to appointments or grocery shopping without risking my life. Waiting for people to give a 💩 as they see increasing numbers of those close to them fall ill.
Those who don’t care at this point will likely never care. 😔

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