I went thrifting with the kids a couple of days ago and I'm still in so much pain it's making me teary. I don't cry easy. My therapist scolds me about it. 5 hours of shopping with two well behaved kids and I sat down through most of it. I could really use a wheelchair, but I can’t afford one. It would have to be electric, because my EDS is degenerative.
Guess I'm stuck in bed again.
I really wish people would understand that I would give so much to be able to just... live. Even the limited existence I had before covid was better than it is now. I can't go to a movie, or the zoo, or the aquarium. I leave the house for supplies and medical care. That is literally it. I risk my immunocompromised life every time I leave the house because people won't mask. I risk my minor children's lives and my partner's too. We're all immunocompromised.
I used to hike, ride horses, dance, bike, practice 3 types of martial arts.
Then I caught swine flu and my body gave up. I was diagnosed with me/cfs (which is now usually considered a post viral illness, meaning you got sick with a virus and never got better).
Then 3 years ago, I caught version 6 of the first wave of covid. I barely survived, but I never got better.
I honestly can't imagine how people can be so blasé about viruses. They can absolutely destroy your life. They've destroyed mine. I was healthy! I exercised and ate well! I was vaccinated! (Antivaxxers fuck off. I have science degrees, you're really badly misinformed.) I did everything right and it still took me down.
There's nothing you can do behavior wise that will guard you from viruses except masking, vaccinations, and social distancing. Setting up air cleaning options helps too, but since we can't even get people to mask, I'm not holding my breath on that one. (Har, har, I'm hilarious.) Vaccinations are imperative, but they don't do anything for transmission. They exist so that if you do get it, you have a better chance of survival.
And humanity could have defeated this illness 3 years ago. Except because selfish people wanted their 'normal' back... we didn't. PSA? Your 'normal' sucked a lot for disabled people already. It's worse now.
I do the best I can, but it has robbed me of so much. My scientific career, my ability to make a living that doesn't mean just scraping by well under the poverty line.
I can't hike anymore, or bike, the brain knowledge of my decades in martial arts and dance is still there, but I probably couldn't take a hit anymore. Being around horses again is an impossible dream.
Hell, just getting out of bed some days is an impossible dream.
I have nightmares of being without a mask, and people walk around bare faced.
I fucking guarantee there isn't a 'fun' thing on this planet that is worth living like I do.
The worst isn't when the virus kills you, it's when you survive it and have so little ability left.
And more people survive SC19 than die from it. They survive, but millions of people are already disabled from it and the numbers rise every day.
How are people not fucking terrified? How?
