Not a small change, but for my diseased ass, and now the millions with sister-disease long covid, not being so f'n sick.
On all days, I am in pain, exhausted, and feel like I have food poisoning and the flu. Many days, I get myself fed and go to the bathroom—period. On a good day, I can add briefly getting out of the house, and do 90m of …
Not a small change, but for my diseased ass, and now the millions with sister-disease long covid, not being so f'n sick.
On all days, I am in pain, exhausted, and feel like I have food poisoning and the flu. Many days, I get myself fed and go to the bathroom—period. On a good day, I can add briefly getting out of the house, and do 90m of work or attend a telehealth appointment. On a great day, I can add a shower. On a stratospherically rare day, I can add in a hang, but often at huge cost.
The last time I hung out with my galpals I was crashed for a full 8 days—no ability to work, leave the house, and only got one or two showers in while in serious pain and duress.
For people like me, online community and Facebook becomes a lifeline—no one needs us to shower, leave our houses; no one is giving us COVID through the wifi.
We need research, awareness, treatments and dare I hope, cures.
Thank you for sharing these realities. I know it takes precious energy just to add it to this discussion!
It’s really easy to be down on online community when there’s a chance in hell of having anything else … but for a lot of us, it’s just not possible and you’re so right that it’s a lifeline.
I can relate. I have chronic migraine with constant sensory sensitivities. Even if I’m feeling well enough to leave my house, the public spaces that are available are inaccessible to me due to fluorescent lights, loud music, proximity to a busy street, and/or big crowds. And those are the barriers BEFORE factoring covid into it. I can’t get sicker. Chronic migraine made my life small and then covid came and made it even smaller.
My community is on facebook and twitter but those platforms suck. The loss of twitter as a public space right after losing IRL public spaces due to covid risk has been devastating.
Not a small change, but for my diseased ass, and now the millions with sister-disease long covid, not being so f'n sick.
On all days, I am in pain, exhausted, and feel like I have food poisoning and the flu. Many days, I get myself fed and go to the bathroom—period. On a good day, I can add briefly getting out of the house, and do 90m of work or attend a telehealth appointment. On a great day, I can add a shower. On a stratospherically rare day, I can add in a hang, but often at huge cost.
The last time I hung out with my galpals I was crashed for a full 8 days—no ability to work, leave the house, and only got one or two showers in while in serious pain and duress.
For people like me, online community and Facebook becomes a lifeline—no one needs us to shower, leave our houses; no one is giving us COVID through the wifi.
We need research, awareness, treatments and dare I hope, cures.
Thank you for sharing these realities. I know it takes precious energy just to add it to this discussion!
It’s really easy to be down on online community when there’s a chance in hell of having anything else … but for a lot of us, it’s just not possible and you’re so right that it’s a lifeline.
I can relate. I have chronic migraine with constant sensory sensitivities. Even if I’m feeling well enough to leave my house, the public spaces that are available are inaccessible to me due to fluorescent lights, loud music, proximity to a busy street, and/or big crowds. And those are the barriers BEFORE factoring covid into it. I can’t get sicker. Chronic migraine made my life small and then covid came and made it even smaller.
My community is on facebook and twitter but those platforms suck. The loss of twitter as a public space right after losing IRL public spaces due to covid risk has been devastating.