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JL
Joy Lives Here (day/dem/dares)
@joyliveshere.bsky.social
Disabled. Queer. Creator. Sr. NPComms Pro. Trying to help build the world I want to live in. People > Profit, Productivity, Property. Prickly when riled. Boston, MA Likes: collaboration, curiosity, compassion. Dislikes: competition, coercion, conformity.
124 followers239 following283 posts
JLjoyliveshere.bsky.social

Incidentally, executive function is also the reason I donā€™t own any stove top water kettles anymore. I decided it was too dangerous after the 2nd time I checked out long enough for all the water to boil away & the bottom to burn off. Executive disfunction makes so many things more difficult.

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JLjoyliveshere.bsky.social

If there is any specific moment that perfectly captures what executive function is to me, itā€™s the 1st time I found myself standing disoriented at the kitchen counter w/my pour-over filter ready to go & the electric kettle in my hand. Iā€™d checked out mid-task long enough the water was tepid.

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JLjoyliveshere.bsky.social

Please, just let me have one unremarkable year. Thatā€™s all. This year, my resolution is to find a way to live my life again rather than letting myself be subsumed into just trying to survive. And to spend some time taking pleasure in the company of people I love.

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JLjoyliveshere.bsky.social

I want balance, a chance to catch my breath, a safe, quiet, peaceful home where I can see to my own needs well enough to start feeling like a person again. Iā€™m so tired of living in limbo while the world changes around me into something terrifying and strange.

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JLjoyliveshere.bsky.social

On the plus side, if I do develop long COVID, Iā€™m already well prepared to handle pretty much anything it might throw at me!

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JLjoyliveshere.bsky.social

I suppose they naught be able to assess if I have long COVID if my next MRI turns up new central nervous system damage inconsistent with MS leisions. Demyelination is pretty distinctive on scans.

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JLjoyliveshere.bsky.social

MS absolutely does suck rocks. Itā€™s the worst superpower ever. I keep asking when I can apply for an upgrade to a cybernetic replacement body but so far no one has responded. šŸ¤£ Bodies are awful. But what can we do? Canā€™t live without them.

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JLjoyliveshere.bsky.social

Yeah, loss of smell isnā€™t common with MS but it can happen and my baseline fatigue/brain fog was already bad enough to keep me essentially home bound most of the time prior to my infection. Even with the acute infection, testing was the only reason I was sure it was COVID.

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JLjoyliveshere.bsky.social

MS includes such a broad range of dynamic symptoms that anything else going on might as well just be noise unless itā€™s definitively attributable to something else, explicitly dxā€™d through tests, or extraordinarily severe. My MS baseline overlaps with pretty much every other known chronic illness.

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JLjoyliveshere.bsky.social

I should have clarified. Iā€™m not sure if I have long COVID. Iā€™ve been only infected once so far. Itā€™s hard for me to tell because my baseline is already totally off kilter from Multiple Sclerosis (dx 2012) and every single COVID/Long COVID symptom could also be attributed to an MS flare.

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JL
Joy Lives Here (day/dem/dares)
@joyliveshere.bsky.social
Disabled. Queer. Creator. Sr. NPComms Pro. Trying to help build the world I want to live in. People > Profit, Productivity, Property. Prickly when riled. Boston, MA Likes: collaboration, curiosity, compassion. Dislikes: competition, coercion, conformity.
124 followers239 following283 posts