Kate Violette

@kateviolette.com

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Multipurpose nerd. Engineering manager currently waylaid by a complex illness. On a mission to watch every Katharine Hepburn movie.
🏳️‍🌈 they (🇬🇧), elle (🇫🇷)

Currently residing in Portland OR. Always a Mainer.

Blog at my username!

Posts Replies Media

got Edith Piaf stuck in my head today, that feels like a good sign? feels like I've got a little fight left in me ("La Foule" is what my brain dj is currently spinning, for those curious)

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Kate Violette

Reply to

emily fraser 🌿🐌✨

And yet, like Kyle says, you also have to hold the unassailable belief that you’ll get better. It’s not so much a hope or a desire because that opens you up to emotion which opens you up to the opposite of hope, i.e. fear. It’s just a truth that you’re always holding in the back of your mind.

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Kate Violette

Being extremely sick for an extremely long time means losing the capacity to desire, not out of depression but out of self preservation. Letting yourself emote about the future when there’s no end in sight to the suffering of the present = opening yourself up to a thousandfold more suffering

Simone asks what Dianna misses the most. Kyle: It's really difficult to put herself in that position of wanting, healing is not linear, tomorrow she could start getting better or worse. You have to just treat each day as it is. If she were better, she'd engage with all her friends, and go on a hike

bad news: ran out of a medication I need for making my weekly pill boxes good news: the package containing said medication just arrived like an hour ago!, my email says bad news: I have to walk across the property to fetch it in 95F weather 🥵 gonna boost my AC a little for when I get back...

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Kate Violette

today is my NINETEEN YEAR anniversary working at my local library In honor of that, I ask you to get a card to your local public library today! If you ALREADY have a card to your local public library, check out their digital resources! Their summer programs! And yeah, they have books too.

If you're curious in how I do my energy tracking--I have a short thread reply to this good question, with photos.

Ooh, I didn't know how you use pomodoros but I think I get it (never heard of using them this way) Do you use any tools/apps to count your pomodoros?

As someone who lives right on the border of severe ME/CFS (I can putter around my house a bit, but not much more than that--leaving the house for an IRL appt is an all-day expense) I think it's helpful to explain that: some tasks are always costly, some are "free", others' cost depends on the day.

2 - live posting 3 - making meds boxes 2 - dishes, laundry, tidy (so tomorrow buddy can help with further neglected tasks I can't do myself even on good days) 1 - write some neglected emails to friends/fam 1 - if I really have 9 in the the tank today: watch my weekly Katharine Hepburn movie, a treat

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Kate Violette

The Stockdale Paradox has been helpful for me as well. Stockdale used his study of Stoicism to survive in prison, specifically Epictetus if I remember correctly. Here’s how #Stoicism has helped me cope with #MECFS classicalwisdom.com/philosophy/s...

Kyle mentions a mental framework that's been helpful for them: The Stocktail (sp?) Paradox. Military people who'd been prisoners of war, how they managed. You have to hold two things in your mind at the same time:

When Illness Becomes the Way: Stoicism as a Way through Chronic Illness and Disabilityclassicalwisdom.com by Lia Pas What happens to each of us is ordered. It furthers our destiny. Marcus Aurelius[1] We never know when our lives might be changed suddenly and irrevocably. 2015 was one of the m...

A whole lot of people need to internalize this ASAP when talking to their sick friends/acquaintances:

(again) Kyle (but direct quote this time): "Because of the stakes here, you can't recommend anything unless you know how dangerous it is to try things."

Oh and I slightly misspoke -- there will also be live fielding of questions from a few hosts in-between the recording interviews!

Hey folks! Diana the Physics Girl, who's been ill with severe Long COVID and ME/CFS for a couple years now, is doing an all-day livestream of what her life is like, with really interesting pre-recorded interviews playing alongside! www.youtube.com/live/v8HWt9g...

Physics Girl LIVE with long Covidwww.youtube.com Dianna is Live streaming a day in her life as someone suffering from long COVID and ME/CFS. The purpose of the Livestream is to raise money and awareness for...

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Kate Violette

Truly. One of my friends supports me with $5 a month, and that seems like not much but it's dependable and clearly defined and not only is it tangibly helpful, it's a monthly reminder of care. It helps physically AND emotionally. $5 doesn't seem like much, but it's bagels for a week.

Small, clearly defined, dependably recurring offers of help: worth their weight in gold. (Parting thought: sometimes trying to get well is discouraging simply because illness is discouraging. Sometimes bc being the only person rooting for you to get better is discouraging. And sometimes--

As someone who doesn't have anyone helping with any of this, yeah. I don't get to just focus on being a patient and doing things that may get me better. I have to manage several homecare people and assistants myself, I'm the only person providing a roof over my head and running the household, etc.

I think the thing that makes me angry, perpetually Is that yes, long COVID and ME and all these other chronic illnesses are devastating and we don't know how to treat them But adequate housing and support for things like bathing and ordering groceries can 100% help

I'm in a decently bad ME/CFS crash today thanks to all the bullshit fireworks from the past six days (+ some other unsettling things from yesterday). Friend suggested perhaps next time I should go somewhere it's more quiet. I reply I tried to find someone to do that with me this year and couldn't.

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Kate Violette

Reply to

Kate Violette

Even those who are against fireworks mostly mention animals and rarely vets with ptsd. No other people or disabilities. When it comes to fireworks people are somehow even worse than normal at acknowledging disabilities beyond what they think they are familiar with. And at admitting harm.

I have a small ativan rx that is useful for staving off ME/CFS crashes when taken after a day of overexertion or unexpected sleeplessness, things like that. I really don't need much (0.125-0.25mg per dose, smallest tablets are 0.5 mg), and only need it infrequently, but the fireworks for 6 nights--

Comparison testing ear plugs + shooting earmuffs vs ear plugs + nice Bose noise-cancelling headphones Stay tuned for the review before I make my decision on what to wear to sleep

Ok I am really glad I ordered those shooting earmuffs a couple days ago If I were a betting person*, at least one person is losing a hand in my neighborhood tonight. It's that bad. * who am I kidding, I love betting

Does anyone know of a service that will manage your postal mail for you and just send you the important stuff? (And ideally shred the rest?)

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Kate Violette

incidentally I am an emergency physician and I use a walker

IMO this is a straight-up ageist and ableist image, no?

Having the most intensely shit day here and I wish so much I was physically well enough to go live in a cabin in the woods for three months and speak to pretty much no one.

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Kate Violette

Reply to

alisonborealis (she/her)

Debate pushing through anyway because when ever is the right time?? Know in your heart that to do so would be enormously detrimental to long-term recovery goals. Do what you can when you can. Try not to feel bad about it. Try to be more honest with people about it.

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Kate Violette

Chronic illness life: Have a little sulk as you organize all the things you don't have the energy to deal with. Spend your morning tidying so you can effectively vacuum. Run out of energy to vacuum. Spend a couple hours breathing, trying to rest and regain enough steam to clean more.

IT IS 1:28 IN THE AFTERNOON IT IS BRIGHT DAYLIGHT OUTSIDE WHY ARE PEOPLE SETTING OFF FIREWORKS (practicing for a bigger show tonight in someone's backyard? I don't know and don't care.) I AM SO SICK OF THIS

Fifth night in a row of fireworks in my neighborhood I truly despise my country

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Kate Violette

Having looked at the details: Decatur, Georgia, you’re up right now, they are actively recruiting there! Mineola, New York, you’re on deck, they’ve got you listed but flagged as ‘not yet recruiting’. The intranasals look to be our best hope(s) for a sterilising covid vaccine, so this is important!

Want to sign up to participate in the clinical trial for an intranasal COVID vaccine? They're taking 60 volunteers who have had at least one dose of vaccine. They're recruiting both people who've had COVID & people who haven't. Go here in for the details: www.clinicaltrials.gov/study/NCT064...

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Kate Violette

Reply to

When I was mostly bedbound and in pain 24/7, it was disabled folks online who bought me stuff from my wishlist that helped me stay alive And so many folks sent a note saying things I'd written had helped *them* stay alive, suffer less, or finally access a formal diagnosis Interdependence

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Kate Violette

For a lot of Disabled people, posting-as-praxis is what we can do. I don't have a lot of respect for people who want to denigrate this specific part of community participation.

For people who were waiting for the end of the thread to read, it's fully posted now! :) Enjoy my silly little graphs, hope it helps folks among many different political stances.

Ground rules: - I'm only writing this thread to help illustrate how people are talking past each other. - I'm not looking to argue for or against any way of voting this fall, and if anyone starts those arguments in my replies, they'll get blocked. This is a "how we're misusing words" thread: