Brianne Benness

@bennessb

I share folks' stories about chronic illness on No End In Sight (podcast & Medium collection) 👇 Bad tv watcher 📺 Occasional writer/editor/speaker ✒️ She/her

Western Mass
Vrijeme pridruživanja: ožujak 2012.

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  1. Prikvačeni tweet
    27. lis 2019.

    Feels like time for a new intro thread! First, if you're here because you're chronically ill or because you've been experiencing chronic health issues, then I wrote you this open letter. I hope it resonates.

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  2. proslijedio/la je Tweet
    prije 3 minute
    Odgovor korisniku/ci

    When meeting new people and if we exchange numbers for future or make plans I preface with “I never know how I will feel so please don’t think I’m a flake if I need to cancel at the last minute.” It’s humbling but I’ve gotten used to it. Friends understand.

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  3. prije 58 minuta

    The continuing enthusiastic tv coverage of no caucus results is really what democracy is all about.

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  4. proslijedio/la je Tweet

    Slight tangent - but does anyone else define their impairment like this? After much internal debate about what number to settle on, I now do all the time. I say "I can now do about 10 to 20% of what I used to do in a day."

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  5. prije 2 sata

    And I often prioritize my writing or my podcast over correspondence, because that stuff keeps my mental health in check. I couldn't be a good friend if I let that stuff go. It's just a really difficult double bind. I miss showing up for people. That's all. 5/5

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  6. prije 2 sata

    And I still want to be somebody my friends could call in a crisis. But I keep my ringer turned off all the time. I'm a terrible person to rely on in a crisis. I have about half as many functional hours as I did 5 years ago. My life is half the pace it used to be. 4/

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  7. prije 2 sata

    But there's this other thing where I just can't cognitively keep in touch or reach out the way I used to. Most emails sit in my inbox at least a week before I have the juice to respond. It regularly takes me a few days to process text messages. Unplanned calls are draining. 3/

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  8. prije 2 sata

    Because it's one thing to talk about how other people don't always know how to show up for us. That's real and painful and adjecent to what I'm talking about. And there are the boundaries that I need to enforce now to stay on an even keel. They put up more distance, fine. 2/

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  9. prije 2 sata

    I would love it if we could talk more about how chronic illness makes it hard to show up for other people. I am not the kind of friend I used to be and whenever I really think about that I feel sad and guilty. 1/

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  10. prije 2 sata

    Okay but what if there are way more people out there living with undiagnosed chronic health conditions then there are hypochondriacs (whatever that means).

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  11. proslijedio/la je Tweet
    3. velj

    Okay so I am working on a project that I would really really love your help with. I'm making a video adaptation of Dear Problem Patients (linked), and if this piece resonates with you then I would love to include your voice in the video. 1/

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  12. prije 15 sati

    We are rewatching Bojack Horseman and I didn't realize Diane is 34 in S1. For some reason I definitely thought she was younger than that.

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  13. prije 16 sati

    It's weird how there is an entire subgenre of influencers who give life advice that is incidentally also branding advice.

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  14. proslijedio/la je Tweet
    prije 19 sati
    Odgovor korisnicima

    Yes. To me, health is a tool. An invaluable tool, yes, but still just a tool to use in meeting your goals. To the purveyors of wellness, health is the goal. All too often, the only goal.

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  15. prije 19 sati

    The next step in TEDx prep is figuring out what to do with my hands, since I've realized that I only know about three gestures and my instinct is to just cycle through them indefinitely.

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  16. prije 21 sat

    also there should definitely be something in there about how untenable the current situation feels to you. Sometimes it's like "I physically can't shower and that's just my life now" whereas sometimes it's like "ice cream makes me itchy and I am desperate to change that."

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  17. prije 21 sat

    Also like, I find myself longing for a formula to share with people who send me advice or health info. something like: (desire to try new intervention) = (current available energy & money) x (perceived success of all past interventions) / (length of time you've been sick)

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  18. proslijedio/la je Tweet
    prije 24 sata

    Two hours until begins! In honor of Headache on the Hill (), we‘ll talk advocacy with Ellie Donner-Klein ()! Questions are posted here:

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  19. proslijedio/la je Tweet
    prije 22 sata
    Odgovor korisnicima

    I used DNRS per suggestion of my doctor for MCAS fragrance hypersensitivity. It helped. But I switched over to using Emotional Brain Training as it has higher standards for support providers. It isn’t condition focused like DNRS, but helps my MCAS a lot.

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  20. prije 22 sata

    Now I'm just imagining a classification system for health advice that breaks down into categories like: - trauma healing - cutting-edge pharmaceuticals - nutrition optimization - ancient healing techniques - more exercise! - something about mind over matter What am I missing?

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  21. prije 24 sata

    I've probably asked this before, but still curious. Has anybody tried dynamic neural retraining for POTS etc? (How'd that go?) Nobody has ever mentioned it in an interview and so I have no idea what to say to healthy people who bring it up.

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