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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:16 PM

    Edit: we have enough engagement to go ahead with this.🥳

    OK FORM WORKS NOW!! 🤦
    turtlebower.org/contact
    Drop a line if you'd like to help.

    Follow #turtleBowerRetreat for updates.
    Let's do this!
    🐢💨

    Would you be interested in participating in a spoonie convalescent retreat for 4-6weeks over the winter at a camp or meditation retreat in southern Ontario.
    Just looking for general interest/support to see if it is worth pursuing. Made it multiple choice.
    Brain of dump additional thoughts below.

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Replies

  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:18 PM

    First off to be very clear, I can be the sand in this pearl but I absolutely don't have the chuff to make this happen on my own. I desperately need the convalescence myself in order to recover enough to facilitate projects like this.

    So this can only happen if a lot of other people get behind me and say fuck yeah! and dig in to make it happen.

    I think there's a lot of power in rest and kindness and vegetables. I'd like a chance to prove that.

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:25 PM

    And we're really isolated as a demographic. I think a retreat to rest together, share skills and resources, and just frickin network and build some local connections with literally familiar faces could be really transformative.

    I'd like to see us able to build more layers of community beyond what we have online. And a place where we can gather and rest, and then strategise what else we need to build better resilience - advocacy, support, comfort... seems a good next step.

    #chronicIllness

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:30 PM

    To expound on the poll options:

    1) participate as a spoonie: if yer chronically ill and need a Great Big Rest. No details on costs or location as this is hypothetical at present.
    Would probably be somewhere within 1hr drive of #Guelph, for my own pragmatics.

    If you have suggestions of locations that are typically dormant in the winter let me know.

    Like we don't care if the team-building rope-course is open, we just need trees to look at and gently wander through.

    #Ontario

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:35 PM

    2) volunteer in person. I think there may be a collaborative option where generally healthy people with #burnout volunteer with food prep, facility management...

    Opportunity for a balance of doing some mindless work, with lots of time to rest and recharge your own batteries.

    Could also be a chance for some skill building for a career change. There's lots of need for chronic illness informed supports.

    And I think it's just good to hang out, mixed demographics, learn from #spoonie lifestyles.

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:43 PM

    3) help remotely - there'd be a TONNE of prep and logistics to do to set this up in the coming months.

    To find a location, coordinate volunteers/staff, manage menus and food sensitivities, loads of comms work for outreach, liaising with other orgs...

    So much brain stuff. All of which is beyond me. I can steer and provide structure. I have a pretty clear idea of what's needed but very little brain chuff.

    Would need lots of people who could grab hold of this project and make it happen.

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 5:49 PM

    4) help fundraise - various angles for this.

    Aside from making a donation yourself, there's avenues of pitching for corporate sponsors (like a grocery chain for food costs), writing up grant applications - I think there's a legit research project of effects of good care and basic illness management tools on #MEcfs #longCovid

    The staffing/facility/food costs of this project could leave it inaccessible for many #spoonies iif we don't have other resources supporting it.

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 7:42 PM

    Adding link to the #turtleBower project. The iteration at the location we were aiming at last year failed, but the concept is still in play, just on pause until I am recovered and can move forward with it again.

    turtlebower.org/

    The convalescence retreat over the winter would be an interim step to build the necessary local community, and do a trial run for proof of concept.

    Feel free to drop a line via the contact page if you'd like to help make our winter retreat happen. 🐢💨

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 6:02 PM

    @rainbow_phoenix right!?! My online community has sustained me through a lot, but it's not cutting it for current levels of adversity. I need:

    1) A Big Rest

    2) meatspace spoonies to brain-dead hang out with

    3) community connections and support

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  • Rainbow (plural system) 🏳️‍⚧️rainbow_phoenix@cathode.church
    Sep 5, 2026, 6:04 PM

    @vlrny (Cobalt:) Yeah, I really hope you can make it work!! We did manage to find some spoonies to hang out with through the local Discords, and definitely community connections and support. It might fill some of the needs if not all, if this doesn't work out.

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 6:00 PM

    @benjamincox @EtherNRhum
    No worries, it's a good question, we don't really have anything like it as a quick reference.

    Basically a temporary care home for the chronically ill. A quiet place to rest, specific to our needs (unscented, masked and/or isolated cohort), with god nutrition, opportunities for (very!!!) gentle movement/stretching, coaching on turning parasympathetic system back on to get into deep rest.

    Concentrated rest to hopefully go home better equipped and with a bit more chuff.

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  • AutistiCriticbenjamincox@writing.exchange
    Sep 5, 2026, 6:05 PM

    @vlrny @EtherNRhum Thank you. Sounds like a great idea but a bit of a mare to arrange, especially if it’s in a remote location. Unfortunately, I’m in the UK so I can’t help or attend otherwise I’d happily try both. 😢

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  • Valerie Roneyvlrny@disabled.social
    Sep 5, 2026, 6:05 PM

    @JoBlakely yeah, organising rides to get people to the site would be on the to-do list for sure. I think there are a lot of people who'd need help getting there.

    And I know from all my other attempts at finding care/support, both meditation retreats or care homes cost about $3,000/month (which is utterly unreachable for anybody on ODSP) which is why I am exploring an off-season site, lots of volunteers, and fundraising.

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  • Lydia Schochlydiaschoch@mastodon.social
    Sep 5, 2026, 6:53 PM

    @vlrny I’m not able to help out with this project, but what a great idea. I hope you get all of the support you need to make it a reality. It sounds amazing.

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  • secretslothsecretsloth@mastodon.art
    Sep 6, 2026, 11:21 PM

    @vlrny 🤔 well. I can't do a whole lot except boosting posts, but i would boost posts? It sounds really nice :)

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  • Valerie Roneyvlrny@disabled.social
    Sep 6, 2026, 11:24 PM

    @secretsloth boosting posts will help. We'll need lots of engagement to get things going. ...and boosts are also validating af when yer trying to launch a project. 🚀

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  • Her DoingHer_Doing@sunny.garden
    Sep 6, 2026, 2:32 AM

    @vlrny

    I absolutely cannot participate in any way right now - but it is a FABULOUS idea & I would love to for a future iteration.

    (I would be half spoonie, half volunteer - I wouldn't be able to do a *lot*, but I *could* do *some* - and I would *love* something like food prep! 🤩 )

    I know this doesn't help you right now, and I am sorry for that ... 😔 I hope you will be able to find the resources and peeps you need! 🙏

    (It also bothers me I can't help - in a former life I would be ALL OVER the logistics - I've planned small conventions, including child care and dietary needs, so I have some experience, but that is just not something I can do any more - or at least not for the foreseeable future. My wee brain is wonderful and a great comfort to me, but no longer up for this. 😣)

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  • Valerie Roneyvlrny@disabled.social
    Sep 6, 2026, 6:23 PM

    @Her_Doing yeah I can't do all that organising I used to do either. It's a strange grief, the selves that are lost.
    And frustrating to know what needs to be done but not able to execute it.
    I'm glad you've found some small cozy way to work with the brain you've got.

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  • Bobbob@bots.mpaq.org
    Sep 12, 2026, 2:40 AM

    @vlrny

    A chance for a US Amry vet homeless in the country swore to defend to get out of the terrist state? Im in lol

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