I just want to wake up one morning and actually feel rested. Like my body actually did what sleep is supposed to do. Like I could get up and exist without pushing through exhaustion before the day even starts. #longcovid #mecfs
16.03.2025 17:05 โ ๐ 13 ๐ 2 ๐ฌ 0 ๐ 0
How did you spend Long Covid Awareness Day, did you know it was happening?
As folk with energy limiting illnesses we're all impacted by how society & the medical & research fields treat each other's illnesses ๐
We're stronger together!
#mecfs #longcovid #pots #chronicillness
16.03.2025 18:26 โ ๐ 2 ๐ 0 ๐ฌ 0 ๐ 0
@batemanhornecenter.bsky.social
We're very happy to see you guys here on Bluesky!
11.03.2025 21:41 โ ๐ 2 ๐ 0 ๐ฌ 0 ๐ 0
Yikes, what a week over in this part of me/cfs land!
To make up for it, let's do two questions!
What's your favorite thing about using the #visbleapp?
What do you wish they'd add?
11.03.2025 21:33 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0
Selfcare is core to #pacing & it's always valuable to hear from people living it rather than wearing a lab coat and preaching it. We all have our own paths, but we can also always learn from each other's experiences ๐
01.03.2025 23:11 โ ๐ 1 ๐ 1 ๐ฌ 1 ๐ 0
Did you know that Visible has a blog which covers new research around energy limiting conditions & that's available through the app via the community tab?
If so, how do you like it and how do you feel about the use of ads?
#visbleapp
01.03.2025 23:01 โ ๐ 3 ๐ 0 ๐ฌ 0 ๐ 0
[Updated] "My paternal #grandmother was a professional seamstress & would hand sew..dresses for us when we were children.. #embroidery work can be lots of fun, & is also a #meditative experience as you focus and repeat the stitches": https://buff.ly/3T0DfxS #surgery #MondayBlogs
24.02.2025 15:30 โ ๐ 12 ๐ 4 ๐ฌ 2 ๐ 0
Has anyone gotten the 2.0 armband &, if so, do you think it was worth it?
24.02.2025 23:11 โ ๐ 2 ๐ 0 ๐ฌ 3 ๐ 0
Questions are probably going to be weekly now, but with all the usual caveats we're all used to giving.
Please feel free to bump old posts, tag us when you want to interact with folk who truly get it, or when you're having a good moment/hour/day!
24.02.2025 23:10 โ ๐ 3 ๐ 0 ๐ฌ 0 ๐ 0
I love that! Let me find the password and I'll message you when I do ๐
18.02.2025 21:21 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
@belasco.bsky.social?
16.02.2025 22:03 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0
Sooooooo I keep hoping I'll have the spoons to do the daily questions etc. But I'm so tired! Does anyone want to take over this account to do it? #visibleapp #visibleappchat
16.02.2025 22:03 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0
Q6 what are some quiet activities that help you when you need to reduce your pace points for the day? #visibleappchat #visibleapp
13.02.2025 16:01 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0
Q5 do you have ideas for daily-ish questions for #visibleappchat? What do you think of people volunteering for a certain day of the week (or other schedule) to come up with one? #visibleapp
13.02.2025 15:59 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
Q4 how did you hear about #visibleapp? What made you decide to try it, if you have?
#visibleappchat #visibleapp #pacing #mecfs #longcovid #pots #spoonie #chronicillness #chroniclife
13.02.2025 03:03 โ ๐ 2 ๐ 0 ๐ฌ 2 ๐ 0
Q3 when your heart rate is up, is there anything that helps bring it down quickly? Or at least reduces it a bit?
#visibleappchat #visibleapp #mecfs #longcovid #pots #spoonie #chronicillness #chroniclife
07.02.2025 17:58 โ ๐ 3 ๐ 0 ๐ฌ 3 ๐ 0
Buy audiobooks & support local bookstores
Libro.fm makes it possible for you to buy audiobooks directly through local bookstores.
Many new friends here (thanks @maggietokudahall.bsky.social โค๏ธ) so here's an intro!
We are an alternative to Amazon-owned Audible that shares all profits with indie bookshops across the globe. Plus:
โค๏ธEmployee-owned Social Purpose Corporation
๐ซBooksellers drive our recommendationsโnot algos!
29.01.2025 20:46 โ ๐ 183 ๐ 49 ๐ฌ 6 ๐ 6
LA WILDFIRES: EMERGENCY GRANTS. Donate $15 or more to the We Need Diverse Books Emergency Grant Fund and receive a free Libro.fm audiobook credit.
@weneeddiversebooks.bsky.social is providing emergency grants to BIPOC, LGBTQIA+, &/or disabled authors, illustrators, educators, & more in LA impacted by the wildfires โค๏ธ
From now through February, donate $15 or more to their Emergency Grants and youโll receive a free Libro.fm audiobook credit.
30.01.2025 17:21 โ ๐ 106 ๐ 59 ๐ฌ 1 ๐ 5
We're a registered Social Purpose Corporation, but what does that mean?
We pursue social goals, even if those goals conflict with our financial interests. This is because we deeply care about supporting indie bookshops & local communities.
We hope you'll join us for your audiobook listening โค๏ธ
04.02.2025 21:08 โ ๐ 1390 ๐ 148 ๐ฌ 27 ๐ 24
An animated heart wears headphones and is blushing. Reads: For the love of audiobooks reading challenge: Read 10+ hours of audiobooks between February 5-14 and youโll earn a free Libro.fm audiobook credit!
How the challenge works: Read 10+ hours on audio: While you can use any audiobook listening app, we love Libro.fm (hi!) and libraries. Submit a form by Feb 19: Head to the link in bio to access the form. Make sure to submit by 5 PM PT on February 19. The honor system: Youโll be asked to cross your heart that the information is true and correct. Earn your credit: Credits will be emailed by March 1 from hello@libro.fm.
Need audiobooks to get started? New monthly members that sign up with code FORTHELOVE will get three audiobooks for the price of one, all in support of your bookshop.
For the love of audiobooks...it's time for a reading challenge! ๐โ
โ
Between now and 2/15, if you read 10+ hours on audio, you'll earn a free Libro.fm audiobook credit! Plus, new members that sign up w/ code FORTHELOVE will get 3 audiobook credits for the price of 1.
Learn more: blog.libro.fm/love/
05.02.2025 17:14 โ ๐ 225 ๐ 83 ๐ฌ 13 ๐ 28
Light-skinned Indigenous woman in a dark brown winter coat, blue framed glasses and a reflex N95 mask. I have a surprise and somewhat pleasant look on my face. Behind me are hospital signs. I was happy that my Aranet4 was showing excellent indoor air quality, and that I could get a hospital wheelchair easily since I canโt walk more than five minutes.
A1 Tansi! Hi! Iโm a disabled Indigenous keynote speaker/singer. Iโm also a trauma-informed personal mentor and virtual event host for Covid-conscious women. ๐ in my bio. Been using Visible app daily since April 2024 and love it. Iโm a 4/5 today after a crash yesterday. Thx for this #VisibleAppChat!
05.02.2025 17:59 โ ๐ 3 ๐ 1 ๐ฌ 0 ๐ 0
Q2 has anything surprised you that can raise your heart rate? What sorts of things do, if you want to share?
#visibleappchat #visibleapp #mecfs #longcovid #pots #spoonie #chronicillness #chroniclife
06.02.2025 15:22 โ ๐ 3 ๐ 1 ๐ฌ 4 ๐ 0
Q1 introduce yourself however you feel comfortable (no dx or medical info needed, this is a public forum, unless you want to). Bonus points for pet pics!
#visibleappchat #visibleapp #mecfs #longcovid #pots #spoonie #chroniclife #chronicillness
04.02.2025 16:33 โ ๐ 4 ๐ 1 ๐ฌ 9 ๐ 0
Using #visibleapp to pace with #mecfs / #longcovid? Join #visibleappchat for daily-ish questions and conversation. #spoonie #chroniclife #chronicillness #pots
04.02.2025 16:30 โ ๐ 5 ๐ 2 ๐ฌ 0 ๐ 0
I probably should have used #visibleapp too. ๐
#visibleappchat
04.02.2025 16:28 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
You can also just click on this account profile to see questions. That's why I made a separate one from my person one, so they won't get so lost #visibleappchat
04.02.2025 16:27 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0
You can search #visibleappchat and Q1, for instance to find it. It will help conversation if responses use the tag and A1, for instance, for answers, or reply to the original question post. If possible, but also I imagine we are all pretty tired! So don't worry about it if it's too much/forget
04.02.2025 16:26 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
#visibleappchat will be a daily/ most days question that you can join at your leisure. The format will be the tag and the question number, like Q1.
04.02.2025 16:22 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0
She/her. Severe ME, CCI/AAI, hEDS & co, AuDHD. Ex makeup artist, ethical vegan, socialist. #BlackLivesMatter
#TransRightsAreHumanRights
Support striking workers
The Bateman Horne Center is a medical center of excellence for people with ME/CFS, Long COVID, fibromyalgia, post-viral illness, and comorbid conditions.
Previously an alien, but really a monkey. MECFS since 2017. โฟ๏ธ๐ Science, nature, climate, dogs, politics makes me mad but I just cant help myself. Peace & Love ๐โ๏ธ (definitely not fear). Lucky to live in Bundjalung Country ๐ฆ๐บ (Advocate for Bleats not Skeets)
Passionate about: ME/CFS, moths, native plants, early music
#visibleapp
Mender, sewist, crafter, spoonie
I share #ChronicIllness, #ChronicPain, #disability & #MentalHealth info from VARIOUS #perspectives. #Lupus #Sjogrens #AntiphospholipidSyndrome #epilepsy Open to constructive chat, will block overly opinionated people.
https://achronicvoice.com/
๐ง The audiobook company that shares profits with independent bookshops
๐ Certified B Corp
๐ Shop, sign up, find bookshops, & more: www.libro.fm
A genderfluid wordsmith & artist w/ spicy neurologies & insatiable curiosities. Autism, cPTSD, cyclothymia, OCD & my SpIns make up who I am. Ace/aro. I like to garden, read, make things & nap. Be kind.
โจ๐ชด๐๐ชผ๐ชฒ๐โ๐ซ๐ปโจ
Chicago parent interested in local and international human rights, chronic illness treatment, and social justice. I like board games, beautiful outdoor spaces, and speculative fiction.
*photo of green leafy branches against a blue sky
Retired Canadian currently living in Mexico. Mostly home-bound and bed-bound with Long Covid since mid 2022.
Teacher. Reader. Covid cautious since the beginning. Recovered covid long-hauler after 18 months. She/Her
Living with Long Covid.
Doing my bit to support UK healthcare workers with Long Covid.
Chair of Supporting Healthcare Heroes UK.
Associate Member Long Covid Support.
Former Professor of Childrenโs Nursing. #FBLC
Born in 97 - Agender - They/Fae
I can also be found as TamaPawchi on Twitch!
Iโm a disabled person (ME/CFS, LC, MCAS, hEDS, POTS, etc +++) distracting herself, when able, with plants, pets, photography, crafts, reading, trinkets & treasures
they/she
18+
Enby
PoTS๐ง
LLA๐ฆ
This account will prob be about biomed researchโcomplex chronic illnesses and Covidโw/some material on disability justice and organizing.
ME โ05, LC โ23, many of their friends along the way. Very severely ill (FUNCAP 0.9). No unsolicited advice please!
she/her
environment, sewing, books, art
#VisibleHealth
Physician. Parent. Your weird queer aunt in the woods (Upstate NY). she/they/๐ณ๏ธโ๐
Mostly thinking about birds, trees, and dirt.
I love the library. ๐
(Not medical advice)
Jersey Girl living in the Eastern Panhandle of WV