Ich weiß, dass nahezu alle Menschen da draußen ihr "normales" Leben wieder aufgenommen haben. Dass ihr da draußen lacht, weint, was trinkt, euch verabredet, bastelt, lötet, oder einfach Spaß habt.
Ich fühl mich wirklich gefangen in meiner Wohnung, die ich nur gegen einen schlimmen Preis (... starke Schmerzen & Symptome) verlassen kann und gefangen in meinem Körper. An meinem Leben ist nichts mehr wie früher.
Damit hab ich sehr zu kämpfen.
I came to a realisation that I'd make regular phone calls more in general and favour calls over e-mail and online support requests if the support for #HDVoice #EVS was more universal.
I find it hard to understand people on regular phone calls because it sounds very muffled, and it's bizarre how to this day we're stuck with a low sampling rate and quality on regular calls. Even on mobile, different carriers often don't cooperate and don't support HD Voice between themselves.
Oproep peiling
(jonge) mensen die om medische redenen steunkousen/panty's moeten dragen bv om trombose te voorkomen of vanwege #POTS ? fashion designer bedacht een manier om modieuze exemplaren te maken. Ze peilt nu de behoefte (enquete
https://docs.google.com/forms/d/e/1FAIpQLSf6rL9Z1P-i4GM7fPoPVzet86wh0_1tFV-iRGNQr7Li1N3knw/viewform
#19thcentury, #Flowers, #Japan, #Pink, #Plants, #Pots, #UtagawaYoshitsuya, #Yellow
Vintage ◦ Classic ◦ Historical | Art ◦ Design ◦ Inspiration | Restored ◦ Enhanced ◦ Remixed
Prints, T-Shirts, Stickers, & More by @rocketshipretro via RedBubble → https://bigplanetprints.com/go/fpvGr9
My ‘you’re nearly 50’ health MOT has turned up high cholesterol so my GP wants me to try to bring it down with dietary changes. Between only having access to a microwave & toaster (and zero food prep space), my diet requirements for managing my #POTS, trying to up my protein intake due to #perimenopause, the fact that often I struggle to make myself eat at all and the limitations of my #ActuallyAutistic safe foods this is a bit of a ‘mare.
But we do what we must
'Steeds meer huisartsen schrijven off-label naltrexon bij postcovidpatienten voor’
"lage dosis naltrexon van maximaal 5 mg per dag, een middel dat off-label al langer gebruikt bij onder meer ME/chronisch vermoeidheidsyndroom (cvs). Achterliggende hypothese is dat deze lage dosering leidt tot pijnvermindering en een anti-inflammatoir effect. "
"Naltrexon in hoge dosering (25mg) is geregistreerd voor alcohol- en opioidenverslaving, doordat het de werking van morfine blokkeert."
"het opbouwschema van naltrexon op haar Instagram account gezet"
"Daarnaast zijn er nog andere (niet-)medicamenteuze stappen die je als huisarts kunt zetten, zoals nagaan of de pacing goed wordt uitgevoerd. En bij posturaal orthostatisch tachycardiesyndroom (POTS) drie liter water per dag en zout adviseren, en eventueel een steunpanty.’"
"Showering: self-care or self-sabotage?" short blog post by a woman with #POTS and ME.
https://chronicallycraptastic.com/showering-self-care-or-self-sabotage/
"It sounds counterintuitive, but it pans out for people with ME/POTS, sometimes NOT showering is a form of self-care"
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @chronicillness
@spoonies
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots
“We’ve suspected for several years now that there is an association between COVID and POTS. I’m seeing this in my own clinic. My waiting list is longer than it has ever been,” said Dr. Blair Grubb, a UToledo Health cardiologist who has treated and studied POTS for more than three decades. “Now we have the data to back that up. This study helps give validity and voice to these patients, and it gives us a treatable target.”
https://news.utoledo.edu/index.php/03_24_2025/covid-19-brought-about-a-large-rise-in-pots-cases
New #introduction post!
I'm Alicia and I'm a fibre artist (#dyeing #handspinning #felting #needlefelting #weaving #crochet #embroidery #upcycling #sewing) with interests in #mandala #art #psychedelicart #sacredgeometry #neurographicart and #watercolors.
My family and I run a business called @Fibre2Fabric where we dye all sorts of exotic #fibre #yarn, and #fabric.
I live in the country with my partner and our 6 #cats, 3 #dogs, #snake and #crestedgecko where I enjoy my many interests. (#gardening #plants #herbalism #fungi #music #ukulele #piano #dancing #flowart #reading #writing #tarot #poetry #haiku #cozygames and I'm getting more into #opensource / #linux)
When I say flow art, I mean spinning props like #hulahoop #leviwand #puppyhammer #poi #staff #silkfans #firefans etc.
I love #languagelearning. I studied #German and #Spanish as a kid, took #Japanese in uni, and I'm currently studying #ASL #Cree #Tokipona #Spanish and #Chinese. I also dabble in #French and #Latin sometimes and I'm learning #Greggshorthand to write faster. Cree is my favourite language and Spanish is my second.
I've been cursed since childhood with that lovely trifecta of #heds #pots and #mcas. Healing slowly but surely.
Hope I get to meet even more cool people the algorithms would normally drown out on other social media sites. I love it here!
Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. There are no places to go for severely disabled.
I need GOOD PEOPLE TO HELP ME.
I’ve been screaming for years my health & situation keep getting worse.
Help me
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME
@mecfs
@severeme
@longcovid
@RAHU
@chronicpain
@neisvoid
@pwme
Someone please take me in very soon or I will die here.
-No masking
-Mouldy room
-No help
-Little food
-Nowhere to shower. No seat allowed, mouldy
-No aircon (w severe #POTS)
-Sister moved next door comes eat, yell
-Sensory overload
So much more. No places to go for severely disabled.
Need GOOD PEOPLE TO HELP ME.
Screaming for years my health & situation terrible
Help me
#MECFS #LongCovid #ChronicPain #Abuse #Neglect #SeverePwME
I recently created my own website! For all of my telephone related ridiculousness. It's a WIP and there will be plenty more to come as I have more time to sit down and add information/customize my webpage!
Opportunities and Challenges in Using Electronic Health Record Systems to Study Postacute Sequelae of SARS-CoV-2 Infection: Insights From the NIH RECOVER Initiative
https://www.jmir.org/2025/1/e59217/
From the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots
I hate when I can feel my heartbeat in my lips. I am so ready to be back on a beta blocker. #pots #chronicillness
Tragus Nerve Stimulation Attenuates Postural Orthostatic Tachycardia Syndrome in Post COVID-19 Infection
https://onlinelibrary.wiley.com/doi/full/10.1002/clc.70110
From the latest Science for ME weekly update
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
#PosturalOrthostaticTachycardiaSyndrome #POTS @pots
New mix and match range from Burgon & Ball for indoor gardeners - welcome to the Collector Range.
#gardening #indoorgardening #houseplants #conservatory #style #pots #tools #burgonandball
https://www.mandycanudigit.com/2025/03/13/the-collector-range-from-burgon-ball/
![Me: [waking up]
My Apple Watch: Would you like to record this workout?](https://files.mastodon.social/media_attachments/files/114/217/530/656/412/212/original/8ed9385922d84b36.png "Me: [waking up]
My Apple Watch: Would you like to record this workout?")
