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.’"
“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!
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/
#Rattle those #Pots and #Pans by Kaye Menner #Photography Wide variety #Prints & lovely #Products at:
https://kaye-menner.pixels.com/featured/rattle-those-pots-and-pans-by-kaye-menner-kaye-menner.html
Video from NBC News:
Chimére L. Sweeney, director and founder of The Black Long Covid Experience, talks about living with Long Covid.
https://www.blacklongcovidexperience.com/
Tagging ME/CFS and POTS since many Long Covid patients have those diagnoses.
Solve ME announced the release of a new community developed resource guide for Infection-Associated Chronic Conditions (for example, Long Covid, ME/CFS, POTS, and other chronic conditions).
https://solvecfs.org/wp-content/uploads/2025/03/IACC-Resource-Guide.pdf
@RavynWitch
There are so many people out there POTS and EDS and they don't know and some of them that asked about it were laughed at by their doctors.
The anxiety thing is also very interesting because I know of a lot of people (me included) who have a "backfeed" anxiety where the brain senses anxiety-like physiology and then stretches to blame it on something to be anxious about (I've watched my niece become scared of things because of this as well).
Please make sure she fights for a tilt-table test. In my pursuit of diagnosis I was laughed at by cardiologists until I finally found one that understood (this is also the same doctor that realized I have Ehlers Danlos as the primary Dx)
Had a long conversation at work today about my #POTS and she’s going to talk to her doctor about getting tested - after years of being told her high heart rate and dizzy spells are “anxiety.”
(I also suggested she might need a new doctor.)
THIS is why I’m so open about my health struggles. You never know who it can help.
Giving away 2 bamboo #plants in #pots and sacks in south of #France if anyone is interested.
Warning: #bamboo is extremely #invasive & needs to be planted in strong & safe pots to prevent spreading.
Available on #Leboncoin
https://www.leboncoin.fr/ad/jardin_plantes/2934426844
Those moments when your little man, Birger, refuses to leave the side of the tub while you shower. Mind you I was sitting, but my heart rate spiked and Birger refused to leave my side and refused to stop watching me. I got out got dressed and everything; his eyes were locked on me. He followed me into my bedroom where I promptly flopped on the bed; he then ran off to do his own thing. He amazes me more and more every day!
#ServiceDogInTraining #POTS #DogsWithAJob #Disabled #Disability
Here are my 3 good things of the day (February 20th 2025):
(Try to think about yours as well, it can really help! 
And if you want to, share them with me in the comments.)
- a phone call
- drawing
- having a bit more energy
Ich habe immer wieder mal so Phasen, in denen es mir wirklich schwer fällt, bei mir zu bleiben und nicht in pure Angst zu verfallen, was meine Zukunft und Existenz auf diesem Planeten betrifft.
Eine schwere Erkrankung zu haben, für die es keine Heilung und wenig Behandlung gibt, ist da wirklich kein Pluspunkt.
Trotz allem kristallisiert sich zumindest immer mehr raus, was ich eigentlich gern in dieser Zukunft noch machen würde. Also ich hab schon Hoffnung. :)
"Long COVID Cure Would Make RFK, Jr. a Hero" By Susan Estrich
https://www.newsmax.com/estrich/long-covid-robert-f-kennedy-jr/2025/02/18/id/1199512/
Includes some discussion of ME/CFS & POTS
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #POTS @pots @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
1/
But here’s another thing: I sometimes get fainty and wobbly. It alarms people, but it’s a normal thing for me. (It’s part of a thing called #POTS which is tied up with the #MECFS ) and I could feel it coming on. So I said “I’ve gone fainty, don’t call an ambulance, but I’m going to sit on the floor for a while now. It’s ok, this happens, and I’ll be fine in a little bit.” She said “You’ve gone an awful green colour!” I said, “yes, that happens, it’s ok, I just need to have my water and do the things I have to do here.” And the dressing room was a bit stuffy so the very kind lady got a fan and stood and waved the fan at me - IKR? How kind is that?! And in a few minutes my wobbly passed and I could get up and go to the counter, and because this is a time capsule store, there is a big old padded armchair with carved wooden arms at the counter for those of us who need it or to park the partners while the women shop. (Next post)
Here are my 3 good things of the day (February 17th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- letting myself feel emotions
- a good phone call
- managing to finish a to-do
Here are my 3 good things of the day (February 16th 2025):
(Try to think about yours as well, it can really help! And if you want to, share them with me in the comments.)
- being able to wash my hair
- resting
- dizziness being a bit better
