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.

Hab aktuell 3 Podcast-Hörempfehlungen zum Thema #MCAS und #MECFS

Nina von der Mastzellenhilfe beim Fasy.nation Podcast https://www.mastzellenhilfe.de/mcas-und-me-cfs-literatur/ & https://www.fasynation.de/der-podcast-zum-chronischen-erschoepfungssyndrom-me-cfs/

Die Degranulate ME Folge vom Voices on ME/CFS Podcast der Meduni Wien https://www.meduniwien.ac.at/web/forschung/projekte/computer-based-clustering-of-chronic-fatigue-syndrome-patients/podcast/

My life has improved since I realised that the non-binding socks they recommend for diabetics are also great to avoid pressure triggered hives on my legs and feet. #MCAS

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!

It's my birthday today, and I wrote this thing on my blog about how I experienced the last year: https://www.johannesjaeger.eu/blog/living-with-fatigue-and-a-society-that-does-not-care.

I really needed to get this out of my system.
Millions are missing, and nobody seems to care.
#MECFS #MCAS #LongCOVID

I have #MCAS and #MECFS since January 2024, triggered by an #RSV infection that should just have been a cold at my age. But it wasn't since I had #COVID in 2021...

I've been ill for
- more than a year, or
- more than 440 days.

Stop the spread.
Millions are missing worldwide.
#COVID is not over.

My monthly health update for my supporters to view is here: ko-fi.com/post/Health-... Thank you to all of my supporters for financing my mutual aid program and ensuring I can pay for the essentials of my care so that I can continue to give care to others! #MutualAid #selfcare #Methylation #MCAS

Health Update - Feb

Da ich an chronischen Krankheiten leide, versuche ich (neben Medikamenten zur Stabilisierung dieser) auch:

Radikale Akzeptanz - des Verlustes meines bisherigen Lebens.

Radikale Akzeptanz kann als die Fähigkeit definiert werden, Situationen zu akzeptieren, die sich deiner Kontrolle entziehen, ohne sie zu bewerten, was wiederum das durch sie verursachte Leiden verringert.

Dadurch bin ich zumindest psychisch stabil. Und Lebensfreude trotz allem kein Fremdwort.

#postcovid #mecfs #mcas#pots

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. :)

I showered, so now it's time to rub pepto all over my joints so I can apply kt tape and not wanna rip off my skin in a day or two! Now hopefully I won't pick it all off XD
#MCAS #hEDS #ActuallyAutistic

I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health

Don’t make a case for social drinking. Ask WHY folks aren’t drinking

MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.

If you’re unfamiliar with MCAS, I wrote an introduction article linked

You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!

It’s a beast of a disease & hard to diagnose.

https://www.disabledginger.com/p/when-youre-allergic-to-everything

2025-1-22: Fire & Ice

https://www.illmarks.com/025-1-22-fire-ice/

I am one of six winners of the most recent Homiens Art Prize for one of my @illmarks pieces!

I’m deeply honored and thankful, this is the first award I’ve received as an adult for my visual art (vs collaborative design).

I hope that this raises more compassion & allyship for people with post-viral illness, & can be a representation win for our community as a whole—it’s so easy to feel invisible as a disabled & Covid-conscious person these days.

https://homiens.com/the-homiens-art-prize-summer-2024/

2025-1-19 MCAS trigger: allium smell

https://www.illmarks.com/2025-1-19-mcas-trigger-allium-smell/

To my fellow chronically ill people… if you’re flaring right now please don’t discount the impact of the news cycle on your nervous system.

We need to stay informed, but take breaks. Find joy wherever you can. Lean on one another.

Save your strength for the long fight ahead.

I wrote this article as part of my series on MCAS, but many of the tips within it apply to our current situation as well.

We need to give ourselves grace when we can’t identify a trigger. Accept that sometimes we will flare and never know the reason why.

The best we can do is rest, recover, and try not to be too hard on ourselves. Try to learn to let go.

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept