Someone on reddit mentioned that they had pretty bad muscle aches on days 3-5 after their infusions. Muscle aches are basically my life with #fibro so I wasn't sure it mattered much for me. I WAS SO WRONG. My body aches so much. I can't wait to finish working & just go soak in a bath. #GravesDisease #ThyroidEyeDisease #ChronicIllness #Spoonie #SpoonieThings #Fibromyalgia

I had my first steroid infusion today. It went well. I’m still waiting on the after effects but so far so good. #GravesDisease #ThyroidEyeDisease #ChronicIllness #Spoonie #SpoonieThings #Fibromyalgia

I start weekly steroid infusions on Monday so this weekend is all about prepping my apartment in case I feel like absolute crap after the first infusion 😩 #GravesDisease #ThyroidEyeDisease #ChronicIllness #SpoonieThings #Spoonie #Fibromyalgia

I used to do this in college with things like lasagna & stuffed shells & homemade fried rice, but back then my freezer storage options were great so things didn’t last long. So I am excited to try these new things & put my vacuum sealer to work on more than just meats. #ChronicIllness #SpoonieThings #Spoonie #cookingwhiledisabled

So this weekend helpful tooters taught me about freezing muffins. Then I randomly came across a TikTok about soup cubes for freezing portioned out soup. And I just realized I can now freeze portions of chili & cornbread muffins & this is going to change my life 🙌 I don’t cook big meals often because #ChronicIllness #SpoonieThings & because I live alone. So the idea that when I do have energy to cook, I can make bigger meals & have a *good* leftover storage option is so great

Ich würd ja gern mal so EINEN Tag haben, der nicht nur aus fucking Survival-Shit besteht. One fucking day. Es kotzt mich einfach so an.

#MECFS #SpoonieThings #IHateThis

Wenn jetzt noch alle relevanten Personen mal die NICE Guidelines zu ME/CFS lesen, verstehen und anwenden würden, that would be great.

Bei mir hört's schon im Themenfeld "adequate and timely access to diagnosis" auf, geschweige denn auch nur irgendwas in Sachen regelmäßiger Kontrolle, Behandlung, oder auch nur schieres Symptom-Management. Ich hasse alles daran.

(Quelle/Auslöser: https://disabled.social/@tomkindlon/109712908390191632)

#MECFS #PwME #SpoonieThings

21/

“It is helpful when you can help take care of my physical needs, so that I can focus on meeting my emotional needs. For example, when you offer to drive or do the dishes, you just saved several of my spoons so I can use them elsewhere in my day. My spoons are my lifeline. Please support me in how I use them”

#spoonie @spoonies #spoonies #spoonielife #SpoonieThings #spooniesupport #chronicillness #chronicallyill

also, a few more hashtags that i want to be associated with here on, because i saw people doing this, too & it might be helpful to find each other:

#chronicillness #chronicallyill #chronicPain #disabilities #spoonie #spooniethings #invisibleDisabilities :)

i love that so many people have found my profile already, so happy !! /gen