The Road to Recovery is the Longest of Them All — Read on A Chronic Voice .com

"one of the deadly #AutoimmuneDiseases that I live with is #AntiphospholipidSyndrome. It tends to hum along in the background most days, but when it strikes, it aims for the kill.": buff.ly/NqIh84f

#ChronicIllness #BloodClots #InvisibleIllness #disability #recovery #ChronicPain #NEisVoid

These temperature swings are awful on my joints. Cuddling up with an ice pack AND a heating pad! 😓 #NEISvoid #DisabledLife #SpineInjury #MeningealCyst #Sciatica #JointPain #RheumatoidArthritis

Tried a new sleep med last night. I’m still trying to wake up 16hrs, 1 prescription long-acting stimulant, & a Redbull later.

I guess I can’t complain that this one doesn’t work! 🙃

#neisvoid

[Medical diet etc]

my ability to do basic tasks is really so much worse than usual when my body's very "ehhhh" about digesting and absorbing nutrients

this is extremely logical and obvious, but it's somehow a shock during every flare

#NEISvoid

You would THINK knitting would be a nice quiet hobby I could indulge in while resting from over-exertion. So someone please tell me why my heart rate is over 110 while I fucking do it!! Rrgh. Fail-body! #NEISVoid

day 9 of the campaign. haven't had any new contributions for some time now. waiting on a key response atm.

I hope to make some more progress in the right direction. any help to that end would be greatly appreciated.

gofund.me/c252eb04d

#signalboost #NEISvoid #helpfolkslive #mutualaid

Living with chronic pain is so exhausting. Is today gonna be a good day? Am I going to be able to work? Can I brush my hair? What's worse is that no one sees your disease so they think you're faking.

Something I've been noticing lately is that when I take an adequate dose of my pain meds, if most of the pain relieved I have more energy and don't feel nearly as tired as I did before I took it.

Just being in #pain is fatiguing ALL BY ITSELF, even if you've done nothing all day.

#NEISvoid

S2E1 of #Cross just started in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#NEISvoid #mecfs #DisCo #ForTinu #spoonie #ForTInu #insomnia #ChronicPain

Sharing my be-crowed sky for those who can't be outside.

#MECFS #LongCOVID #NEISvoid

evening post. there's something really promising happening in the background. I won't give details yet, but just know it's good.

what I can say is that it doesn't stop me from needing to crowdfund. I haven't had any donations for a bit now. hoping to change that.

gofund.me/17f0bf9b7

#NEISvoid

#TheComeback is playing next in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#NEISvoid #comedy #mecfs #DisCo #ThrowbackThursday #spoonie #MutualAidMarathon

I am in the worst mood

I did things out of order & now I can’t find several things I use throughout the day, & I’m too exhausted to look for them

I tried to give myself a little gift by singing a little bit & got a series of painful coughing fits instead

#neisvoid

#Dragvestigations is playing in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#lgbtqrepresentation #neisvoid #mecfs #DisCo #ForTinu #spoonie #cannabiscommunity

A cartoon from Duolingo featuring a character called Oscar wrapped in a towel and looking in a mirror above a text saying You should do all your lessons with ME

Have no fear Oscar, every single lesson is done with #ME ♟️😁

#MECFS #NEISVOID

Moment By Moment Hello There! I wrote this post on March 4th of this year. Just after I wrote it my computer crashed and died. The following month I had surgery to implant an Spinal Chord Stimulator for my arms. Th…

"At these high levels of #pain my rational #mind doesn’t work well, or at all sometimes. My logic is shot, reason is out the window and I easily become desperate for #PainRelief from this place.": buff.ly/VkOoU3n

byKimberlyFWolfe1
#ChronicPain #CRPS #NEisVoid #ChronicIllness #disability #spooie

a group of people riding motorcycles with the words this is so bleeping fun written below them ALT: a group of people riding motorcycles with the words this is so bleeping fun written below them

#StarTrekLowerDecks is playing in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#morningcartoons #spoonie #NEISvoid #StarTrek #mecfs #wakenbake #cannabisculture #DisCo #ForTinu

While technically not mutually exclusive, i feel like some people identify much more with the label "disabled", and others with "chronically ill"

What about you, fellow #LongCovid gang? If you have to pick one, are you disabled or chronically ill, or something else? #NEISVoid

Coping With Difficult Pain Days: Hope, Emotions & Getting Through it - Despite Pain Coping with chronic pain is difficult, but when you go through a really bad spell for a while, it's even harder. This post is about how I cope

" #ChronicPain interrupts my life at every opportunity, putting its stamp on everything that matters to me. There r mornings when I wake up thinking it’s going to be ok..But half an hour later, I’m barely able to get dressed.": buff.ly/uaWCccN

by despitepainblog
#NEisVoid #ChronicIllness #disabled

Trump’s personnel agency is asking for federal workers’ medical records | CNN The Trump administration is quietly seeking unprecedented access to medical records for millions of federal workers and retirees, and their families.

WTF?!! #NEISvoid #ChronicIllness #DisabilityJustice #Privacy #HIPAA

waking up sucks and everything was wrong and i handled most of it
enough to be better now

but ugh it’s so annoying to wake up.

all the IV fluids refills and medicines that wore off and i’m thirsty AND have to pee and feel stiff all at the same time

#NEISvoid

When you don't notice the fatigue until you try to stand up #NEISvoid

It's the 31st Birthday of #AGoofyMovie

So hop into the #ChronicLoaf stream and watch it with us right now!

mzelo.com/app/rooms/ch...

#animation #WeedyWednesday #DisCo #NEISvoid #cannabisculture #spoonie #MutualAidMovies

#NEISVoid #ChronicIllness #Spoonie ?

I have had #MECFS symptoms for as far back as I can remember - literally having had exercise intolerance from at least kindergarten on.

I did not have developmental delays or muscle weakness

I have eds - originally type 2, no gene, never retyped.

NE1 else?

It's time for #Dragvestigations in the #ChronicLoaf stream

Hop in and watch with us @ mzelo.com/app/rooms/ch...

Then we're watching the newest #JoshJohnson standup hour!

#WeedyWednesday #NEISvoid #ForTinu #lgbtqia+ #DisabilityCommunity

My pain is also jacked up from the cold and wind today. 😭 Legs and back hurt so bad. #spoonie #neisvoid

Went on a cold, short walk with my doggo clients for the next week. Poor Scooter is a long haired Chihuahua and he's shivering on my lap and can't seem to get comfortable. 😔🥶 Dis is bullshit and I want to zooooonk. 😴😴😴 #spoonie #chronicpain #neisvoid #disability

Floatation Therapy: Did it do Anything for My Chronic Pain? Read about my first experience in the post. www . a chronic voice .com (Swirls of blue watercolour form the background, invoking a feeling of cool calm.)

"as those with #ChronicIllness know full well, #stress is a huge trigger for #ChronicPain and #FlareUps of their conditions. This then causes more stress, and the vicious cycle goes into a buggy loop.": buff.ly/Wd9P09R

#NEisVoid #FloatationTherapy #relax #MentalHealth #StressManagement #SelfCare

We're watching season 1 of #TheComeback in the #ChronicLoaf stream

mzelo.com/app/rooms/ch...

#NEISvoid #comedy #mecfs #DisCo #ForTinu #MutualAidMarathon #spoonie #mocumentary

#NEISvoid, highly recommend!

Being able to tell your story in a succinct and compelling way is such a valuable advocacy tool. Stats have their place but most people, incl most policymakers, have no idea how ME/CFS or Long Covid affects someone’s day-to-day life. A vivid illustration goes VERY far.

I’m house hunting/moving soon. Does anyone have any advice for moving with chronic illness and ME/CFS? #NEISvoid