Lmst

My brain fog has been so bad the last 18 months due to constant inflammation, I am seriously getting concerned.

Things that I was able to do/think of easily in a second language (Chinese) are gone. It's getting harder and harder to think my way through things that once came naturally to me. It's terrifying. Is anyone else going through this?

Carrie 🌏 My Several Worlds boosted:

Spooktober. 19 days have passed. Kitty!
I hadn't thought of anything so... Black cat!
Also, thank you so much to everyone who liked and boosted and followed that painting of the raven. It means a lot to me!
Certainly makes a nice change from getting swallowed up by the Instagram algorithm and never seen again
#spooktober #inktober #MastoArt #fediart #cat

A black ink picture of a cartoonish black cat sitting elegantly and glaring towards the viewer

Here are some 'Did You Know?' facts written about #LifeWithDisability: buff.ly/34TxK9Z

It's 2023 and we are still harassed when we don’t fit society’s idea of what ‘disabled’ looks like.

#TimeToBelieve #arthritis #fibromyalgia #Disability #IWD2023 #InvisibleDisability

Blog banner for MySeveralWorlds.com and the article 'Do you know these facts about invisible disabilities?' The banner features the author Carrie Kellenberger in several photos with her canes and with her wheelchair.

@shaknais Yes it does. For decades.

Waking up with #ChronicPain every morning: #CPP
Don't cry. Don't cry. Don't cry.
Don't cry. Don't cry. Don't cry.
Don't cry. Don't cry. Don't cry.
Don't cry. Don't cry. Don't cry.
#axSpA #fibromyalgia #MyDisabledLife #IWD #InvisibleDisabilitiesWeek
#CareInMotion #MECFS #PsA

Is something wrong with Mastodon? I haven't been here in a while and just recently came back but it's slow and glitchy. Photos sometimes upload. My feed is barely loading.

Today is the start of #InvisibleDisabilitiesWeek aka #IWD!

"I need to be vocal about my disability because I don't look sick. You will never see me on days I do look sick because those are the days I don't leave my bed." Carrie, MySeveralWorlds.com

#IDW23 #CareInMotion #ButYouDontLookSick #axSpA #MyDisabledLife #DisabilityInclusion #MySeveralWorlds #Fibromyalgia #DisabilityAwareness #MECFS #InvisibleDisability

Carrie is wearing black satin pajamas. She is sitting in bed next to a sign that says:

"I need to be vocal about my disability because I don't look sick. You will never see me on days I do look sick because those are the days I don't leave my bed." Carrie, MySeveralWorlds.com

@Rhube Totally agree. It took years for me too. Thanks for sharing.

Carrie 🌏 My Several Worlds boosted:

>went for what they may consider a normal walk two days ago. Or fell out with their friend yesterday and it raised their heart rate.

It is so very ATYPICAL to what we're used to identifying. It took me *many* years before I had a clear case where *I* recognised that I was flattened on Sunday because I walked around town for four hours on Saturday.

Now it's obvious to me, because I know most of the causes and signs. But doctors don't help you recognise those until you're diagnosed. #MECFS

Carrie 🌏 My Several Worlds boosted:

One of the things that makes #MECFS hardest to get diagnosed with is that I do not think PEM is easy for PATIENTS to identify.

I'm pretty sure the first many times I was asked whether my fatigue came with a delay I said no, because when you don't know what's going on you regularly push yourself to the point of crashing. Causes are either not obvious or are immediate, because it's a CRASH, not PEM. &when it is PEM, how is a patient supposed to put together that they feel shit today because they>

When a patient has a low symptom day, we sure don't want it happening on hospital days.

For one, it gives our docs a false sense of our reality. For another, it's an absolute waste of a rare low pain day!

My doc doesn't want me to bring my wheelchair to appointments. He wants me to walk in. (I understand why. He needs to see my gait because of #InflammatoryArthritis.

But if I'm spending 5 hours on a hard seat that's going to result in terrible pain for me. So it makes a lot more sense to bring my wheelchair, doesn't it? I hate that hospital days make me worse! 😭

It's good to have someone in my life who knows my patterns with #ChronicIllness. I spent 5 hours at the hospital on a hard seat. (It was a low symptom day.) As soon as I told my husband that, "He said you better rest. That is going to hit you hard in 48 hours." Sure enough, hello PEM. #pwME #MECFS #fibromyalgia

Disabled people are almost always invisible.
We are very rarely ‘seen’ by able-bodied people.
Even in 2023, people still move past me like I’m not there. It hurts to know I am invisible to most people.

#IDW #InvisibleDisabilitiesWeek #CareInMotion
#MySeveralWorlds #disability

An image of a person holdinf a mirror in front of them to show they are invisible.

😷 Thank goodness most people are still masking in #Taiwan esp at hospitals in Internal Medicine. It's rare to see people w/o a #mask at the hospital. Masks are needed! The hospital is packed today. Seems like everyone is sick. Lots of phlegmy coughs! 🤢🤮
#HighRiskCovid19

Check out my video for Support #Fibromyalgia Network & my presentation on international #advocacy.

One of the most common questions I get is how My Several Worlds does so well & how I've created a massive patient centered hub in Taiwan and Asia with no help from large organizations or partners. In short, I like to keep things close Welcome to my worlds. Watch it here: https://youtu.be/aW2t-UZJZ3k

#fibromyalgia #ChronicPain #ChronicIllness

@kittenroyale I hear you. I'm 48 and can barely move. It's everywhere and very insidious.

Save the Dates - May 5-6 - Annual 2023 Global #Spondyloarthritis Summit hosted by Spondylitis Association of America.

I'm pleased to say I'm covering this event again for the SAA.

#SpA topics:
💙 Flares & Possible Triggers
💙 SpA Research Updates
💙 Sleep Issues
💙 Women & SpA
💙 Diet & Nutrition
💙 Surgery & Joint Replacement Recommendations
💙 Cardiovascular Disease
+ more

Register today:
https://spondylitis.org/.../saas-5th-annual-global.../

#SpondySummit #Spondylitis #axSpA #AnkylosingSpondylitis #PsA #ArthritisAwareness