*sigh*

My inner ear balance has always been screwed because of #CMT1A. The #ADHD doesn't help either. Due to this, I've always been a fall risk. It's gotten worse as I age.

I've begun the process of training myself not to bend over to pick up stuff on the ground. Use the grabber, not my hand.

High winds today. Barometric pressure change has flared the #CMT1A and #Fibro pain. Spending it in bed, dozing, playing Fallout 4, or watching videos depending on focus ability. The fall yesterday didn't help.

Oh well, just going to rest and wait things out.

#ChronicIllness

Full sun. Given my tarot reading this morning... I've layered up on my protection hair sticks and necklaces. I just need to keep going, regardless of what the f-ing insanity the rest of the world is up to now.

Layered up my protection jewelry, hair sticks, and personal wards after that reading. Didn't expect to need that last hair stick immediately...

#Witch #Gay #GenX #ADHD #Autism #PTSD #CPTSD #Fibro
#ChronicIllness #CMT1A

Riverside CA 54° Rain

I've been up since midnight.

My body made sure I knew it was coming by giving me acid reflux bad enough to wake me up since I was ignoring the full body ache. Rain started about 4am and is still going. Naturally, on a day where I can't stay home in bed.

Joy!

#CMT1A #Fibro #ChronicIllness

How my 2026 has started:

Tailbone (coccyx) is angry. Sitting is painful, even w/ donut pillow.

2 consecutive days of rain. General pain from #CMT1A, #Fibro.

W/in 2 rows of finishing 1st skein #Knitting my scarf.

Got my 100 days of main meds.

Gorged on 2nd day of rib-eye roast.

Prep for therapy

Second storm for the week coming in this morning. Hands, legs, & lower back already letting me know that the barometric pressure is dropping fast. The #CMT1A, #Fibro, & Osteoarthritis in my knees are starting flare up cycle. Meds & rest until this storm is done. #Knitting on hold.

#ChronicIllness

Meme = Chronic Illness Siamese Graduated blue background White text I'm constantly torn between "I can't let this disease rule my life." And "I have to listen to my body and do what it says."

#ChronicIllness #Meme #Fibromyalgia #CMT1A #PTSD #CPTSD #Autism #ADHD #AuDHD #ODD #SAD #Anxiety

Info meme 2 pie charts comparing a healthy person's mind with a chronic pain person's mind. Mind of a healthy person: Pie chart equally quartered with: light blue-green labeled self, red labeled family, bright pink labeled work, green labeled other things. Mind of a chronic pain person: Half of the pie chart in dark blue labeled pain, an eighth labeled other stuff in green, an eighth labeled self in light blue-green, an eighth labeled family in red, and an eighth labeled work in bright pink. Text below the pie charts Still wonder why I sometimes am distracted, grumpy, or "out of it"? Tiny print authorship www.survivingchronicpain.com www.facebook.com/SurvivingChronicPain

Much of my mind's energy is spent on active pain ignoring/suppression during flare ups of different body issues. #CMT1A, #Fibromyalgia, #Migraines, Osteoarthritis, and/or kidney cyst. Sometimes it's more than 1 at a time.

I actively ignore meds until my mental suppression fails. So, I get snippy.

Meme Simon's Cat Cat flat on back, rear legs in the air, front legs flat on the floor. Cat butt hole on full display the way the do...

Today & tomorrow are going to be Self-care days. I pushed my body hard yesterday. Totally worth it, but I knew the price of doing it during rain & barometric pressure change.

My #CMT1A & #Fibromyalgia are fully flaring. It'll take 2 days to a full week to recover.

This is my life.
#ChronicIllness

The evidence of my inability to just drink coffee without spilling. All I did was pick up the mug and move it towards my face hole for consumption.

Ugh.

*wipes the dry erase board and picks up the marker*

Days without spilling coffee: 0

Hand tremors from #CMT1A just suck. Everything ends up on me, literally everything. Most of my clothes have permanent stains I can't get out...

Meme Picture SoCal sunrise bringing pink clouds to trees and palms. Text May today's Dawn find you with abundant calm, clarity and contentment

My wish for you

#Witch #GayWitch #WitchSky #Pagan #Gay #GenX #Autism #ADHD #CMT1A #Fibromyalgia #PTSD #CPTSD #ChronicIllness #Cats #CatSky

In other words, every community I participate in and have grown to appreciate through my time here. Each gives me one (or more) of the 3 C's in the #Meme.

🫶🥰💞

*ponders birthday in 7 weeks*

Honestly, I'd just like postcards, sent through the mail, stamped. Whatever you think appropriate. From any of my tagged communities.

Lael
3271 Chestnut Street
Riverside CA 92501

#Witch #Gay #GenX #Autism #ADHD #CMT1A #PTSD #CPTSD #Fibromyalgia #ChronicIllness #Cats

FB post from 4 years ago about #ChronicIllness and the battle between mental vs physical.

"It is like a duel between brain fatigue and physical fatigue. Executive Dysfunction/brain fog vs Chronic Fatigue/Pain. Both want dominance; I want both to exit entirely."

#Autism #ADHD #CMT1A #Fibromyalgia

My walnut cane. I do actually use the damn thing. It's utterly random when my legs and body go on strike and I kiss the ground abruptly.

I'm proud of myself! I just stood up from the Porch throne and instantly knew my legs were going to fail if I moved. Instead of my usual ram through and ignore the fall risk, I asked hubby to hand me the cane I keep hanging from the coat hooks right inside the front door.

#ChronicIllness #CMT1A

Summer selfie as the sun rises over the Porch Domain. Enjoying my pearls and resisting clutching them.

Any one of my issues is a lot to handle individually. When 2 or more becomes a flare up, it becomes crippling in ways I can't even describe. None are visible.

#ChronicIllness #PTSD #Autism #ADHD #Fibromyalgia #CMT1A #Diabetes #UnspecifiedAnxietyDisorder #SeasonallyAffectedDysfuntion #Migraines

Eine neue Studie, gefördert von @afm-telethon.bsky.social, soll neue #Biomarker zur Diagnose und Prognose des Krankheitsverlaufs für junge Patienten mit #CharcotMarieTooth Typ 1A (#CMT1A) identifizieren. http://dlvr.it/TKqxvg

As someone who has #CMT1A myself, it was fascinating to see someone else expressing their feelings about this rare neuromuscular disease

FML
CMT1a has flared in my calves. Incredibly tight and painful. Massage not releasing the muscles at all. This is the nerves over firing in the muscles and just returning to the contracted state immediately after releasing. It's distracting and shitty timing. Stuff to do!

#ChronicIllness #CMT1a

I look back on those early years with wonder. I felt like an absolute alien of a person, dying to be loved and accepted but hating to be touched. Greta MacMillan CSF Leak, Hyper mobile Ehlers-Danlos Syndrome, Mast Cell Activation Syndrome

For the 13 years before getting accurately diagnosed, my diagnosis journey was one of misdiagnosis and humiliation. Dominick Calsolaro Charcot-Marie-Tooth (CMT 1A) Disease

The writers in Kaleidoscope #RareDisease Stories show strength, courage, creativity, and, even through the fear, hope.
~🦋
https://a.co/d/3HxjJ6P
Proceeds donated to NORD
#CSF #hEDS #MCAS #CMT1A #PulmonaryFibrosis #Scleroderma
#ChronicIllness #Rare #SpoonieSky #ZebraStrong

Full fibro flare combined with hereditary neuropathy flare. I know we need the rain, badly. (California) I just wish my body didn't punish me for weather changes. Back to bed for me today.

#chronicillness #fibromyalgia #cmt1a

Peripheral Neuropathy sounds like a good band name #CMT1A

Every time I shave the callus on the bottom of my foot I get a little too close to the edge and end up rubbing the skin around it and making it tender, it almost itches in my shoe.
#CMT1A

Trump sparks outcry with implication that DEI policies are at fault in D.C. midair collision “We have to have our smartest people” as air traffic controllers, Trump said Thursday morning.

This is literally throwing the Americans With Disabilities Act under the bus. From 1990 to 2025 we chipped away at equality.

As someone with a progressive degenerative neurological condition, an American overseas, I am aghast.

#cmt1a #ehlersdanlos #ada

www.nbcnews.com/news/nbcblk/...

CMT Research Foundation | Changing the Legacy of CMT The CMT Research Foundation (CMTRF) is the only organization focused solely on delivering treatments and cures for Charcot-Marie-Tooth (CMT).

All I want for Christmas is nice but stable beautiful black boots. Is that too much to ask?

And oh yeah. A treatment for #cmt1a

cmtrf.org

Halfway down the block and my ankles said “we can’t do this” — my nerve disease clearly has progressed a bit since that purchase. Just not what I wanted this morning. I wanted to wear those beautiful boots. #cmt1a

There are some days - particularly days when I want to wear nice shoes - that the fact of my nerve disease #cmt1a really makes me depressed.

#CMT1A – How a tired nerve restricts movement: Talk by Lisa Linhoff🗨 at @ndw_goe: “Understanding metabolic disease mechanisms in nerves can help develop targeted therapeutic approaches to improve the quality of life for CMT patients.” #ndwgoe #ndw22

How a tired #nerve restricts movement – Learn all about #CMT1A in the talk🎤 (German only) by Lisa Linhoff at @ndw_goe on July 9 from 10-10:45pm in the auditorium at @MPSGoettingen. Sign up here: ndw.uni-goettingen.de/index.php #ndwgoe #ndw22