Some days are harder than others, and none of them are easy. I try not to mourn who I was, nor hate who I've become. Today was harder, hate was easy, the mourning as sure as sunrise. When the last comes there will be no rest, no glorious meeting. Just an end with no credits and a 5% on the Tomatometer.
#poetry #disability #trauma #braininjury #InvisibleDisabilities
the #TTC should adopt the sunflower 🌻 system too.
it made a nontrivial difference for me the last time i was at YYZ (Pearson airport) - airport and airline employees noticed my sunflower wristband and it was so refreshing not to have to explain yet again 😌
https://www.cbc.ca/news/drt-hidden-disabilities-sunflower-program-9.7025827
It could be generalised, I think, but the point is specific, not general: people don't BELIEVE me when I tell them I can't do things. It's a plea for BELIEF! 👍 😉
Why do we harp on about #InvisibleDisabilities, when nearly all disabilities, diseases, and similar conditions, are invisible?
2/
"Akin to the ideal victim, the ideal claimant of hidden disability must navigate a system built by (and from the perspective of) those with specific preconceived notions of what it means to be a person with a disability and to present as one."
#MEcfs #invisibleillness #hiddenillness #spoonie @mecfs #hiddendisability #invisibledisabilityawareness #invisibledisability #invisibledisabilities
Click below to listen to 💔our story 🫶 Free on Spotify podcast episode:
https://open.spotify.com/show/5ReKUbmJjZG8fbGSg9byRh?si=ykgIEf7vRZe8lxCgj-Ncyw
#disabilityrights #ptsd #anxiety #trauma #civilrights #diversity #donate #share #like #americandisabilityassociation #ADAAcommadation
#Justice4ToniAndChanele #loveislove #lgbt #invisibledisabilities #spotify #podcast
A prominent and wonderful person on Babka posts pictures of her cat with a physical disability.
I occasionally post pictures of my cat Crispin d' Familiar, who has some kind of neurological impairment/executive dysfunction (like me)
This is a moment of real struggle. Trying to remain calm while my body-mind is running maintenance tasks that should have been run while I was asleep last night. From the lack of access to mental capacity, working, and long-term, memory, it's probably maintaining a bunch of those. The light glasses I made to help me not fucking lose it when it gets bad. They send wakefulness signals, stimulating the optic nerve, and also help boost serotonin production.
#disabilities #invisibledisabilities #narcolepsy #narcolepsysucks
"In just six months, eighteen law enforcement agencies across Colorado have adopted Blue Envelope programs. By the end of the summer, the Denver Police Department will add to the list.
"The programs are meant to improve interactions between officers and people with invisible disabilities that might make communication difficult. The namesake blue envelopes contain information about the person's condition — such as explaining that they have autism, Tourette syndrome or are deaf — and how that might impact their behavior or needs. Participants fill out the envelope ahead of time and present it to officers during traffic stops or other police interactions."
#LawEnforcement #InvisibleDisabilities #Accessibility
https://www.westword.com/news/denver-police-blue-envelope-notes-disabilities-24965098
Flashback to 2008 in the Circus Room, Kitchener, when I was touring with Left Spine down and H-427. This is me with H-427 and my former roommate. You can't tell, but I was dreadfully sick here. I ended up in the emergency room the next day because of asthma attacks caused by constantly being around second-hand smoke on tour. #Flashback #IndustrialMusic #InvisibleDisabilities
Hey, folk who have #invisibledisabilities…. How do you explain to people that you don’t have the same body capabilities/endurance/needs as folk who don’t have the same challenges you do?
I’ve been thinking a lot lately about how to better explain to folk that my body is always operating at reduced capacity because my #donotdie medicine slows my heart rate and thus, while I’m fit and strong, my body tires more easily than it might otherwise do.
I can say “oh, I have #LQTS” but folk don’t really get the implications. I can say “remember that person who died from drinking an energy drink/super caffeinated beverage/too much coffee?” And they get that… but… It doesn’t translate to “I GET FUCKING TIRED EASILY AND SOMETIMES I JUST CAN’T FOR A FEW DAYS BECAUSE THE MEDICINE THE KEEOS ME FROM HAVING A CARDIAC ARREST ALSO GIVES ME SUPER LOW BLOOD PRESSURE AND LOW HEART RATE”
I’ve had some friendships end because people thought I was always bouncing because I didn’t want to hang but the reality was I was just exhausted… and some folk don’t get that I sometimes have to change plans because body…
I can’t be the only one
Thoughts?
I went looking online for contraindications to the new med I presumably have to take for the rest of my life, and found out that cannabis is on that list. I've been using cannabis to deal with chronic pain (no pun intended), and one of the side effects of the new med is widespread muscle pain and upset stomach. So I guess I'm just supposed to rawdog chronic pain now. Oof.
I wonder why I wasn't warned about this.
This is gonna suck.
#ChronicPain #Cannabis #InvisibleDisabilities
#GifsArtidote: like the #narcissist in my life mu$k is suffering with #grandiosity, which is an aspect of #NPD #NarcissisticPersonalityDisorder and #ASPD #AntiSocialPersonalityDisorder which I think he has at the extreme end, knowing a little about his family history
#press #educate #organise #resist #news #ablism #InvisibleDisabilities #denial #analysis #psychology
https://youtu.be/_-SDDO7zFjU?si=mJxpB0GwMyHcj9Xe
#GifsArtidote: like the #narcissist in my life mu$k is suffering with #grandiosity, which is an aspect of #NPD #NarcissisticPersonalityDisorder and #ASPD #AntiSocialPersonalityDisorder which I think he has at the extreme end, knowing a little about his family history
#press #educate #organise #resist #news #ablism #InvisibleDisabilities #denial #analysis #psychology
https://youtu.be/_-SDDO7zFjU?si=mdhmzfzqRPBzG1dF
Is anyone here attending #RareDC2025 ( #RareDiseaseWeek in Washington D.C.)?
I am unable to attend. It could be an excellent last opportunity to advocate for the protection of the #AffordableCareAct including insurance protections for pre-existing conditions. Another good ask would be to stop research funding cuts.
It is not a time for our most vulnerable folks to be silent.
#ACA #USPol #USPolitics #InvisibleDisabilities #preexisingConditions #healthInsurance #TrumpRegime #DOGE #Trump #Elon
2025-2-12 Starting imatinib for resistant mast cell symptoms.
https://www.illmarks.com/2025-2-12-starting-imatinib-for-resistant-mast-cell-symptoms/
#art #bodyHorror #bodyMapping #chemo #chronicIllness #chronicIllnessArt #disabilityArt #gleevec #glivec #imatinib #invisibleDisabilities #invisibleIllness #invisibleIllnesses #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mastocytosis #meCfs #mecfs #medart #medicalArt #MillionsMissing #nausea #pwLC #pwme #SciArt #scienceArt #tki
#disabled #disability #invisibledisability #invisibledisabilities #disabilityrights #visibility #chronicillness #chronicallyill #longcovid #fibromyalgia #mentalillness #mentalhealth #mentallyill #ptsd #complexptsd #cptsd
Well, figured out what's going on with my neck/shoulder/arm. I've been diagnosed as being in the early stages of frozen shoulder. Apparently, menopausal folks are more prone to it for unknown reasons. Yay?
So I have about a year and a half until this issue goes away, and it will get worse before it gets better. The good news is that when that awful pain happens, I'm not causing myself damage. Apparently, a cortisone shot early on will help prevent some of that pain. So will continuing to exercise regularly, although I will have to avoid exercises which bring on the pain (which is sudden and intense). Massages will also help, because the surrounding muscles will lock up from that pain.
Looks like I have a rocky road ahead of me.
#FrozenShoulder #ChronicPain #InvisibleDisabilities #menopause
