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

#disability #disabled #funnypics #disabledmemes #disabilitymemes #invisibledisabilities #chronicillness #chronicillnessmemes

#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

When I first started back at the gym three years ago, I made fantastic progress. I regained a lot of lost strength and mobility. But since I had COVID in October 2023 I have been in decline. First it was with my endurance. I went from being able to hold a >5 minute plank. A year after COVID, I struggled to hold one for 40 seconds.

Now I'm noticing a lot of old injuries have reappeared for no apparent reason. Though I haven't been doing running and jumping, my Achilles tendonopathy from several years ago has returned. My clicking hip syndrome has shown up on my good hip. The patella femoral syndrome of my youth is threatening a comeback.

And now there's something very wrong with my shoulder/neck/arm. I can no longer put on a sports bra without pain.

I find myself gripping the bannister when going down stairs. I have more frequent headaches.

I don't know if this is all related to long COVID, or if I'm just old.

I don't know what to put down for a fitness goal as I've failed every one of them for the past two years. Its disheartening, to say the least. I mourn the loss of my excellent strength and fitness.

At least I'm able to walk without exhausting myself. I'll take that as a win. There have been a few times in my life when I was too disabled to walk very much at all.
#disability #InvisibleDisabilities #ChronicPain #LongCovid #Covid #aging

Starting the day with laundry.

#DailyLabor #Homemaker #invisibledisabilities

I’m good-crying, legos have been a godsend hobby for me with #LongCovid. I am able to be visually creative and watch a thing come together even on severe brain injury and fatigue days.

https://hdsunflower.com/insights/post/the-lego-group-joins-hidden-disabilities-sunflower

#InvisibleDisabilities #Disability

On International Day of People with #Disabilities, I thought I'd share this article on #invisibledisabilities.

This individual has ME/CFS & ulcerative colitis
https://meassociation.org.uk/2021/10/invisible-disabilities-week-2021-jessica-logan/

#IDPD #IDPD2024 #IDPD24 #IDPWD #invisibledisability #Hiddendisability
#Hiddendisabilities @chronicillness
@spoonies
@disability
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#ulcerativecolitis
@ibd #ibd

The DWP is currently screwing over disabled people once more.

Because the tories screwed everyone for 14yrs, underfunded and lost countless judicial reviews where they tried to deny people things like Personal Independence Payments (PIP), they currently have a backlog of around 450,000 claims that are due to renewal.

Except they're not even bothering to do them because they're only doing 'new' claims because they've had a backlog of about 220,000 of those too.

When your PIP comes up for renewal, you have to fill out a form... the easiest way to do that is to answer all questions with 'No change since the last assessment' because the chances are that unless there's a major change to your condition or you develop a major new one, saying things are 10% worse isn't going to help you at all... they'll demand extra proof and try to trip you up, so they can deny your claim.

Best ting to do if you get it, 'No change since the last assessment'

Because if they try to deny you now, they'll lose the appeal because it was ok before, so they've moved the goalposts to try and remove people from the benefit.

They are at least continuing to pay the PIP to those people on the backlog... so they're not losing the money.

But what it does mean is that those who have a blue badge to enable free parking, or the use of parking spaces close to where they want to be... which for some people, is the difference between being able to go out, or being stuck at home and isolated.... Those badges are issued for the same amount of time as the PIP award... which has now expired for hundreds of thousands of people.

You can't get a new badge from your local council, without a letter from the DWP saying that you've been awarded the benefit for another 3-4yrs (is the normal time). They've not even issued extension letters to disabled people, so they can get an extension and replacement badge for about the next 12 months.

The backlog is estimated at 10 months for renewal claims.

That's 10 months people will be basically unable to go out for some, as often for others. Because parking in a disabled bay without a valid blue badge, is up to a £1000 fine.

I personally know people suffering with this problem.

#Disability
#DisabilityAwareness
#PIP
#DWP
#InvisibleDisabilities

Have you ever been out of spoons the minute you woke up?

Have you ever looked in the bathroom mirror first thing, only to see that your brain hung a sign across your forehead reading:

"OUT TO LUNCH UNTIL FURTHER NOTICE – KEEP OUT! THIS MEANS YOU!"

You know, the kind of morning where you're going to the bathroom and think to yourself, "If I went ahead and pissed on myself to get it over with, maybe the rest of the world won't piss on me today. Should I try to beat them to the punch?" Then, not actually meaning to, you actually do it.

It's the kind of morning when, before you even eat breakfast, your body feels like you already devoured a heaping bowl of Post-Kellogs' new Crunchy Vertebrae Cereal, with Mini Degenerative Disc Marshmallows, and a painful prize inside the box.

When you try to focus and plan your day, the only thing your brain can make out is the sound of Charlie Brown's parents. " Wha Wa Wa Wha...". Even holding the container of cat food to fill the bowl, all three cats flick their nose in the air with their paw, then turn and walk away. The outside cats moved across the street.

Then, your spouse/partner/loved one/roommate/coworker looks at you, realizing the kind of day you're having, and tells you they are there, if you need them. Even with all the love in your heart, your mouth still says "I know that you're here for me. Now go away please."

I'm calling this phenomenon Wednesday.

#Spoonie #disability #InvisibleDisabilities #fibromyalgia #TBI #ADHD #ChronicPain #humor

Thinking of Lois Curtis today and remembering her resilience and determination. She is deserving of every person's respect. If you don't know who she is, take some time to discover.

“To The Brave And Strong: Lois Curtis” https://outofexileidr.vivaldi.net/2024/11/03/to-the-brave-and-strong-lois-curtis/

💚 If you like my work, please consider buying me a coffee on ko-fi: https://ko-fi.com/outofexile_idr

👉🏼 View my other work or send support via stripe here: https://outofexileidr.vivaldi.net/dona

#disability #ActuallyAutistic #InvisibleDisabilities #ADA #MentalHealth #freedom #community #resilience #LoisCurtis #InvisibleDisabilityRights

@disabilityjustice @disability @disabledvoices @actuallyautistic

When I was a little kid, I fell down a lot, and it wasn't because I was clumsy. I remember going to school and being confused by how all the other kids could run quickly and not fall down. My knees bonked together. My left foot turned inward so that I tripped over it all the time.

I wore orthopedic shoes throughout my early years to correct it. I never kneeled back to sit on my feet because that made matters worse. My doctor caught me doing it once and slapped me, saying I must never sit that way.

By the time I was in grade two or three, I could walk fine. But then I went through a massive growth spurt in grade five which wrecked my knee cartilage. I didn't run because it hurt.

In grade six, my teacher called me lazy because I was so slow at running. In grade seven gym class, I was the slowest. My teacher scolded me for running more slowly than the kid with crutches and a broken leg.

By the time I was in my teens, I ignored the pain and ran everywhere. My knees were black and blue and swollen, but I ran anyway. I just couldn't squat without awful pain, and even the lightest tap on my knee could drop me.

I never got over the knee pain until I started martial arts in my late 20s, and then I had massive foot pain. My right foot has been swollen since 1999. I once spent an entire month not putting weight on that foot to see if it would help. It didn't. My swollen foot is 1.5 sizes larger than the other foot, which makes getting good-fitting shoes difficult.

And in 2012, when I was a professional dancer and a competitive athlete (weightlifting and cross country running), my hip had a massive flareup. Ends up the hip issue is congenital and was what caused my foot issue as a little kid.

I was afraid I'd never be able to walk properly again, let alone run.

I got most of my mobility back, but then I started having issues with my SI joint, also caused by the hip thing. And then I got Achilles tendonopathy.

I have almost always looked fit and strong, but have been managing invisible disabilities all my life. And I haven't even touched on my neurological, GI tract, dental, vision, PTSD, or respiratory issues.
#InvisibleDisabilities #disability #mobility #ChronicPain

If you're disabled, and you only consider and accommodate people with your particular disability, you might be an ablest... Strike that, you are! I'm not always Pollyanna, sometimes I'm Oscar the grouch. Please don't take the lid off my can.

“With Gentle Affect – Surviving Trauma” https://outofexileidr.vivaldi.net/2024/11/02/with-gentle-affect-surviving-trauma/

#DisabilityCommunity #disability #DisabilitySolidarity #CPTSD #ActuallyAutistic #ADHD #InvisibleDisabilities #InvisibleDisabilityRights
@actuallyautistic @disabilityjustice @disability