What people don’t realize is that even prolonged use of mobility aids can disable you further (not the way the Ableds think).
Like I’ve been displaying signs of arthritis in my hands and shoulders since I was 25 because I started using crutches at 5.
Things you shouldn’t say to someone who has chronic illness.
"People your age don't get that sick”
"It can't really be that bad”
“You are just being dramatic”
“If you just stopped thinking about it, it would go away”
What else do you hate hearing?
Just a reminder that disabled people need rides to go grocery shopping, doctor’s offices, to the bar, to the cafe—not just to cast a ballot that impacts you.
Due to recent events, the members of the Chronically Ch(ill) Podcast will be taking an undisclosed sabbatical to regroup.
We promise we won't be gone for too long!
Until then, everyone be safe and be blessed! 🙏
Today is International LGS Awareness Day™! 💜
Join us as we shine a light on #LennoxGastautSyndrome (LGS), a rare and severe form of #Epilepsy. By spreading awareness, we can support families affected by LGS and work towards better treatments and understanding.
#NeuroTwitter
It has now been 16 yrs since being diagnosed with #epilepsy. Being diagnosed later in life was a shock and also a challenge I wasn’t ready for. I love being able to help others learn more about epilepsy because I’m still learning as well. #EpilepsyAwarenessMonth 💜✨💪🏾#letsdothis
youtu.be/8bCG8vfc-EE?si=B4PH…
Episode 3 of The Chronically Ch(ill) Podcast is here!
“Me, My(self-advocacy), and I” can be watched now on YouTube!
Hope you enjoy! 💜🗣️🎙️
Controversial opinion (apparently):
Disabled people should be able to afford luxuries on top of just surviving. A new phone, clothes, the chance to go to a concert, etc. We deserve to live. Not just survive.
“I think the most frustrating part of living with fatigue, is that people don’t get it..But my body doesn’t work like that, sleeping does not give me energy back, I don’t wake up with full energy again": buff.ly/3TnIh6z by @bloomingmindxx#ChronicFatigue#InvisibleIllness
.Our volunteer Dave, recently had a video telemetry stay at the Clinical Neurophysiology Department, Royal Infirmary in Edinburgh. He kept a diary of his experiences.
You can read part one of his diary on our website: buff.ly/3Yqi8r7#VideoTelemetry#EEG#Epilepsy
A number of HCWs responded to my post about masking and said they WOULD mask but have been instructed not to because it scares the patients.
This is why we need good public health information. We need people to understand that someone in a mask is NOT a threat.