Got my postal vote for upcoming referendums in Ireland, so I thought I would remind people of this option for future votes (it's too late for the referendums).
"To explore experiences of patients who have complex chronic conditions, such as #fibromyalgia & #chronicfatiguesyndrome, when they request medical assistance in dying (#MAID) in Canada"
An emeritus professor Edzard Ernst who has focused on researching Complementary & Alternative Medicine takes a sceptical look at an Ear Acupressure Device that has been promoted for ME and other conditions
My scooter doesn’t have a tight turning circle so using it on a bus is a lot harder than my powered wheelchair but after my lesson today I feel confident enough using it on buses 😀
STAT Meghan O´Rourke on a medical system not built for #chronicillness - and the 'invisible kingdom' that could spur change
Interview with Megan O´Rourke, journalist and author of the book "The invisible kingdom". She talks about society's resistance to #chronicillnesses and the need for recognition and investment in these conditions.
"My doctor signed it without question. I still was not comfortable with the term “disabled” then and I was still trying to pretend I could physically do what I was longer able to do. “Passing” as able-bodied was significantly easier than trying to live with disability (or so I thought at the time), and I was coasting on denial as long as I could."
"1. Most #disabilities and #chronicconditions are invisible. Often, you cannot “see” kidney disease, cognitive disabilities, neurological conditions, cancer, prosthetic limbs, etc. All of these and more qualify as disabilities, and these individuals are allowed access to a disabled placard to make their lives and the world that much easier to navigate."
"2. “My housework falls behind, my washing falls behind, my sorting of things and objects falls behind. I want to have a clean and tidy house but find that dumping things in piles has been the only thing I can do now. I’m constantly tired of battling a fight I don’t think I’m ever going to win.”
“Some days it takes all day to get enough energy to shower, so around 3 p.m. I start to get terrible anxiety thinking someone will come to my door and think I’m lazy or dirty because the laundry is on the sofa, dishes in the sink and I’m unshowered and in bed in the middle of the day!”
"7. “I’m in more pain than someone could even imagine. I wouldn’t wish this pain on my worst enemies. I don’t like to complain to those around me because if I did, I’d be complaining 24/7 and I don’t want to be ‘annoying’ or ‘a burden’ to anyone.”
“I’m on the verge of losing it at everyone because everything seems so loud, like it’s way louder than normal. And it’s so annoying it makes me angry. Like even someone drinking a drink seems like they have megaphone at their throat.”
“I’m often so tired that even taking a deep breath is exhausting. I will even put off going to the bathroom for as long as possible because just walking the few feet from my couch to the restroom feels like walking a mile. My whole house feels like it triples in size on my bad days and everything is so far away.”
“Having two big days in a row wipes me out, and I need a quiet day with little interaction, which is hard for my son to understand as he just wants to talk to me.”