Well I tried. That's all any of us can do. really hoped it would work out but being in assisted living made the seizures much worse. It culminated in trying new medications which caused a reaction and a bad fall which set off a series of seizures. And then more seizures a few days later. … Continue reading Moving home
Behind Grey Curtains Behind grey curtains, Breath, damp as Fall mist, Creeps across flayed limbs. Pain pearls on parchment lips, Kissed dry by love from a once-before life. Now minutes become years, Years become moments. The immovable hands of an invisible clock.
I just had to make a big decision as to wether to stay in Assisted Living or move back to Galiano, and my tiny house. It's been really hard to know what to do. On the one hand, Ayre Manor in Sooke is a great property with beautiful trees and lovely grounds and nice bright, … Continue reading Assisted Living and ME 2
Well, it's been a long time since I've posted here. Twitter became an easier place to post for a while. Less personal more prosaic. During that time I advocated successfully for a place in Assisted Living and moved in two weeks ago to a community in Sooke: Ayre Manor. It's a little over 500 square … Continue reading Assisted Living and ME 1
After several video posts and an open letter to Vancouver Island Health Authourity; regarding access to Assisted Living, and accessible housing, social supports, and healthcare, I finally heard that after appealing a second time with a new Assessment of my circumstances, I've been accepted for Assisted Living! Amazing news, although it may be months before I get a place. Thanks for the support - will keep advocating for #pwME around access to healthcare, housing, and social supports and asking @AdrianDix 'What about ME?'
The CBC kindly ran a piece on my situation yesterday. It ran on CBC Radio Victoria and also online.https://www.cbc.ca/news/canada/british-columbia/severely-ill-galiano-island-woman-turned-away-from-assisted-living-due-to-unscheduled-care-needs-1.5204759 Special thanks to Adam van der Zwan for all his efforts and hard work on the story and to ME/FM Society of BC, and Dr Mohamed Gheis for their contributions.. hopefully this will help others struggling … Continue reading CBC News
There are 600,000 people with Myagic Encephalomyelitis living in Canada. We have the highest instance per capita of any country in the world and yet most of the Doctors and Specialists I've seen don't even believe it's a real disease. I am just one of #MillionsMissing all over the world. In Canada, things are particularly bad, with regards to lack of treatment and almost $0 research investment into causes and cures. It's not OK that we are ignored and denied the same standards of healthcare, or accessible, supported accommodation available to Canadian's with other illnesses. People with ME/CFS are effectively ignored, and left to manage alone. We have no Health Canada protocols for this illness. No research into causes and cures, and many left housebound and bedbound. Vancouver Island Health Authourity has no official protocols for patients with this illness. Nor for providing the same standards of social supports or housing supports available to people with other illnesses. It's totally unacceptable.
just one of the approximately 600,000 people in Canada living with Myalgic Encephalomyelitis (ME/CFS). With no education medical schools or universities about this illness and no money for research; no treatment protocols by Health Canada either, so I'm asking a serious question to Vancouver Health and Vancouver Coastal and all the Health Authorities and Health Canada - What about ME?
Part of the ME/CFS week of action and awareness building - will be posting more on the fact that 600,000 Canadians live with this illness and the impact it has on our lives. With no training for Doctors and Nurses, $0 research funding for causes or cures, let alone treatment protocols from Health Canada, or even at local level. I will be posting more on this issue soon.