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
Woke early this morning, the moonlight beaming through the east windows of my little home, not long before the Sun rose through the misty morning in almost the same place. Sitting outside for a few minutes, feeling the still hazy sunlight warming against the damp, I glanced towards the sun to witness this beautiful sight … Continue reading Moonbeams, Sundogs & Rainbows
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
One of the most informative, easy to access videos on ME/CFS that I've seen. It's only 7 minutes long. In Canada, there are almost 600,000 people living with this devastating illness. We are mostly invisible because we only leave the house when we are well enough to do so. For many people, it can be … Continue reading Watch ME!
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
At my vets behest, tomorrow first thing, my Willow is going over the rainbow bridge to that great wilderness in the sky, where she can chase balls and raccoons and wallow in mud to her hearts content. I'm sad that I couldn't do more. Goodbye Old Girl. <3
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
To my fellow Canadians with M.E./CFS: Are you also single, and/or without family or carers? Do you have difficulties being taken seriously by your doctor's or specialists? Do you have challenges accessing appropriate treatment, and healthcare? What about accessible, affordable housing? If so, and you feel able to share a little bit about who you … Continue reading Reaching out …