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 immoveable 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
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 …
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.
One of the things that has really hit home since I got so sick is the issue of accessible and affordable housing for people who have Chronic illness and disabilities. I am very lucky because I had already built the tiny house, when I got really sick, and was inhabiting it, so while it's pretty … Continue reading Housing for People with Chronic Illness