Don’t give up!

An emotional weekend – received news late Friday evening that my appeal to Vancouver Island Health Authourity for Assisted Living has been approved! Yay! Can’t quite believe it!

So, one step closer, and now on the waiting list, until a suitable place becomes available…With 3800 new beds needed on Vancouver island alone, it might be a long wait.

I am really grateful to Island Health for being prepared to review my case with fresh eyes. And most of all, I’m grateful that it means my future feels a little more secure, and safer than it did, knowing I will be in supported, subsidized housing.It means I can retain independence, and dignity, and still live an authentic life as me, with my ME!

I’m very privileged to have this opportunity, and I know it. My background in communications was of help but it was never just about my situation, I was advocating for others with MEcfs.

This process has lit a bit of a fire in my belly around the issues of accessing basic health, social and housing supports, for people with MEcfs, so I’m going to keep advocating for people with ME and other Chronic Illnesses.Please, if you live in Canada and particularly BC, and have ME or other Chronic Illnesses and are having similar issues, being denied access to appropriate healthcare, social supports and housing, get in touch.

I’d like to hear your story.I have to say huge thank out to my case manager Andrea, and also thanks to Elizabeth Sanchez of ME/FM Society of BC, MillionsMissingCanada, Dr Mohamed Gheis for their help and support and also huge thanks to Adam van der Zwan at CBC for doing such a stellar job on that news story

CBC News

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 to find accessible housing and appropriate treatment for their ME or other Chronic illness – don’t give up. Keep fighting!#pwME, #MyalgicE #MyalgicEncephalomyelitis

What about ME?

I have been turned down for Assisted living again, due to my ‘unscheduled care needs’, which means my seizures, and neurological symptoms. So what am I and hundreds of thousands of Canadians like me supposed to do?
We have no medical treatment protocols available, and most Doctors don’ even believe Myalgic Encephalomyelitis is a real illness.

I’ve had 12 or more seizures since Wednesday afternoon, and the medications aren’t working, so it’s been bloody awful and rather messy few days. Thing is, I’m not special in this – 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 Island Health Authourity, and Vancouver Coastal Health Authourity, in fact, ALL the Health Authorities, and the Premiers of ALL the provinces, and territories across our country, as well as Health Canada, and our Prime Minister, Justin Trudeau. Asking on behalf of the 600,000 Canadians suffering – What about ME?