Assisted Living and ME 1

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 feet with a balcony. All of the 25 suites are wheelchair accessible, and there are charging stations outside every front door.

The care staff and management are wonderful, and the suites are bright and airy, with kitchenette, including microwave and fridge freezer however, no cooktop or ovens are allowed, and any other devices must have an automatic shut-off.

Also included are living room, small balcony, good-sized bedroom, walkthrough closet and spacious bathroom, plus other storeage.

My view faces a dense coppice of mixed deciduous and evergreen trees, a hummingbird’s nest in the cedar right outside my bedroom window.

In the evening one can see the sunset over the rooftop, and it’s a nice large property with attractive landscaping, so there are many many gifts and advantages to being there, but my heart is heavy and I deeply miss my home.

So much so most days have started and ended with tears. Hard to manage moving at the best of times but while sick, it’s extra hard on the body.

This weekend I came back to Galiano for Thanksgiving and a friends birthday, conveniently combined. Of course, I wasn’t sure if I would even be able to manage the dinner, out, in a restaurant, with lots of people, but amazingly it went well and a great evening was had by all. Of course Tuesday and Wednesday I could barely move but it was worth it!

It’s been really lovely being back home on Galiano. Even after two weeks, it feels different to be here. I hadn’t realized how detached from nature, and the environment we all are when we live in condos, and houses, and towns, and cities.

It’s very different from living in a 24 by 10 ft cabin on wheels, close to the ocean on a wild, windswept, little Island.

Here you know it’s going to rain long before it does, because you just feel it. And when those first rain drops hit the roof; the first little pitter-patter, so soothing and soft which soon intensifies into a rhythmic pounding, like a heartbeat, raining down upon my head, and there is no feeling cosier, of safer, or more exquisite in that moment, than lying in my bed, tucked under my oversize duvet, listening to that tympany of tears on the metal roof outside.

I feel you Mother…. I’m crying too!

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