Assisted Living and ME 2

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, Sunny, spacious suite, and the staff are all great. It’s close to amenities etc.

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On the other, being here has meant giving up the privacy, independence and peace and tranquility of living on Galiano in my small space. It’s meant leaving my friends, and daily home support, plus family doctor, counselor, and a close-knit community of people for the most part, I admire, respect, and love very much.

When Assisted Living was suggested as an option, it sounded ideal but like everything, there are positives and negatives. Unfortunately for younger folks, Assisted Living residences are mostly set up for people in later stages in life. With that comes certain things not conducive to living with ME

For example everything is really brightly lit, and lights are on all the time. Common areas are particularly loud with TV and media on at high volume day and night. The lovely care staff are used to clients in their 80’s, with hearing and vision loss, not clients in their early 50’s with several contentious, and unpredictable illnesses, including seizures.

I’m finding it’s all too much to handle: the lovely suite is so much bigger than I’m used to, so I get more tired, and can do less. The common areas are bright and noisy so when I spend time there, it causes more symptoms and seizures.

I feel like a fish out of water and it’s nobodies fault; it’s this awful illness that makes something like the smell of someone’s soap cause migraines, or talking for 5 minutes in the common room trigger s seizure, or an allergy to something in the food. Of course some of this is the crash one would anticipate from moving, except it’s getting worse the longer I’m here. Have to be honest, I’m pretty gutted and unsure what to do. I had such high hopes that this lovely building would give me the peaceful environment I need to stabilize a bit

It seems that’s not going to be likely. Anyways I decided to stay another month and see if things improve – hope so! Didn’t have the courage to make a change again so soon or want to be too hasty so here now til the beginning of 2020, unless something changes. Hopefully will adjust to the sensory bombardment and community living better. It’s really much harder than anticipated and it wasn’t as if I thought it would be easy – just thought it would be a slower paced more peaceful environment, but it’s busy and there’s lots going on.

If you’re looking for somewhere to send your folks for more support, this is the place. Really. The staff are amazing. But for me, and M.E. it’s too busy, and not sure I can adjust to the stimulation without another severe crash and burn. So far my seizure activity has been increasing from the over stimulation, and PEM (Post Exertional Malaise) really bad too. Fingers crossed this month will be easier. Thankful the staff here are so kind but hard when no one really has a clue about M.E., or Fibromyalgia, let alone a Pineocytoma! Why would they when most of the doctors don’t either?

I probably should just go back to Galiano. Think the pace of life is sadly about all I can manage, even on my best days, and I really miss the community there. People who have offered kindness and care, and friendship. Those are the things that really matter, and losing them definitely affects the health negatively as well as the mood. I’m grateful for many things. For the opportunity to even have this option, after only 20 years of living and working in Canada. It’s a beautiful facility too. Really friendly staff. Just such a big difference from my beautiful Tiny Home on that very quirky, and deeply, and joyfully insidious island, called Galiano!

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

Did you have a Happy Canada Day – What about M.E.?

Took this video last Friday, just before the Canada Day long weekend, which I spent mostly in bed, recovering from another serious episode.

Watch my video to find out more about myself and the 600,000 Canadians living with the devastating illness, Myalgic Encephalomyelitis.

I’m asking specifically about lack of affordable, accessible housing and lack of appropriate care for people with #MyalgicEncephalomyelitis.