Moving home

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. In fact, over 33 since I left my cabin on Galiano, and that’s 3-4 times as many as before.

Just got the X-rays back. Turns out I’ve got a compression fracture from the fall. Yay!

Anyways, I’m grateful for the opportunity to try assisted living. If I were able to be more social and manage more stimulation, it would be perfect. It’s a great facility on beautiful grounds, and the staff are lovely. It’s just not ideal for someone with severe M.E. or a seizure disorder.

I’m glad I tried because otherwise I’d never know but sure am glad to be home.

Happy Holidays One and All! ❤️

Moonbeams, Sundogs & Rainbows

Sundogs, rainbows, Myalgic Encephalomyelitis, Galiano Island

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 of a sundog rainbow.

Today I am so grateful for those brief moments of joy. Something to focus on, instead of the fear, pain and exhaustion. They sustain me when nothing else can.

Behind Grey Curtains

BehindGreyCurtains

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.

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!

Watch ME!

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 years before that happens.

25% of all people with ME are bedbound or housebound for the majority of their illness.

1https://youtu.be/qvagqgJSy5I

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!

Goodbye my friend

My dog, Willow, is being euthanized tomorrow. She came as a real mess from abuse and neglect. Flea and worm infested, ears infected, teeth rotting in her head, bad knee injuries from long ago, and some kind of neurological disorder (Join the club!). And she came with a bite first, ask questions later attitude, due to her abuse. Not an easy dog to care for, especially with ME, and a seizure disorder.

Really tried hard to make her life as healthy and happy as possible but she is still unpredictable, and biting, and lately, clearly in a lot of pain. So, at my vets behest, tomorrow first thing, 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

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

Reaching out …

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 are, and where you live, and how you cope, I’d love to hear from you.

I’m interested in finding out more to see if we can’t lobby the powers that be to improve things for those of us living alone with #MyalgicE.