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.


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!

Deep Midwinter

Here’s one of my favourite pics of my little home, taken just a few days ago after the second big snow storm, of three, in a week.

It makes it look so cosy and I love the contrast with the white of the snow against the rusted patina and teal roof.

Thankfully, it’s easy to keep a home this size warm with my Cubic mini stove, plus the southerly exposure means even 20 minutes of winter sun warms the place nicely.

Propane tanks and regulators keep freezing so the hot water has been very sparse, but otherwise it’s been rather lovely

Second Chances

I got a dog. Her name is Willow. I got her for companionship and maybe if amenable, train her to fetch things I’ve dropped, or my phone if needed when I’m having an episode; having been told she was a great retriever and very smart and easy the train.

Willow is an older Cocker Spaniel, Poodle cross. More Spaniel than poodle (thankfully); Overweight, bad teeth, and apparently a bad attitude! Seems like Mr X from Craigslist wasn’t entirely honest about why he was re-homing his dog. Quelle Surprise!

I knew something wasn’t right before we met from the replies to some of my questions – ‘Buddy’ didn’t have a vet for her, and said she’d had no need to see one as had no issues. Then when we met up, it was immediately apparent how much pain she was in. And she looked so sad and miserable, clearly couldn’t stand the sight of the guy; there was no way I could leave her there, so here I am with an elderly Cockerpoo, with bad breath, trust issues, and a lousy attitude.

Except she doesn’t! She has a great attitude, it’s just some asshole didn’t bother to pay attention or respect her boundaries or treat her right, so she learned to bite first, ask questions later.

I kinda know how she feels: Life can do that to you, and so can a bad relationship!

Plus, it turns out she was riddled with fleas, worms, ear infections, periodontal disease, and obvious pain with her hind legs.

RestQ Animals Sanctuary, and the wonderful Dr Elisabeth Jahren tomare helping me with getting Willow all fixed up, or at least that’s the plan. The trouble is she’s a biter!

Most dogs use biting as a last defence. Not this girl! She learned to do that as a way of survival, so I can’t blame her for it, but it’s hard to deal with when you’re not sure what the triggers are, and there’s no advance notice.

She’s gone for me a few times now, but only drawn blood once! Saturday she went for my face, which wasn’t cool, and I wasn’t sure I could have a dog like that in my home, especially with my seizure episodes. Professional Recommendation was euthanasia.

I relate to Willow though, being a bit on the gimpy side, having a few eccentricities and being quick to react myself. It’s the PTSD.

Looks like we both have it….Had to laugh, the other day; Willow and I were hanging out on the rug in front of the woodstove. I was doing some gentle Hatha poses to ease my fibro’ pain and Willow often tries to copy what I’m doing, which is very endearing.

So, it’s feeling all warm, and gentle and harmonious, and then from nowhere there was a big bang, from somewhere close-by, and we both lept out of our skins, and then looked at each other and kind of grinned, sheepishly, acknowledging our embarrassment at our shared jumpiness…It was pretty hilarious!

Anyways, I’m giving her a second chance. Actually, I think it’s her fifth or sixth chance by now, but things are improving a little at a time. Baby steps. Some days are better than others, but she’s trusting me more, and I her.

I bought her a muzzle, and we practice with that a couple of times a day, with lots of treats etc, but she hates it, and I feel like a monster for putting it on her, although I do feel slightly safer.

Realistically, there have only been half a dozen incidents in total in just over a month, and after the last one on Saturday, the look of anguish on her face when she realized what she’d done. Well, lets just say, I’m praying that I’m not just being anthropomorphic and she really did get it because she’s got a cushy life here, and ultimately, I’m all she’s got….

And vice versa!