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

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?

Can you see ME now?

Part of the ME/CFS week of action and awareness building – will be posting more on the fact that 600,000 Canadians live with this illness and the impact it has on our lives. With no training for Doctors and Nurses, $0 research funding for causes or cures, let alone treatment protocols from Health Canada, or even at local level, we are just some of the #MillionsMissing with ME/CFS.

Supreme Collective: Passion for Compassion!

You may or may not know, but I use medical marijuana as one of my main medications. And I use it daily, in a variety of forms, from pure CBD, (one of the more powerful cannabinoids for pain seizures and sleep but with no psychotropic properties so won’t get you ‘stoned’), to full spectrum oil, vapes, to edibles, topicals and sometimes I even smoke it! (for appetite stimulation, and breakthrough pain).

It’s my primary medicine, along with a couple of pharma meds, and has the biggest effect on the most symptoms, managing my severe pain, seizures, nausea, migraine and insomnia more effectively than anything else.

Trouble is, it was hard to find good quality, medicinal-grade marijuana at the best of times but even more so now recreational marijuana use has been legalized in Canada.

While I’m thrilled that Canada has made this powerful medicine, and relaxant available to everyone of legal age; it has undoubtedly made it much harder for medicinal users to access clean, medicinal-grade, affordable, cannabis because there are SO many more people buying.

Despite the fact there are literally dozens of new online stores, opening to to fill the gap created by the lack of physical stores. It’s still hard to get premium quality because like everything, not all of these online stores are created equally. Indeed, many of them have nefarious connections, and don’t offer the high quality, medicinal-grade cannabis that sick people REALLY need.

I was using one particular company for the last 18 months before legalization because I found that their productd were consistently of high-quality. However since legalization, the inventory and quality dropped, the prices have gone up, and the quality of service has gone down.

So, that left me hunting for a new supplier. I tried a couple of companies, but found many of the products were not as described on their websites. Often Cannabis oils are processed using solvents and petrochemicals like ethanol, butane or propane, none of which are desirable for medicinal use.

Anyways, after several months and several disappointments, I am thrilled to have finally found a supplier that I can trust, and recommend to other people…

supreme collective, Medinical Cannabis, Cannabis, Marijuana, Medicine, Healing

The Supreme Collective website carries the cleanest, purest, medicinal cannabis products I have found online anywhere! They work with cannabis ‘Artists’ – People at the very top of their game,; producing exquisite cannabis and CBD oils, edibles, concentrates, tinctures, and topicals; as well as premium grade flowers and hash. But it’s not just the quality of the products that sets this company apart; it’s their ethos, and a true passion for compassion, with a dedication to providing the highest quality products, with the best possible support that sets them apart..

Supreme Collective made it so easy for me to find the right products, and offered meaningful advice, with specific recommendations for products to help ease some of my most problematic symptoms, like my seizures and dysautonomia. They even gave me a some products to sample, and the shipping was fast.

One of the things that most impressed me is that Supreme Collective really recognize the responsibility they have to educate, inform, and support cannabis users to make the right choices; ensuring novice and experienced folk alike, understand how to safely experience this beautiful, powerful plant.

So, if you are looking to purchase premium, medicinal-grade, cannabis products in Canada; please do yourselves a favour and check out these guys. You will be well taken care of, and get the very best service, and products on the market, bar none.

I personally recommend the following from Supreme Collective as they helped my severe pain, neurological symptoms, myalgia, migraines, and insomnia, and for medicating without smoking, which is obviously the healthiest way to achieve medicinal effects from this wonderful plant:

Pure Pulls Vapes with Full Spectrum Oil

Pure Pulls Jack Therapy Vape Pen

Element 3:6:9

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!

My Happy Place

There are few things that bring me more joy than being able to spend some time (or even eat!) ‘al fresco’.

Today, I’m dog-sitting too, so that’s an added treat, and although exhausted after a couple of hours, my canine companion is continuing to enjoy the ambience on my behalf!