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 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

Open Letter to Vancouver Island Health Authourity: What about M.E.?

600,000 CANADIANS LIVE WITH THIS DEVASTATING ILLNESS AND NO MEDICAL SUPPORT

I am just one of #MillionsMissing all over the world. In Canada, things are particularly bad, with regards to lack of treatment and almost $0 research investment into causes and cures. It’s not OK that we are ignored and denied the same standards of healthcare, or accessible, supported accommodation available to Canadian’s with other illnesses.

There are 600,000 people with Myagic Encephalomyelitis living in Canada. We have the highest instance per capita of any country in the world and yet most of the Doctors and Specialists I’ve seen don’t even believe it’s a real disease. I’ve posted before about this issue, and shared to twitter before; tagged VIHA, who didn’t respond until almost 3 weeks after the original post, and Vancouver Coastal who eventually did, to empathize and share with VIHA.

Empathy won’t get me very far when I’m seizing on the floor!

People with ME/CFS are effectively ignored, and left to manage alone. We have no Health Canada protocols for this illness. No research into causes and cures, and many left housebound and bedbound. That’s NOT acceptable. Vancouver Island Health Authourity has no official protocols for patients with this illness. Nor for providing the same standards of social supports or housing supports available to people with other illnesses. It’s totally unacceptable.

My case manager applied for Assisted Living 4 times and was declined each time by both VIHA and Vancouver Coastal. They say I am not eligible due to my “Unscheduled Care Needs”, which means I don’t fit neatly into their narrow criteria, due to the neurological symptoms, so they send me home and leave me to deal with it all alone.

This is my response to be declined again for Supported Housing/Assisted Living

An Open Letter to Vancouver Island Health Authourity.

My name is Jemma Lee, and I currently live alone on a small Gulf Island in a 240 sq ft Tiny House. I have lived here for almost 8 years. My closest family are in Toronto but most are in the UK. I have no children and no partner, so no-one to turn to for help, except my local GP, Community Care Nurse, and home-support for one hour per day.

I have several severe disabilities, and health issues; which include a Seizure Disorder, Pineal lesion, ME/CFS, and Fibromyalgia, as well PTSD, Orthostatic Hypotension, Sinus Bradycardia, Osteoarthritis, IBS, interstitial cystitis, and Dysautonomia, caused by the ME/CFS and brain lesion. I have vision problems, migraines, and problems walking.

For these reasons, I am on PWD disability, so on a very limited income. Because I have variable mobility issues, I use a variety of mobility aids to get about. An application for a small power-chair was just approved. The chair will give me more mobility and security, and allow me to be more independent.

My cabin on Galiano has a composting toilet, and mini-wood-stove for heat, and is well laid out. However, I need to chop wood for warmth, don’t have access to treated, filtered water, and have to empty and manage the the composting toilet, etc. All of which is now completely impossible. Most days I cannot prepare food, and  do the dishes, take a shower, let alone properly manage my chores and housekeeping, even with one hour of home support services daily.

The issues which have caused me to be declined Assisted Living applications are my “unscheduled care needs” by which they mean the Neurological symptoms I experience, which include a Functional Seizure Disorder, caused by the ME, and the Brain Lesion. The symptoms include Myoclonus, and Dystonia but also focal and full seizures. Last year I had 140 days of seizure activity of some kind. Over half of those days I had more than one episode. This year things are a little improved due to medication, but variable. In May I only had 8 days, whereas in June, I had 12.

Living alone puts me in a very precarious and dangerous situation. I fall frequently as part of my episodes but also because I have very low pulse and blood pressure, also caused by the ME. Its really imperative that I move somewhere ASAP because my health is getting worse, partially due to the physically harsh and demanding living situation, but mostly because I cannot access the support services I need; like occupational and physiotherapists, massage, acupuncture, social worker; and ALL of my many Specialists.

It is very hard to attend appointments in Victoria as it requires someone to drive me as a ‘medical escort ‘because I am unable to travel unattended. It takes all day traveling from 6am to 6pm for a 20-30 minute health appointment. That then causes a worsening of symptoms for several days. Bottom line, I need to be living somewhere more support but also where I can maintain independence so I can maintain some privacy and dignity in my life, and still do the things I enjoy doing when health allows.

At the end of 2018 I became a patient of Dr. Mohamed Gheis and he has a specialist Neurological Rehabilitation program in Victoria, which I cannot attend because the traveling is too exhausting and physically unsustainable. He has written a letter of support for my urgent need for supported/subsidized housing or Assisted Living in Victoria.

Andrea Hamilton our Community Nurse on Galiano Island (who is my case manager); my Family Doctor, Erin Carlson, and Dr. Mohamed Gheis, all feel that I need to be in Supported Independent, or Assisted Living in Victoria/CRD area, so that I can access health resources including treatment program at the newly opened specialist neurological rehabilitation clinic run by Dr. Gheis: as well as have access to all the other specialists, and healthcare services that I need on a regular basis. Plus I previously lived and worked in Victoria for 10 years, and have friends, and know the city well. The transit services in Victoria would be very easy to navigate with the power chair.

I appeal to you to RECONSIDER my application for Assisted Living or work with me to find a solution to this crisis situation, especially given that I am at such severe risk from injury due to the quantity and severity of my Neurological episodes, and living on my own. My deterioration means at some point something really bad will happen unless I get into some kind of supported housing or Assisted Living and access to the treatments I need.

That is surely not helping my health improve, and cannot be cost effective for the Province in the long-term; It certainly isn’t sustainable. You are the only ones who can make this decision. PLEASE HELP ME!
In Desperation!

Jemma Lee

 

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?

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

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!

Tough Decisions

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Tough decisions today. The Community Nurse and I submitted my application for off-island Assisted-Living Accommodation; something I once believed wouldn’t be a consideration until much later in life.

Trying to manage with severe health issues for the last three years has been really hard. I’ve been mostly housebound, and spend a large amount of that time bed-bound. Starting Home-care recently made a big difference, but since January, I’ve been having a substantial increase in seizures like epsiodes.

It was just partial episodes to begin with; starting back in 2015, and I didn’t even know they were a kind of seizures until January this year, but now I am having full episodes, with a significant increase in severity, and frequency. It’s been really challenging to manage those alone, especially with no family close by. Home-care has really helped, but it’s not enough.

Galiano is literally paradise on earth, and eminently suited to Small Living, and the Tiny House lifestyle, except if you have chronic, life-changing, health issues. Then the lack of infrastructures, and amount of effort you are physically spending just to have firewood for warmth, or water to bathe, or drink; or emptying the composting toilet and you realize that your so called healthy, ecological, lifestyle is actually exacerbating the health issues, and making you sicker. Then, no matter how much your heart is breaking, or how loudly your soul shouts, “NO!”, you have to make changes….

This island has become one of my greatest Loves! The community here supported me from the moment I stepped foot on this sacred ground (I defy you to argue with me on that one!), with an astonishing amount of love, generosity and compassion. It has really meant EVERYTHING to have that support, and feel that generosity, and compassion of spirit. I have not always shown my appreciation as much as I should or in the right ways, mostly due to being too sick, and overwhelmed to follow up with everyone in the way I’d have wanted. I’m sorry for that, and for anyone who felt their support wasn’t appreciated. It was, and is.

My choices for where to go in Assisted Living include: Salt Spring Island, Victoria area, and Chemainus on the one side, and Steveston, Richmond, South Vancouver, and West Vancouver for the other.

As for the Tiny House? I’m not sure! My deepest hope is to be able to keep my home here, and return for holidays and retreats; as my health allows. However, I’m also open to selling to the right person, or a co-ownership set up; which would allow me to return and remain connected to my home, friends, and community, here on Galiano.

It will be a few months before I get somewhere off island, maybe longer, so in the meantime, I will still be in my little home, savouring every last moment and detail of being here. Hoping to see all my island friends in person to say ‘Thank You’ before I go.

With gratitude to the Creator, and Nahanni, for bringing me here, and to this entire community for the laughs, the Love, and the lessons!

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