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.

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?

Housing for People with Chronic Illness

One of the things that has really hit home since I got so sick is the issue of accessible and affordable housing for people who have Chronic illness and disabilities. I am very lucky because I had already built the tiny house, when I got really sick, and was inhabiting it, so while it’s pretty rustic, and a demanding lifestyle, I have this place, and it’s my safe-haven and my sanctuary. Don’t know how I could afford rent on my income. So what happens when your symptoms become so severe that it’s not wise to stay in your current situation? What do you do?

The community nurse and I have tried several times to get me a place in Assisted Living, as last year (2018) I had 140 days of seizures, with many days more than one episode. Over 50% of those days had more than 4 episodes in one day. The Assisted Living Assessors tell me that I am TOO sick for Assisted Living due to my ‘unscheduled care needs’ (Think they mean my seizures), but apparently not too sick to continue living alone in a partially off grid cabin with no flushing toilet, in a place with no hospital, pharmacy or bank. No transportation, or even street lights. Many days I don’t have enough energy to chop wood for heat, or cook and prepare healthy food for myself, or if I do push myself into the ground doing all the chores that need doing, I have a massive ‘crash’ caused by the exertion, making my symptoms 100 times worse, and spending days or weeks in bed recovering. (I kid you not!).

It’s pretty messed up. Last week I had a seizure so powerful it broke 3/4 of one of my back molars off, and another day I fell and hit my ear and head on an oil radiator. But apparently, it’s safer for me to stay living like this than in an Assisted Living apartment with food, personal supports and home-care provided as needed! So instead, we will wait until something really bad happens. It’s such an asinine way of approaching healthcare, and support for disabled people, but the longer I am sick and disabled, the more I realize the services we need are so under-resourced, that these kinds of decisions are not personal, and are made as a way of removing vast swathes of people from the potential of Assisted Living because demand is so high, and supply so woefully low.

Many people I meet are more worried about keeping their personal taxes low, instead of raising them slightly to cover more investment into housing and health support services for the disabled and chronically ill in their own communities, and who can blame them? They probably don’t realize that what happened to me could happen to them at any moment. I surely never thought that at 51 I would be so consistently unwell, and disabled, that I’m unable to fully manage and take care of myself in a 240 sq ft cabin!

I’m know I’m fortunate to have my little home, even if I can’t manage living the lifestyle that goes with it anymore. At least I have this sanctuary, and in absolute paradise too. Just wish I was able to make it work, and wasn’t so limited in what I can do and where I can go. The post office and home, is a big trek for me these days, and a day in town for medical appointments usually takes me a week to recover.

I DO worry about the future though, and not the far away future, but the future of tomorrow or the day after, or the next time I have an episode, and I’m unable to speak or control my bodily movements. Will I fall and really hurt myself next time? Will I fall outside, and be unable to get up or reach my phone or will I fall and burn myself on the wood-stove? Let’s hope not, eh! And not to worry because according to VIHA, I’m too unwell and my health is too unstable for me to move into an Assisted Living place, with the supports I need, but I’m perfectly fine living on my own in a Tiny House on a Tiny Island with only minimal support.

pneumothorax

when you’ve just got to take that photograph before getting on the water taxi to go to the hospital, even though your chest feels like it’s exploding, although you subsequently find out, it was actually doing the opposite!
And I just thought it was the view! lol …

Sunset, montague harbour marine park, galiano island, dusk, last rays, seascape, boat, bliss

“If me doing this, taking this picture makes a difference to the outcome, I accept full responsibility!”

Amen to that!

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.

FOR SALE – $69,500 OBO


PLEASE NOTE: THIS PRICE IS FOR THE CABIN ONLY. AS IS. MUST BE MOVED!

Informed by the Japanese Wabi-Sabi aesthetic, emphasizing the beauty of nature and organic forms, including their flaws; the materials were predominantly chosen for their patinas, weathering; and their relationship to Galiano island, and it’s inhabitants.

A ‘character’ building, imbued with local elements, and patinas, the palette and finishing inside evoke more of the same ‘island vibe’ – sun, ocean, forest; not hewn fresh but aged, and with some stories to tell. The structure is informed by and highlights the beauty and natural grain in the wood; aged patinas of the siding and materials used, so that organic flaws become subtle features that underlie the tranquil beauty of the space.

This slideshow requires JavaScript.

MEASURING 24 ft by 10 ft. This substantial cabin on wheels, was built on a flat-deck trailer base, using traditional timber framing, and post and beam techniques because of the wider size and higher weight baring capacity. The house is all on one level with small storage loft above the bathroom, so ideal for older and less able bodied owners too.

The living room is just over 9’ by 9.5’ and has lots of natural light and a lovely cubic mini grizzly wood stove, which keeps the tiny house very warm. There are exposed posts and beams, and a warm and cosy vibe. The Living room and bedroom are at opposite ends of the home with a hallway separating them with a bathroom on one side and kitchen on the other. Beautiful aged Douglas fir Post & Beam features delineates the different living areas, creating a feeling of light and spaciousness throughout, as there are no sleeping lofts.

The kitchen features new Ikea cabinets in Hittarp design with oak countertops and a ceramic sink with black Ikea faucet. The bathroom is small but features a new Separett composting toilet, and Japanese mini Ofuro-style bathtub, and shower, as well as storage.

  • MADE ON GALINO by local island artisans and contractors
  • Features exposed post and beam and traditional timber framing
  • Built using materials and processes consistent with current building code for a small cabin but on a flat deck trailer so portable
  • High R value insulation (R35+)
  • Mini wood burning stove
  • Hot water on demand propane water heater
  • Bathroom with Japanese Ofuro style tub, shower and storage
  • NEW Separett Villa 9200 composting toilet
  • Four distinct living spaces: kitchen, living room, bathroom and bedroom
  • NEW Ikea cabinets, oak countertops and ceramic sink
  • Detachable porch, deck, and staircase
  • Passive solar heating from windows on three walls
  • Bamboo and Laminate flooring throughout
  • Water purification and filtration pumps purify to 99.99% if not on well system
  • Rusted rustic patina on siding, with locally milled wood from Galiano treees
  • Open spacious feel and design allows for normal furniture, and more choices
  • Designed to be a longer term living space, rather than driven from place to place
  • This is a home that was built to last longer than you will!

SOLD AS IS – there are still some interior finishing touches to be done as my health issues have kept the going slow, but she’s 95+% there, and she’s a beauty! If you are interested in finding out more, or would like to arrange a viewing, please contact me via the website.

For logistical reasons this property is only suitable for people living on the Southern Gulf Islands, SSI and Vancouver Island, or Lower Mainland, BC. Please feel free to share this with anyone you feel might have a genuine interest and resources to follow through. THANK YOU

Screen Shot 2018-03-29 at 3.35.06 PM