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