Member since February 2010
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) ended life as I knew it in 1991, a neurological illness defined by WHO (1969) and Ontario Medical Assoc. (2005) which has kept me mostly bed/houseconfined and almost totally since 2003. Although diagnosed by an Infectious Disease Specialist, it was considered psychiatric at the time by others and Fibromyalgia (FM) and Multiple Chemical Sensitivies (MCS) came with it and extensive discrimination. I also have HepC I found out in 1994. My ME/CFS was considered psychiatric or just a serotonin problem, I endured 10 years of adverse reactions to SSRI's and other medications without proper informed consent, and which were ignored.
At near 50 misdiagnosed bipolar on the med's 3 months and brain/body damaged repeatedly every muscle and ligament causing them to be shortened and stiff and greatly weakened, movement disorders (several) seizures and dystonia. I was put on more drugs, some mixed together causing more damage throughout 2004, when I came off them all hell broke loose, the damage more extensive and complicated, the collusion got worse. I was refused to be hospitalized in total 15 attempts from 2003-2008 including the former Minister of Health and also an investigation as to the collusion, no "honest" diagnosis, treatment and extensive abuse and human rights violations in 6 hospitals. As the Access Care Center was involved which falls under the same Ministry both were negligent as well.
Diagnosis/damage is not on my medical records, nor have I received the diagnosis/care afforded to those with Brain Injuries or my ME/CFS/FM, HepC and I was cut off doctors & med's, and have increasingly worsened. . I was left severely and increasingly ill and badly damaged, with seizures, movement disorders/dystonia convulsions & spasmodic dystonia spreading through my body I endure every day. I have boxes full of letters for help to all levels of government, and we were told to get me out of the country, or find a Sponsor to no avail, the more we asked for help from “G”overnment, medical community etc., the more I was purposely isolated.
I have been an activist for various issues during my life, mostly Human Rights, and continued during my “net life”. I have found this last my own Rights and left like this to be the most challenging in my life so far. Learning, re-learning, typing as able are very challenging I often type the way my brain/speech chops off words and often can't type or speak at all, only copy paste, click, autofill.
My media content is fairly primitive due to my condition(s), and political content I post on my MBN blog here, not my personal blog.
Some are very deceptive, as all the disabilities mentioned above have to be stabilized enough, and feeling well enough for short periods of time to be able to do them ... which isn't often and is a problem trying to get across to people how devastating the illnesses and damage are. Think of it as being severely ill beyond peoples comprehension - quaility of life worsen than cancer patient going thru chemo and for those of severely affected last few months or weeks with someone with full blown AIDS., As well the movement disorders, paralysis you can't control and being hit by several Mac trucks with no medical care.