I was diagnosed with CFS - also called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and ( Fibromyalgia (FM),in 1991 , developed MCS - Multiple Chemical Sensitives which ended life as I knew it, I had been active and worked high demanding jobs most of my life. I had to stop working in 1994 and go on Long Term Disability from work and was mostly house/bed bound.
ME/CFS by the Ontario Medical Association, November 2005 is classified as a NEUROLOGICAL ILLNESS DIAGNOSTIC CODE 795 and 'Fibromyalgia/Chronic Fatigue Syndrome care' has now the OHIP time-based billing Code number K037, you can thank the national me/fm network and Lydia Nelson and the people who worked on the Canadian Case Definition for that. However, WHO Neurological Diagnositic Code (since 1992) encourage the classification of ME as a 'Nervous System Disease,' as worded in the ICD-10 G93.3" , and the discrimination persists, I am still told in 2008./2009 that it isn't a neurological illness, many don't recognize it all right here in Ontario and refuse to see or treat anyone with it..
We have been denied proper medical care, disability (for many), research, funding, treatments, home care, supportive housing/housing and there is great amounts of stigma and; lack of education by our governments to the population or to/by medical profession, I hope gets addressed.
Someone with severe ME/CFS health and quality of life, is compared to the last 6 months or even 2 weeks of someone with full blown AIDS. I have lost 17 friends to AIDS in the 1980'/90 and their quality of life was much better than mine unless they were in the last stages. I have Othro Static Hypertension, llow blood volume, tachycardia ,low oxygen levels, eneurological, cognitive, sensory overload and CNS problesm.
In 2003 I was misdiagnosed as bipolar, and several weeks later I was brain/body damaged for life, damaging every muscle and ligament in my body and left not being able to pick up much more than a medium weight book, even a cell phone sometimes, couldn't prepare, chop my own food, or change my clothes or bath/shower myself most times which got worse as I was left without neurological medcial care. I was damaged 2 more times in Feb and March 2003, the last starting Acute Dystonia with seizures.
I developed spasmodic generalized dystonia (there is a different name for each part of the body it effects, when it is most of your body it is called generalized dystonia) I thought started with the Acute Dystonia but have recently tracked it back to the late 1990's when it started in my face, including seizures from antidepressant after antidepressant and other classes of drugs I wasn't informed about with proper consent,, and most I didn't need. The spasmodic dysotnia can get quite severe and has spread through my body on top of the already damaged muscles and ligaments. As it spreads (the cramping of groups of muscles in awkward positions and often in opposite direction), it is called generalized and is in my face, hands, neck, feet, down the outer calves of my lower legs along my ankles into my feet, the base of my spine and has gone up my spine which is gruesome, causing it to cramp and shorten, , just like the the acute dystonia, often I paralyze in positions from the cramping, as well as the whole left side of my body often pushing it to the right, the weak side which drags around often, which indicates there is damage on the right side of the brain. It goes on and off throughout my body, however it is now daily, different parts, I haven't remained permanent in one position so far, many do. I have the myocolonic dystonia full body slow or rapid jerking, and oral dyskenisa, II wake up to or shortly after every AM as well as what may be small seizures. I did endure severe seizures for years after getting off they years of psychotropic drugs, most I didn't need for a neuological illness deemed pscyhatric by the psychatric community, even though diagnosied by an Infectious Disease Specialist, twice.
I also have Hepatitis C which I believe to be chronic no,, Arthritis, Spinal Damage, Bronchitis, COPD,
Since 2003 I have been almost totally bed/house confined, almost totally bed confined for some years. The trunk of my body is also damaged after the acute dystonia, and I have trouble sitting up, and speech problems, often I can't speak at all. My neck, waist and knee joints give out from the damage of the dystonia, often my left side of body as well (it drags around on/off every day) and can't hold my head or trunk of body up and it smashes, lands on what ever is in front of me, or if i can occassionaly direct the landing. I am on the floor or in my bed convulsing and parazling every day. As well as the movement disorders I endure every day, seizures and the pain, and the ME/CFS and FM, and hep C, I don't know how I am still alive I didn't think I would be able to keep living with ME/CFS and the FM, my ME/CFS has always been severe. The few that have stuck with me don't either.
It is a long story and continues on my blog with hopefully a relatively happy ending soon: