I have been battling the ups and downs of an illusive illness that came and went since my mid-teens. Whatever it was that plagued me would put only a temporary kink in my life. I would never know what might trigger a bout of whatever it was, but it would always eventually go away and I'd get well again.. never as well as I was before the bout, but well enough to get on with my life. I married, had two children, went to university and got on with my life. In 1985 I was diagnosed with Fibromyalgia, which at least gave a name to the demon that chased me. I was offered an antidepressant that I could not tolerate and told to exercize more.

I was one of those'80's era "Supermom's". I was busy building my career as a Heritage Resource Management Consultant, using my years of university study and hands on experience with heritage sites and old buildings to use in my local community and region. The Victoria, B.C. Canada area is world known for it's love of it's heritage. I served many years as the Chair of the Heritage Committee of the City of Colwood. I also was active in volunteering in my local area. I served several terms as a director and then as President of the Goldstream Region Museum Society, who's small museum I managed for many years. I was active with Parent/Teacher organizations, donated time as a volunteer at the local food bank, and spent a year as an officer with the Navy League of Canada Admiral Falls Cadet Corp. Those young cadets have energy to spare and every outing was an adventure. Over time the bouts of ilness grew deeper and longer and the peaks of wellness became lower and shorter.

In 1990 I fell off the face of the earth. A work related accident that would have been very minor to almost anyone else flattened me, triggering a decline so bad that I have never been able to recover.

I used to define myself by the roles I played in society. I stress the words "used to". All this began to change when I became quite sick and disabled late in 1990 by a double whammy of Fibromyalgia and Myalgic Encephaomyelitis.. aka Chronic Fatigue Syndrome, Chronic Fatigue Immune Dysfunction Syndrome, and a host of other alias'.. disorders that are much misunderstood and much more life devastating than a few aching muscles and feeling a bit tired all the time. A host of other disorder tags have been added, Irritable Bowel Syndrome, Neurogenic Bladder, Osteoarthritis, Chemical Sensitivities, Post Herpatic Nerve Pain Syndrome, and in 2002 I had Multiple Schlerosis added.

Today most of my past life, past role designations, no longer apply. I no longer even recognize my past work as being done by me... so much have I changed. I have lost so much that the world I was once part of is truly foreign to me. I spend most of my days housebound, sometimes bedridden. I have difficulty walking and controling my hands.Somedays I can putter a bit in my garden, somedays I can spend a few precious hours shopping or going to the public library. Somedays I can spend a couple of hours puttering at my computer. Somedays I can do a bit of artwork. Mostdays I am too sick to do much of anything but sit. Somedays I am so overcome with headache and vertigo all I can do is lay in bed as still as I can so I won't get sick all over my bed. Somedays the flickering of a TV or computer screen hurts my eyes. Somedays my brain cannot interpret with written word. Somedays I cannot remember the names for things, how to turn on my computer, what day it is, how to read, what things are.. let alone what they are used for.. or much of anything at all for that matter. Anyday, at any time, strength can suddenly leave me.. like an electric cord being pulled out of a wall socket. Without warning, my head spins.. my mind goes blank.. my legs go weak.. I drop what is in my hands. What I can do "now" I may not manage "later".. and what I cannot do "now" I may be able to manage "later". This is the only solice I have.

I cope moment by moment, day by day, week by week. I try to not plan ahead because I never know when I will have a good day.. or a bad one.

This is my world, my life. I would not wish this existance on anyone.

Phyllis