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Theresa: Does anyone out there care?


Hello, my name is Theresa. I have officially been diagnosed with FM/CFS for 3 years. Although I know I have had it for much longer. I have had Degenerative Disk Disease since birth and I had a spinal fusion in 1992. Soon after I was diagnosed with Psoriatic Arthritis. I coped with this as well as I could and continued to work as I was the only person working in a very dysfunctional relationship.

I was divorced in 1994 and then became a single mother. As a teenager I worked very hard to get through school and college as my parents passed away when I was 14 & 18. I built a career by working 3 jobs and going to college, then working in dead-end jobs to build my resume. By 2000, I was finally able to make great money and enjoy the benefits of hard work. Then I began to get sick. First it was heart palpitations which was diagnosed as Mitral Valve Prolapse Regurgitation. I walked around with a monitor stuck to my chest for weeks. Then I started having horrible dizzy spells and would fall repeatedly. My new husband was so patient as I tried to find out what was wrong. I went to specialist after specialist who said that there was nothing wrong with me. I had continuous aches and pain but thought that it was caused by Arthritis but it was getting worse........much worse. I started having horrible migraines and a continuous foggy feeling. I worked for the federal government and I was honest with my supervisor about my illness and she was not impressed that I was losing so much time for appointments and tests. In 2002, I was "laid-off". I was devastated and fell into a deep depression. I couldn't get another job as I could barely walk by that time and had to use a cane. They are not supposed to discriminate but ...........we all know they do. As well my old job gave me a bad reference as being unreliable and an abuser of sick time. I put in a claim with Human Rights and it was dismissed when my former employer said that I was let go because I was incompetent.

I finally was sent to a Rheumatologist who diagnosed me with FM/CFS with 18 positive pressure points. I was happy to finally be diagnosed and know that all of my symptoms were under one umbrella. I soon realized that being diagnosed didn't mean that I would be treated. My family doctor told said "It's just a sleep disorder". My Rheumatologist said, "There is no treatment, what do you want me to do?". I then became bedridden and struggled daily with this new me. I was eventually admitted to hospital and told that they would help me through this. I was very hopeful, although my hopes were soon dashed.

After a week in hospital dealing with conflicting advice and diagnoses...........I came home with less hope than I ever had. It happened so fast..........I went from a business woman saying hello to all the elite suits on the way to coffee break. To being bedridden and depressed, in so much pain I couldn't do anything but cry. Financially, I was ruined. I did get CPP disability..........but I now make in one month what I made in less than a week. We have nearly lost our house and may still. I can't pay my bills, I can't get treatments needed such as massage and acupuncture..........who will pay for it. I have been on so many medications, I can't count them and have had just as many reactions. I am not even 1% of my former self. I am a shell, a burden to my family, a stranger to those I used to chat with everyday. Society treats me like I am on welfare. Doctors hate to see me coming. I am 38 years old and I can't dress myself or brush my teeth or make a meal. I am living in poverty in Canada, because I am sick. As if the pain is not enough, now I am a non-person. Guilt racks me everyday as I watch my husband struggle to keep our home and feed us. My daughter has taken over alot of the housework. I can't watch her do it.............it kills me to see her sacrifice her social life for me. I have considered suicide but it would kill my family.........but aren't I killing them anyway? I know that I would never carry out suicide...........but I am dying now........a little each day. I have no spirit left. What happened to the fighter who went through school against the odds? My husband says that he admires my strength. I am just trying to get through each day, each hour, each minute.

This is a list of what I deal with everyday...........recurrent flu-like sickness; recurrent sore throats; painful lymph nodes; muscle and joint pain; night sweats and fever; severe nasal and other allergies; irritable bowel syndrome; mitral valve prolapse; severe PMS; chest pains; temporomandibular joint dysfunction (in the jaw); hair loss; carpal tunnel syndrome; cold hands and feet; dry eyes and mouth; severe and debilitating fatigue; widespread pain; numbness in the limbs and crawling feeling like pins & needles; painful swelling in the hands, legs, feet, neck; GERDs (gastro-esophageal reflux disorder); spatial disorientation; calculation difficulties; memory disturbance; communication difficulties (problems speaking, confusing words); depression; anxiety and panic attacks; personality changes for the worse; mood swings; sleep disturbances; daily migraine headaches; changes in visual acuity; burning sensations; light headedness; feeling 'spaced out'; disequilibrium; unusual nightmares and disturbing dreams; ringing in the ears; difficulty in moving tongue to speak; severe muscle weakness; intolerance to bright lights; intolerance to alcohol; intolerance to sound; extreme sensitivity to medications and their side-effects; alteration of taste, smell, and hearing; insomnia; inability to achieve stage 4 restorative sleep; morning stiffness in the muscles and joints; restless leg syndrome; muscle spasms; muscle quakiness and shivering; sleep paralysis (related to stage 4 sleep deprivation). I am finding new symptoms everyday. My family is very supportive. But I am dealing with the ongoing battle within myself. I have given up on doctors.........they don't know what to do. I would do anything to get some treatment. I can't believe that people with Chronic Pain conditions suffer like this in this wonderful country. Does anyone out there care? Do they not realize that we are suffering? I am to the point of desperation............