|Instead of this|
|It was more like this.|
I was able to hold myself together for the first part of the questioning. Things like my name and what positions I had held in my employment life. Those questions have clear, factual answers. It was when I was asked to describe how I became ill. How it affected my ability to work. How it affects my ability to function at home. Those answers are also clear and factual. At the same time, they are subjective, emotional and based on my inner experience as they happened.
As I told about going to school to be a paralegal and how that was a dream come true, I was calm. The calmness began to go away when I started telling how my world had changed. How I could not remember how to use the skills I had worked so hard to learn. As I told the administrative law judge about the times I was taught a new task in my new job, only to not only not remember how to do it, I didn't remember being taught, the emotion began to overwhelm me. As I told him of the physical pain and fatigue that cause me to not be able to go to work, the tears began to fall. Several times, I had to stop and compose myself. It was probably the most emotionally painful time of my life. The hardest question of the day was the last one. Why did my illness keep me from working full time.
That's when the tear ducts opened wide as I tried to tell the administrative law judge how I had always been the "go to person" in the office. How I had always been the one at work early and staying late. How I had always been on top of my game, admired by everyone and receiving nothing but the highest reviews. How almost exactly a year before I had to stop working, I was recognized at my graduation ceremony as graduating with the highest honors - a 4.0 gpa. I worked full time and went to school full time and did both well. Then without warning, I started becoming a person that I didn't know. A person who was so fatigued that walking in from the parking lot caused me to have to sit down as soon as I got into the building. Many times, I didn't think I'd make it into the building and thought about sitting down on the curb to rest. I became a person who was in so much pain that no matter what I did or what I took, it wouldn't go away. The pain grew to be so bad that I would throw up trying to get ready for work. I became the most undependable and useless person I had ever seen. I didn't understand it and I didn't want that to be my life. By this point, I was pretty much inconsolable. All I wanted was to get out of that room and into Mr. Supportive's arms.
The administrative law judge had been reading the statements from family and friends and the printouts from this blog as he listened to my testimony. Before we finished up, he asked me how long it took to write a post. I told him it depended on the day. On a good day, I could do it in a hour or so. On a bad day, it could take several hours up to several days. Then he asked me why. Why did I write? I don't think I really knew until he asked me that question.
In the beginning, it had been to chronicle my pain so that he could read it when that day came. It was at that moment that I realized that it was much more than that. I realized that it was also for all of you who might read it. That somehow it would help you not to feel alone. It's for your family and friends who don't know what to make of this disease that has completely changed you. We suffer from a hidden illness, an illness that is considered by some, including those in the medical profession, to be nothing but laziness or "in our head". I'm here to tell you that it is real. It's only "in our heads" in the memory loss that it causes and the false nerve firings that magnify pain in our body. It is a real illness that needs a real cure. Too many people have suffered for too long, physically from Fibromyalgia and mentally at the hands of their family, friends and doctors who don't believe it exists.
I sometimes feel that the "world" is run by Google searches. It's time for all of us to use the power of the internet and be as active as we can and get the truth out. We deserve to be heard! Since most of us become very limited in what we can do, write a blog, comment on blog posts, talk to everyone you can. Write your state legislators, your Congressman. Become active reading the information that the various Fibromyalgia organizations publish. Let the world know that we are legitimately ill and we deserve to be treated as such.
I have come to believe that God has a plan for me. A plan to use my illness and suffering to encourage others who suffer like I do. I'm not sure how it's suppose to work because there are so many days when I can't function. In addition to Fibromyalgia, I have Chronic Myofasical Pain, Chronic Fatigue, Peripheral Neuropathy, Lymphedema, Carpal Tunnel Syndrome and 2 herniated discs in my neck and 2 in my back. I trust that He will show me and I pray that I can help those of you who read this in some small way.