I have completed eleven interviews so far, transcribed all but one, and drafted seven of them. I mention this because a friend asked me today how the book was going. It is going, but very slowly. I am working a paying job again, that uses my skills of art and writing to design training. There is nothing as nice as working at something you enjoy, and being able to do it on my own terms. I work as a consultant, from home, and for the most part, set my own hours.
As a whole, life is good. Despite the warm winter, I am skiing and racing. This gives me plenty of opportunity for fresh air, exercise, and good friends. But there is also a very stressful side to my life. I am caring for aging parents, one of which has a lot of health problems. This is the reason I became interested in writing about fibro. The last three years consisted of moving elderly parents out of the home they lived in for 40 years and becoming their home health aide. This has taken quite a toll on me.
Before this time, my fibro was a mere inconvenience. I paid little attention to it. As the caregiving began, the stress it created in my life intensified all the symptoms. It became much harder to ignore. I was exhausted all the time. Dealing with my parents in good times is rocky at best. When I am exhausted, I don't deal well with all the drama. The more exhausted I get, the more I start to ache, and the less able I am to cope with my parents.
This set me to wondering, how do others do it? That became the starting point for my book. Now, I need to focus on what I want to accomplish. What is my ultimate goal, and what are the objectives for achieving this goal? That's the instructional designer in me. The artistic side of me wants to know "what is my slant?" "How do I make this interesting for others?" "Do I need to do more interviews?"
While I grapple with these issues, I will continue to blog as the muse strikes me, and plug away on the last transcription.
Tuesday, January 17, 2012
I was chatting with a friend one day, and our conversation turned to the subject of the host of strange new diseases that seem to be cropping up in our modern world. He asked, “Why didn’t we hear about these when we were growing up?”
I often wonder about the same thing. There seems to be so many new allergies and sensitivities that more and more people have developed in recent years. Are these really new diseases, or just some form of mass hypochondria? Do we really suffer from more and different diseases, or have they always existed and is medical science just now catching up to them? Has our environment done something to alter the chemistries in our body? Or could this be just another byproduct of our increased media coverage?
I don’t know the answer to those questions, but I do know that when my friend’s litany of diseases landed on fibromyalgia, I thought, “Whoa! Wait a minute! I have that one!”
In an effort to learn more, I researched fibromyalgia’s history and found that it has been documented for many centuries. Here are some notable dates:
· 1600s – Fibromyalgia-like symptoms were first given a name:
· 1816 – Dr. William Balfour, surgeon at the
, gave the first full description of fibromyalgia. University of Edinburgh
· 1824 – Dr. Balfour described tender points.
· 1904 – Sir William Gowers coined the term fibrositis (literally meaning inflammation of fibers) to denote the tender points found in patients with muscular rheumatism.
· 1972 – Dr. Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
· 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
I also discovered a paper entitled, “Understanding Chronic Pain and Fibromyalgia: A Review of Recent Discoveries”, written by Robert M. Bennett MD, FRCP, Professor of Medicine at
. In his paper, Professor Bennett states that “fibromyalgia tends to be treated rather dismissively, sometimes with cynical overtones. When I trained in Oregon Health Sciences University some 30 years ago, this diagnosis was never mentioned, even though I trained with one of the foremost rheumatologists in the world at the time. In the London fibromyalgia has become a semi-respectable diagnosis within the last 10 years, but even so it has some critics.” United States
According to the National Fibromyalgia Association, “fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally, and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.”
The Mayo Clinic’s website describes fibromyalgia as follows:
“You hurt all over, and you frequently feel exhausted. Even after numerous tests, your doctor can't find anything specifically wrong with you. If this sounds familiar, you may have fibromyalgia.
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, ligaments and tendons, as well as fatigue and multiple tender points — places on your body where slight pressure causes pain.
Fibromyalgia occurs in about 2 percent of the population in the
. Women are much more likely to develop the disorder than are men, and the risk of fibromyalgia increases with age. Fibromyalgia symptoms often begin after a physical or emotional trauma, but in many cases there appears to be no triggering event.” United States