Struggling to Put the Pieces Together...

It is the Saturday before Easter and I have been trying to clean up a little in preparation. Unfortunately with my being so slow, I don't feel like I make much of a difference. My youngest son (13) is helping and that is so appreciated. I find myself very frustrated and irritable today and the cause of those feelings lie in researching my illness and trying to understand what is going on.

For some arbitrary reason, I decided to look up M.E. this morning - that is the newest name added to my litany of symptoms, etc. It is fairly common knowledge that Chronic Fatigue is for the most part referred to ME/CFS now. I decided to find out what the new name means and what it could mean to me.

Keep in mind that my quest for knowledge is mainly to try to get the pieces of this puzzle that has become my life, in an orderly group....to seek to understand and help my doctor to understand. Well, I almost fell out of my chair when I stumbled upon something called A Hummingbird's Guide to M.E. ~ Myalgic Encephalomyelitis. I could have written the symptom list myself from my daily life. Why can't the SSDI people use this information in deciding my case. If you have this or know anyone who does, then you will want to read this group of articles. It is very eye opening and will begin to bring sense to this illness that many of us have not had before. It also has links to more sources and information.

I have had my head in the sand for a good many years now, and I believe that all of us with disabilities must be our own advocates - we must use our last ounce of energy and intelligence to research and assist in our own treatment. Otherwise you are destined to be misunderstood and denied your proper rights as a disabled individual. Rights that I would fight hard for in the assistance of another person and now must fight for so that my family receives the assistance and understanding they deserve in handling my illness. Be good to yourself and learn all that you can about your own disability or that of a loved one.