I guess my life with Myalgic Encephalomyelitis began five years ago. In retrospect it is very clear. I had a very bad flu which landed me in the emergency room. I thought at the time that I might be having a heart attack and the hospital thought it might be a pulmonary embolism. I was told I had pleurisy and some of my body chemicals were at dangerous levels, potassium and saline?[ if memory serves]. They seemed fairly mystified by this but otherwise couldn’t find anything wrong and no exact cause for what had happened. Well, from that point on. I have never been the same. The illness started by just being a flu that never left with a lot of upper respiratory symptoms and constant infections coupled with a fatigue that is indescribable. All I wanted was to sleep , but no amount was ever sufficient. The disease then added a lot of Fibromyalgia type symptoms, [which is also a part of my diagnosis] I have been tested several times for .M.S. [everyone was sure it was M.S.],Lyme, and Lupus. I no longer go for testing’s and avoid the doctors office because honestly I find it just adds stress and isn’t terribly helpful. I have found some help with Yoga stretches [when I can and Provigil is a help in allowing me to continue working.
I would say the disease has changed over time. I have less Fibromyalgia symptoms but more cognitive issues, and certainly a wide host of symptoms whenever I overdue. The problem is, it is very difficult to figure out your parameters with this illness. It is all over the place and many ,many things can set it off. I consider myself one of the more fortunate but can only work part time and have given up many of the things most people consider pleasures. The sacrifices made to ones personal life are really hard to comprehend unless you live it yourself. Everything I do is a balancing act, and I still get unpleasant surprises regularly. I would say about the only positive thing about this is that you come to value the people who stand by you in ways you never could before and you feel more compassion and empathy for others. I think about children with this disease and I think its just terrible. I hope there are treatments soon. It is hard to believe in a cure, but effective, affordable, treatments would be wonderful.
I have been interested in art all my life. I am glad to be able to contribute.