“Not right now” has been the last 8 years. Wondering if there will ever be another, “Yes, I can do that!” Or, has the ship sailed on the rest of my yesses?
Recently I turned 65 chronologically, and my body turned 110. I did not plan it this way. Generally losing patience waiting for the day I can get out of bed, get dressed, and go somewhere where I’m needed or at least welcome. I just can’t do that right now. Right now I can get from the bed to the couch where I lay on a heating pad or ice for 2 to 3 hours and then go through every mental exercise to give me the energy and the gumption to sit up.
The first time a doctor explains your entire life as the symptoms of an often fatal syndrome, you finally feel understood. So grateful to know the life long battle with constant, weird, physical attacks has a name. But you just wish it was a different name…like the flu, or cancer.
There are at least 6 things you must know and follow if you have been assaulted by Ehlers-Danlos:
1:The first rule of living with Ehlers-Danlos Syndrome, EDS, is to learn that no one, absolutely no one, else, will understand it. Even most doctors. Like the direction of your life, EDS is mercurial, changing just to be inconvenient.
2: Blame someone in your family for all of the dislocated knees, fingers, wrists, hips, toes that you have personally pushed back into their sockets. Blaming the mother is always good, the genetically insufficient collagen that causes EDS and makes you so flexible most likely came from your mother. and grandmother, and great-grandmother…This syndrome just goes on with very little effort to stop it.Continue reading
I live in a suburb next to an enormous Intel plant in a desert where I don't belong. My neighbors are techies, blue-collar football fanatics, gamblers, bankers, parents, sky-divers, nurses, pilots. I'm a dance, music and acting teacher, performer still, mother and wife hoping to be kind in this corner of my non-indigenous environment. I actually like living here. Most of the time.