"How do you do it?" she asked. "Just how do you manage to keep it together in spite of how miserably sick you often are? It is just so hard to keep doing this, you know?" It is a question I get asked often, and there are a number of answers. First, a rundown of… Continue reading “How Do You Do It?”
ME/CFS patients are often under a great deal of pressure to "stay positive" and told to "visualize yourself healthy and strong again, and you will be." This type of "magical thinking" puts an unfair burden on a person who is already suffering terribly. If they do not improve, then they may be blamed by others… Continue reading Positive/Magical Thinking, Reality, Acceptance, Goals and Dreams
Like most females in America, I became aware of the intense pressure to stay thin when I hit puberty. I wanted to be lithe & graceful & tall like the dancers involved in Drama with me were. Instead, my breasts grew large, and I stayed short, at 5' 5". Still, I wanted to be rail… Continue reading Dismayed
My mother said to me the other day that my brother can't seem to wrap his mind around the concept that I'm really sick and there's really very little that can be done about it. He seems to still think that "if I only went to better doctors or the right hospital, they could figure… Continue reading We Know the Enemy, or ME/CFS/FMS Explained Again.
Note: On Monday I wrote three messages to my mother, in typical Aspie style - I held nothing back. I've clipped a bit here, but it's mostly intact. I'm posting it here in case you want to know what it's really like. Be forewarned: my mother spent two days in the hospital after reading this… Continue reading The Harsh Reality of CFS
Yesterday, a dear friend shared something with me that touched me so deeply that, for a time, I was wordless, unable to express the complex emotions roiling around inside. For the rest of this post to make sense, I need you to read it, too. Really. It's long, and about lupus, but you can insert… Continue reading Always Counting Spoons