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Systemic Describes ME/CFS

Systemic best describes the characteristic of ME/CFS:  the exhaustion, like a lead weight, hits muscles, organs, and brain creating an overall resistance to movement.  Physical energy is engaged in a battle against spirit. Two weeks ago, I attended wedding preparations and celebrations, babysat my five-year-old granddaughter, and felt like I […]

Armed with Info

The floor reached out for me, pulling me down with alarming force.  I fought to remain upright, waves of nausea weakening my resolve.  One hand flew to my brow – now a pool of sweat – while the other searched for the phone. I’m calling 9-1-1, I texted my husband. […]

Staging Challenges

Wedged between one satisfactorily completed task and an overload of unfinished chores, I am a mess. We have decided to sell the house, and on the advice of stagers, are tearing everything apart, sorting into three piles:  garbage, Goodwill, and keep/store.  Purging, we are discovering, is exhausting. In order to […]

ME Awareness May 12th

It is just past noon and I am still in bed.  It is doubtful that I will be able to do much else today. Yesterday, I went for lunch with my daughter, her mother-in-law and the baby, an occasion for which I rested up.  One hour we were gone, and […]

Policy vs Need

“I can’t process your application with the information I’ve been given,” the woman on the phone is officious, likely hates her job, I theorize.  “Your doctor has only sent me four medical reports; there is not enough here to support an inability to work.” I might have guffawed at this.  […]

Body Talks

Listen to your body. Glib advice, especially if ignoring the body is habitual, and compliance is not listed as  a character trait. What would my body have to say, I wonder. My legs, stiff and inflexible, lumbering along like Frankenstein; are they telling me to put them up, resign myself […]

Dreams Compensate

In dreams, I walk, no concern for the distance.  I ride a bicycle, or drive a car.  I move with purpose and direction… …until lucidity snaps me back to reality and then I plummet into the despair of knowing these are no longer options for me. In dreams, I confront […]

Inaccessible

Spas are meant to be luxurious: relaxation sublime.   My daughter planned on it when she booked us into a top-rated facility for a morning of pampering. My daughter doesn’t have mobility issues.  It wasn’t her inner bitch that threatened to spoil the day. Should have known there’d be a problem […]

“Getting Our Lives Back”

The documentary, Getting Our Lives Back offers an inside look at the Fibromyalgia spectrum.  It is UK-based, and the drug they talk about I do not recognize, but the number of people affected and the descriptions offered are universal. There is a lot of confusion about the name of this […]