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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 […]

ME/CFS and To-do Lists

To-do list: write publish a blog post shower and dress strip the bed and remake vacuum and dust bedroom put away groceries from yesterday prep veggies for cooking make vegetable curry make red lentil kale soup make spicy tomato chick pea soup put away clothes from laundry Reality: slept late […]

Illness is Loss: Encouragement Needed

Frankenstein legs, I call them, these long, slender appendages once a treasured asset, now stiff and unpredictable. Hunchbacked is my stance thanks to weakened back muscles. Cruella de Vil has nothing on me, my formerly auburn waves salt and pepper with a shock of white at the front. And when […]

A Glimmer of Hope

“Was I right about the doctor?”  the middle-aged receptionist asked cheerfully as I emerged from the examination room and waited for my next appointment. “He’s very good,” I agreed.  I had hesitated to see one more specialist after a history of dead ends trying to get a diagnosis for what […]

Pain

Pain. I push against it. Challenge it, like a warrior intent on proving that I am indestructible, unwilling to flinch.  If I ignore it, I tell myself, then it will cease to have power over me. Except, bit by bit it gnaws at my edges, tearing me down and just […]

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 […]

On Acceptance and Illness

“Grandma, when will you be better?” It is 5:00 on a school morning, and I am sitting at my granddaughter’s bedside nursing her through a sore tummy. “Not sure, Honey.” “Oh,” she shrugs.  She is four and has never known me any other way. Later, we snuggle up and watch […]

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.  […]

Still Loving My Doc

The challenge, when dealing with a chronic illness – in my case ME/CFS – is staying positive.  Momentary improvements in health are toppled by extreme crashes.  It’s like living in an eddy where, every once a while, the current quiets and it feels as if there might be an escape, […]