Health & ME/CFS, This Crazy Life

Pride, Pain and a Reality Check

I wrote at the end of January about the disconnection in my mind between what I can actually do versus what my mind tells me I ought to be able to do.  I wrote to myself to “work on that disconnection.”

I thought I was. But apparently not enough.

Tuesday I had to go many places & do many things in order to get my disability appeal in on time. One item on my list was to pick up dogfood at Costco. Usually, Rhiannon is with me when I get it, and she picks it up or we do it as a team – they’re 40# bags.

But she wasn’t with me. I was able to slide the bag into the cart from the pile with no trouble, but when it came time to get it into the car, I looked around for someone who could help, but since there wasn’t anyone, I went to lift it myself. And that’s when it happened. Even though I tried to slide it more than lift it, something got damaged in my left shoulder in the process.

Now, 4 days later, the pain hasn’t stopped. If anything, it’s gotten worse. And there is clearly swelling around the back of my shoulder and the side. I can’t lay on that side. I suspect I tore the rotater cuff, though I won’t know until after seeing the orthopedist & getting an MRI.

I’m asking myself the tough question: why didn’t I get help with it? The answers are many: because I was in a hurry; because I looked around & saw no one to ask; because even if I had, my Asperger’s makes it hard to ask a stranger for help; because I’ve hefted the dog food bags from the car to the house for years, though not at all recently; because I was too proud to ask for help; and mostly, because it is unacceptable to not be able to shift a bag from the cart to the car.

Reality check time: I’ve lost a lot of weight in the last year or so, and I’d already noticed a lot of muscle wasting. I’m bony in places that haven’t been bony in twenty-plus  years. The progressive nature of CFS means I’ve been spending more & more time in bed, and less & less time being even moderately active.

The muscles that I used to use to lift those bags of dogfood are gone. And I have to accept that fact, no matter how harsh a reality this is.

My mother told me today that she’d noticed, as I was getting dressed on Wednesday, how “frail” I looked.

“Frail” is not a word my mind associates with my own body. Frailty is unacceptable to my mind. And yet, here I lay, my arm in a sling, aching badly, with the prospect of orthopedist visits & likely immobilization of my arm, along with PT, if not surgery.

How do you teach your mind to accept the unacceptable? I was a physically active person, I prided myself on my ability to do whatever needed to be done, without having to ask for help. It’s part of who I am, how I envision myself.

Perhaps this is a much needed lesson, that I am not that person anymore.

I wish lessons didn’t have to hurt so much.


I don’t believe in coincidences.

An hour after I posted this, I found a reference to a book in my Facebook feed:  How to Be Sick

The author writes this:

I fell ill on a trip to Paris in 2001 with what the doctors diagnosed as an acute viral infection, but I  never recovered. I wrote this book while bed-bound – on my back, laptop on my stomach, notes strewn about on the blanket, printer within arm’s reach.

My goal in writing it was to help and inspire those who must meet the challenges posed by any chronic illness or condition: coping with the relentlessness of symptoms; weathering fear about the future; coming to terms with a life of relative isolation; facing the misunderstanding of others; dealing with the health care system; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.

The book contains easy-to-learn tools and practices to help people live skillfully, maintain equanimity, and even find joy despite the profound changes in their lives. Each tool and practice is illustrated with examples from my own experience, so the book is also highly personal.

Although our bodies may be sick or otherwise disabled, our minds can be at peace.

What she suffers with?  CFS.

I’m ordering it, tonight. Knew I was saving that Christmas money for something! (this and the Avatar extended collectors edition, which I’m ordering tonight as well!)

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