ME/CFS: Just Need Clarity

The desire to re-engage with life is so potent that when any window of wellness pops up I grasp it and, like a naughty school child, ignore all well-intended warnings of caution.  It happened yesterday.  After two weeks of slumping, I felt almost normal.

“Aha!” I said to myself.  “I have energy!”  Before sensibility could get a hold of me, I bundled up the laundry that had been amassing unsorted in the bottom of the closet, and whisked it all downstairs into the laundry room, where more piles awaited.  (I know, this is preposterously bad behaviour, but believe me, laundry has that power over me.)

th-3The plan – hastily devised – was to wait out the washing cycles downstairs.  Armed with an iPad, I thought the lazyboy would be a perfect place to set myself up in between loads.  “Seven minutes”, I told myself as I folded the stuff in the dryer, then:  “Maybe I should have done this sitting down.”  I chose to be optimistic.  “Oh well, I am feeling better today, I can afford a bit more time standing.”

The truth about this disease (ME/CFS) is that while the mind and intentions may play tricks, the body is absolutely clear about its limitations.  The tremors began as I stood folding.  I ignored them.

With a new load underway, I collapsed on the lazyboy and scooped up my iPad.  “Distraction is what I need!”  I tried to convince myself, turning it on.

The headache started next.  “Must be the lights.  I’ll turn them off next time I’m up.”

By the time the laundry was ready to turn over, my body was very clear:  Enough already!  I am shutting down.

“But I haven’t had this much energy in weeks; just let me do a little more,” I begged, while continuing to shuffle the loads.  I returned to the lazyboy, lights now off, and thought I’d try a bit of television – nothing too heavy.

I watched with my hand over my head, trying to hold back the pain.  I waited till the laundry finished.

“What are you doing?”  Ric caught me red-handed.  “I can do this!”

“I’m alright,” I lied.  “Just finishing up.  That’s it for the day.”

He grabbed the basket out of my hands and carried it up the stairs, clearly not believing me.

Truth is, I was not okay.  I had over-extended myself.  Again.

Why is it so hard, when my body speaks with such clarity, to honour its messages?

“Why do you have to make this so difficult for yourself?” Ric asked echoing my thoughts.

“I just want to feel like I’ve contributed something; like I am useful.”

th-4That’s it really, isn’t it?  I used to know who I was, or I thought I did.  I had a sense of being a part of something greater than me; I had something to add.  Now, I am totally dependent on the kindness of others, with little to offer in return.

Who are we when all has been stripped away?  What are we left with that defines us beyond being the blob in the bed?  I guess this journey will, in time, reveal the answer.

This is the clarity I seek.

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Permission to write, paint, and imagine are the gifts I gave myself when chronic illness hit - a fair exchange: being for doing. Relevance is an attitude. Humour essential.

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