Tag: ME/ CFS

Life Currently on Pause

Yesterday, I decided to pretend that the disease I suffer is not present.  Just for one night I wanted to take a break, be normal, live life. I am not talking big risks here people!  I am just talking a night of t.v. watching like in the old days, before I got sick.

“I’m still lying down, right?”  I convinced myself, hunkering in under the sheets.  “What can it hurt?”  That was 7:00 p.m.  At 11:00, I turned off the noise and distraction and retreated into sleep.

3:00 am the first repercussion hit me – constricted airways, choking for breath.  I staggered to the bathroom and my inhaler, then tried to go back to sleep.

No deal.  My overstimulated brain was locked on wired – replaying the details of the shows I’d watched over and over, like an ongoing, unsolvable debate.

I got up and made myself tea, and noticing a pronounced weakness, allowed my walker to support me.  I had overdone it.

I eventually fell back to sleep just after dawn, and now just coming up to noon, I have managed to get myself dressed.

Why is it so hard for me to learn this lesson?  My body/ mind/ emotions/ spirit have, through the vessel of this disorder (ME/CFS), sent me a clear and profound message:

P..A..U..S..E..!

So life, forgive me for opting out of participation right now – I am taking a sabbatical.

Day 199 “Doing and Being”

“We are human beings not humans doing” New Agers like to spout. I used to love that saying, thinking that it spoke to the busyness of our lives and our need to slow down and experience life.

Then I forgot about it, too caught up in the drive to be successful; to be somebody – legitimate.

“If you’re not giving 110%, you’re not giving enough!” was one of my father’s favourite sayings. He was a conqueror; a doer to the nth degree. Of course, part of that was because he was afraid of just being. Standing still would have meant being in the moment, and for him that was too big a risk to take – there was too much stuff to deal with – better to keep moving.

Being or doing takes on whole new meaning when chronic illness shows up. No longer able to keep pushing myself, I am confined to being more often than I’d like, yet it is still not easy to embrace. My mind, like a broken record, continually runs over the things I should be doing: the wash, marking, calling someone, writing a thank you, cooking dinner, and so on, circling back over the same list of must do’s with no response from my body. The more it circles, the more my guilt builds; or if not, guilt, worry. What will happen if I don’t feel better tomorrow? Who is going to change the bedding? Will my friends hate me; or worse, give up on me? Will I lose my job if I don’t some work done? All the while, my body, like a paralyzed slug, lies dormant, immoveable, indifferent.

I have cried to no avail. I have raged, and bargained and tried to ignore my reality. Yet, there is it. “A debilitating chronic illness” the doctor called it. “As debilitating as a cancer patient undergoing chemotherapy, or a patient in congenital heart failure – but not life threatening.” Depressing though, incredibly depressing.

I am reluctant to tell people what is happening to me. On my good days, I appear well, full of energy. I am embarrassed to admit that the moment I get home I will fall apart again, likely not getting off the couch all evening. No one sees me this way, so who believes it? Except my husband. My poor husband, whose own battle with cancer is still ongoing, and who needs a supportive, caring partner as much as I do. We laugh about our shared challenges, but underneath it all, he must feel as I do, that is somehow not fair – not the way we thought our life would be.

I have work to do to learn to “just be” when illness has worn me down, and “do” when the going is good. Now, more than ever in my life, finding and balance between doing and being is all important.