ME Awareness May 12th

dreamingIt 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 then I came home for a nap.

Then my husband and I decided, spur-of-the-moment, that taking my Mom out for dinner would be better than waiting for Mother’s Day, so we did that.

While we were eating a friend texted and asked if I could come over.  She is battling for her life right now and I want to be with her as much as possible.  My husband dropped me off for a short visit on the way home.

Yes, people with moderate ME/CFS can do things, but everything comes at a price.

As tired as I was last evening, I had overstimulated myself, so sleep was elusive.  At 10:00 this morning, my husband came in with a cup of tea.  I only just now managed to eat a piece of toast.

th-1.jpgThe exhaustion of ME is systemic.  It’s not the kind of tired that comes from having overworked: a well-earned fatigue leading to deep slumber.  It’s more than the fatigue at the end of weekend of company, although many try to tell me they know what I’m feeling.  It is dead weight burn out:  the incapacity to generate enough energy to activate movement.  It accompanies any exertion no matter how minimal.  And, it can last for days.

It means that those of us who suffer from ME/CFS have to be selective about what we commit to.  It means that we have to disappoint people and bear the guilt of not being able to be all things for all people anymore (most of us were that person before disease struck).

Yesterday, I exceeded my normal activity level times three.  Today, I will lie here contemplating washing my hair for much of the day, likely not being able to conger up the necessary fuel to do so.  th-2

Hopefully, tomorrow is better.  Can’t count on it though:  this is ME.

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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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