Sunday, September 24, 2017

Awareness


Today was a rough day. I woke up feeling fine, but over the next couple hours became more and more fatigued, despite doing only the most basic things: Showering. Walking the dog (only to the back of the apartment!). Making and eating breakfast. After a few hours I was in serious pain, but also had enough strength that I went out and did the laundry.

 Yesterday was a very different day. I took the energy I had yesterday to volunteer at a food pantry and run out to Fountain Valley to a thrift store to try to find some fall/winter clothes. Which is, no doubt, why I'm struggling today.

Every day is a choice, every thing I do an investment that has to be paid for.  Yes, many days I do things that require a lot of energy, a lot of "spoons".  For me, one good day spent doing something that brings me (or others) joy followed by a few days of pain and exhaustion are better than spending every day in bed.

One of the really exhausting things I've stopped doing in my day to day life is to apologize for having good days, for taking advantage of being relatively pain free or more mobile for the hours I am.   I won't apologize for carrying my own groceries, knowing the next day I may not be able to.  Won't apologize for going on a walk through the nature center, knowing that the next day I'll be relying on my cane to get around the house in the morning.  Won't apologize for living my life, and spending my spoons as I see fit, rather than trying to hoard them as if I could save up enough to trade them in for the remainder of life in good health.

And honestly? I get a little sick and tired about all the judgement.

I get it. I do.  We're a species that relies heavily on vision, and what we "see with our own eyes" is often extrapolated from in a way that's considerably less than objective.  This is where awareness comes in.  It's about actually KNOWING something about what's actually happening, and NOT relying on a few moments of visual information to form an opinion. It's about expanding our schema to include things we haven't, ourselves, experienced and understanding that other people may have experiences that are foreign to us.

 Learn more about judgement, stigma, and invisible illnesses from the Invisible Illness Association

1 comment:

Susannah Anderson said...

" For me, one good day spent doing something that brings me (or others) joy followed by a few days of pain and exhaustion are better than spending every day in bed. "

Exactly right! I've learned to count tomorrow's aching and shakiness as just payment for today's adventure, no worse than paying with cold cash, which I don't have anyhow. Pain, I do.

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