Sharing my Invisible World

Today I was invisible.  Not like I've disappeared.  But like no one sees my world.

People see me, but they don't really see me.  They watch my move through the day, but they don't know the price I pay for my choices.  They listen and they try to understand, but how can they when I barely understand myself from one day to the next?

I woke up with my neuropathy symtoms roaring.  Didn't help that sleep was tricky last night so I didn't rest well.  I woke up drag-down tired with aching calves and wincing flickers of pain with each step.  My hands tingled numb almost to the elbows.  I made five weird mistakes before breakfast.  So I knew my mind was muddled.  Mistakes like using the shampoo for body-wash, or forgetting to add water to the coffee pot.  Random stuff.  Pay attention, I thought.  Must pay attention. Which is even more exhausting.

I craved a nap by 9am.  But we had gymnastics for the boy which he fought every five minutes.  He decided to like a boy in another class at the same time, so he raced from our area to be around the boy.  I had to carry him back where we belong.  He's heavy!

Then house-cleaning day with four loads of laundry.

Then the girl had make-up gymnastics because we were stuck in road construction yesterday so we're at a different time when Daddy can't watch the boy so he played near a stairwell and I stood to keep him from falling headlong down the stairs.

At home, I recorded a podcast and the recording had a weird buzz so we had to scrap it.

The laundry sucked all the hot water so the kids had a barely-warm bath.

And then homework increased in second grade so the girl and I were busy until ten minutes before her bedtime with math and spelling.

Not a break.  Exhausting for anyone.  I took meds in the hopes of side-stepping the worst of the swamp-muck today, but they didn't work.  They just made me jittery and anxious.  Still craved a nap.  And now it's bedtime and I'm buzzing awake because I fought so hard for the whole day not to sleep. I forgot how to relax.

These things happened.  They can be seen and told.  But there is another dimension to this day, the invisible space that cannot be seen be others.

I had a moment. A moment where my invisble world formed up around me and I saw it for real.  Because I'm good at looking through it, through the challenges and the accomodations.  I'm good at keeping my world transparent.

I do have help cleaning the house every few weeks.  Anyone with young kids needs help :).  Still, she had ten minutes extra so I said, "Oh, you could make Anika's bed.  She'd love that."

Ten minutes later and the room looked better than I've seen it in months.  Picked up, tidy, straightened and smoothed.  Why can't I do that? I thought.  Why does it take me an hour to get half that finished?

Ugh!  Our challenges are real.  Our invisible world is real.  No one sees it, but we live inside that world day after day.  And it doesn't have to be a bad place.  No, my invisible world has charms and blessings.  I would not trade my family for a thousand cures (cures for me, anyway, it would be a lot harder of a choice if other families were saved- an ethical dilemma).  Anyway, this invisible world is not a bad place.  But it is challenging.

We are strong.  For all of our weaknesses, we are strong.  We must be stronger than we ever thought possible.  We must be creative.  And courageous.  We must wake up each day even when symptoms roar and we must create a world that is positive and generous and kind.  We must share our stories, because, after all, how else will the invisible ever be seen?

So here is the story of my day.  And I would like to say tomorrow will be better.

But honestly, I don't know. . .

I can and I do hope so :)