work

I started in April to move toward work again.  In thought.  Shaped my request to the Universe:  when I’m ready, about 10 hours a week at a certain pay rate, knowing that 10 hours would be punishing, but possible.

A few weeks ago I got a call for a short-term temp gig this week.  I’ve worked with the client on the same project beginning about two months before the hospital mess.  The caller wondered–would I be interested in more temp gigs?  Yes, with the understanding that I’m recovering from long-term illness and unable to work 8-hour days.   About 3 to 4 hours a day?  Yes.

On Tuesday when I got home after 3-1/2 hours at work, I sobbed the brain-fatigue out of me.  Then, spent 6 hours lying down reading (=resting).  Was able to make lunch.

Yesterday when I got home after 3 hours at work, was doing better–no sobbing until Big Mister rightly asked me to do something.  Then, my response was like being poked at with a sharp stick, the end anointed with poison.  My head throbs with fatigue, my eyes blink too slowly.  I want to lie down and just stop.

Just over a year ago, four months out of hospital, I wrote about my bubble theory of recuperation, back when thinking was a full-time exercise, often in futility.  It’s still there, my bubble that indicates when I’ve surpassed my tolerance of stimulation, of being alive to the world.

The fatigue smothers and terrifies.  Smother now, terrify later:  an advert I recommend you don’t respond to.  The terrify part is wondering what will happen to me in a few days, knowing how tired I am now, how foggy and far away.  The crashes are painful to the point of considering giving up, ceding responsibility for my life and my part in anyone else’s life.  To feel calm, to dab at paint, pet the cats.

Ceding won’t make things better.  Life would become harder, which is not that difficult to imagine.  I know in my guts what “hard” means.  Often I wonder why I’m not daily vomiting up the anguish.

I need to summon courage as I go back for another 3-hour block this morning.  I need to tell the client that I’m done for the week, that I get tired very easily and it’s time for a break until next week.  Behind those statements is fear:  fear that I’ll miss this chance to return to the working world where I earn money in order to keep our house.

One more request for the Universe:  please help me present myself coherently, cogently, and confidently.  Don’t let ’em see me sweat.

But strangely enough, when I can become still, I also find the voice of my faith that everything will come in the right order, that I’ll be presented with and take the correct steps to continue moving forward to the less-foggy.  I may teeter on the edge of a crash, but maybe it won’t happen.  I won’t know if I don’t try.

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my reality: brain injury

I have been circling around this writing for at least a couple of months, which means that all day long, I try to find something else to think about.  But, at some moments, the pain and horror of my situation threaten to overcome me.   I must find a way to express the daily realities, to let them wash over and around me instead of smashing me gasping under a wave, getting my face scraped off along the sand.

toasted

toasted

In the summertime, I think, heretherebespiders wondered where my upset was about all that had happened.  I didn’t have an answer.

I see now that the answer lay in the brain fog I lived in for better than 9 months.  The fog has been lifting steadily I see, and especially since about October.

This has been and continues to be a terribly lonely journey.  I have no map whatsoever.

Who can tell me what parts of the aftermath to attribute to the near-death by C. diff or to the systemic chaos and near-shutdown caused by septic shock?  (If you’re curious about the shape of the aftermath over the last year, at the top of the page on the left is the category Illness.  Choose the subhead “somewhere near the middle.”)

The truth shall set me free.  I hope.

The truths:

I have about two to three hours of brain strength per day.  If I exceed that, I become overtired.

Take a long moment right now and imagine having three hours per day to be “productive.”  That includes making breakfast and lunch, laundry, dishes, feeding the cats, and visiting with family at home.   Now add in something enjoyable like art.  How does it all fit?  It fits into a daily dance, a constant choosing.

The hints of fatigue are not broad, so I sometimes miss them.

Or, I ignore them because I just want to be the me of the before-time, with interests and curiosities and friendships and the energy to pursue same.

Brain strength is different than physical strength; brain strength operates the physical strength.  When I start to get tired, the feeling is thus:  every last one of my three gajillion body cells starts to shrink into flatness as the energies are squeezed out from those mini power plants, and I begin to crumble in on myself.

moods in collage

moods in collage

My brain goes vacant, with spaces of nothing between thoughts or conversation, my eyes blink slowly.  I have no idea that my judgement is impaired because, well….

Driving remains difficult and only attempted when I’ve checked internally for energy and tested for slow blinks.   The thought of injuring someone is too grievous to fully contemplate.

Music is still lost to me.  How can that be?

My daily life is a state of being tired.   If I become overtired, I become mush.  I melt.  Tears and sobbing amid confused heartbreak.  Apparently, this is quite normal with a traumatic brain injury.

I live in perpetual remove from the world–if you were with me, you’d see a flat affect, but might think I was being introspective.  But if you know me, you might wonder where the sparkly amusement was, the eyes crinkling as I understand a joke about to happen.

Now you’d see me waiting for you to finish talking, then I’ll probably laugh.  As long as I’ve understood the joke.

With the overtired, the hazy remove from the world intensifies and deepens, so that I’m very far away and it is too much effort to try to understand conversation, and words on a page tumble and blend into blobs of glop (‘though words tumble even when I’m not overtired).

lost

lost

Recently, quite by accident, I heard the best description for all these moments:  the becoming over-overtired is when the battery of my brain runs down.    The tears aren’t depression in the clinical sense.  Recovery time is whatever it is.

I spent a day with a friend several weeks ago, a day I have been pining for–she is wonderful people and has always fed my soul and spirit.

Two days later, I crashed hard, face-down, scraping against the sand, gouged to the bone, as the wave dragged me around.

The crashes are horrible–I want to disappear so Big Mister doesn’t witness the melty goo.  He used to hate it when I would cry; those before-time cryings were nothing compared to how it goes now.  I see the heartbreak in his face.  I want to run and recover by myself, let him not see the crying and agonies.

When I’m over-overtired, mundane household stuff can be beyond my ability.  On a recent night I couldn’t figure my way through putting dishes into the dishwasher.  Tears.  Explanation and departure.

nightmares

nightmares

My fears:

If I slow down as far as I need to in order to remain brain-unruffled, I’m terrified that I’ll just stop.

I will be left by myself in this mess.

The mess will be permanent.

The good news:

The brain fog has been lifting.

I have continued doing art since I began again in late spring, several months out of hospital.

pages and pages

pages and pages of painting

I walk better, needing less concentration.

My verbal language has returned to about 90 percent of the before-time.  I have always said quirky stuff, so it’s less upsetting now.  Mostly, it’s less upsetting because the balance shifted out of brain-addled to more ability.

My written language has returned to about 90 percent as well.  Typing and writing are both still challenging–still I write words backwards or even words I hadn’t intended to write or type.  Forming the letters by hand sometimes comes in unfamiliar patterns.

The massive, nauseous headaches of the last several months are becoming infrequent.

I get the impression that the me emerging from this mess is the sunny, happy child I was:   sweet and loving, with less of the hard person I had become.

But if I’m tired, and struggling to understand, I may explode with the fatigue of concentrating on the moment and shout in frustration.  Probably only with Big Mister, unfortunately for him and us.

I want to live and I want to live well.  That much I have learned in these just-shy-12-months since coming home from a short hospital stay to discover my brains had been scrambled.

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