swim 10 minutes three times a week

That wasn’t it and I crashed.

This is so frustrating:  predicting what is too much.   It doesn’t work this way, the way that would be quite helpful, thankyouveryflippinmuch:  somehow being able to measure energy available, like having a gasoline gauge glued to my forehead.

It’s like this:  one unit of laundry, two units of art, one unit of driving to the library, one unit of swimming, 5 units of sitting.  Now, how long is a unit?  I don’t know, but it’s so short that I’ve never done so little before.

How many units of what kind in a day?  All depends on the moving target.  I still get slammed against the wall of out-of-gas-and-on-my-way-down.

swimming and sailing 1965 and 1970.
The red patch from the Canada Yachting Association used to have a white fabric star in the first box.

Swimming has always been a joy–I even have the little buttons I earned in the 1960s to prove my proficiency.  Should have had a bunch of buttons to celebrate the silly grins from being in, on, or under the water.  I even love the Zen of swimming laps!

 with the Kona turtle and Humuhumunukunukuapua'a

hangin’ out on the bottom of the ocean with the Kona turtle and Humuhumunukunukuapua’a

Learning to dive in Hawaii (visiting from Alaska–mama ain’t no fool!) and having the dive instructor give me the stink eye underwater because I never wanted to surface.

He used to call me a gorilla/guerrilla diver–I don’t think I ever asked him which word he thought of when he’d watch me down there, cruising along in hog heaven, arms relaxed and moving quietly behind me in my self-made current.

Swimming has given me pause only that one time in frigid Lake Ontario after I helped to tow the instructional sailboat off the beach for our return to Toronto Bay.  Couldn’t get my 13-year-old self up the side of the boat.  Drowning was a definite possibility–but I did get help and survived.  <:-D

knock Bozo down and he bounces back!

knock Bozo down and he bounces back!

Now I try again, because that’s how I am:  I feel like that blow-up Bozo doll–you can slug him in the chops, punch him in the gut, or kick him in the nose.  He stands right up again with that silly grin.

True, sometimes he over-corrects and it’s a bit of an eye-opening ride on the return!  (He’s the only clown who has never given me the willies, too.  Please don’t tell me anything bad about the actor(s) who played him on the TV show.)

Now I’m trying 5 minutes of lap swim, which in my weakened state is only 4 or 5 lengths.  Then into the bubbly hot pool to stretch, so at least I’m in the pool longer than it took to drive there.  Maybe I’ll try twice a week and see what happens.

The crashes are so painful that enduring the addled brain-fog that shows itself in melty tears takes more courage than I think I have.

I face my vulnerability–an unlovely sight–and wobble forward again.

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a bad day or two

I have devolved into being a raw nerve, of being a short fuse with frustration at skin level.   Streaming tears of exhausted deep sadness, loss, and despair.  The brain fog sitting and smothering.

I want my life back.  I want this terrible vulnerability to lessen.  I want to live without being flattened by unexpected crash landings.

I want to be able.

Other people hold my hope for a happy ending.  I breathe through moments:  I don’t have enough power to hold firmly to the hope, just enough to get beyond a long moment of despair for the future I have remaining.

Awakenings

Do you remember the Robert de Niro/Robin Williams movie, Awakenings?  I saw it when it came out around 1990, but I’ve never forgotten the miracle-followed-by-heartbreak bit.  Short story:   neurologist messes with brains using pharmaceuticals to reverse catatonia.   Miracle return-to-life followed by lack of miracle.

In my last post I wrote about those 5 days I had recently, 5 days where I had partially emerged from the brain fog of the last 13 months and experienced life calmly and quietly. 

I told about the beauty of calm clarity being torpedoed and the return to the mush of brain-addled anxiety.  Oddly enough, it was in slow-motion:  it took me two days to fully collapse inward after the hate-bomb landed.

One line in that post, a few words only to describe the anguish of the return to the addled state.    The anguish came from observing the descent, of clawing the walls of my dry well on the way down, begging to not go back to the bottom.

I don’t get a choice about emerging into the sunshine or plummeting to the rocky bottom.  I am able only to choose tools to ease the descent and the following days/daze of being.

The last 5 months have been brutal.  That’s the only word I can think of.  Brutal.

I’m doing OK.  Tired, quiet, but returning to calm.   Hoping for more days like those 5 days.  I liked ’em!

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.

Who Can Do This? YOU!!! « P’nina Pedals

JustI stopped in over at my “making room” post and left this link.  P’nina has quite a back story (that includes traumatic brain injury) and quite a front story that includes a long-distance bike ride in Israel!

Update:  I’ve spent some time reading several more of her posts.  You should, too.

Who Can Do This? YOU!!! « P’nina Pedals.

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