January 5, 2013

Surviving 2012, chronically

The roller-coaster that was 2012 ground to an end after one hell of a year. Most dominant were my health problems. It seemed like the last quarter of the year, with a job change that allowed me to work remotely most of the time, could only bring improvements. But alas, the best laid plans, hm?

A hopeful and determined-to-do-better foray into self care and pain management set off an unanticipated avalanche. Instead of simple relief, I was gifted with a swap of symptoms, incredibly even less manageable and less tolerable than the usual bone-wrenching pain, and unending marrow-deep fatigue.

In my short educational course on chronic pain given by pain specialists, we learned that pain uses the same neural pathways as depression. People who live with unabated or untreatable chronic pain, pain that lasts more than (3, 6, 12 months, or beyond the “expected time to heal”, I was told, are almost certainly depressed: biologically, your brain has been using a pain/depression pathway repeatedly so it’s essentially programmed depression into your brain; realistically, being in pain constantly is draining and having a constant limitation is frakkin’ depressing!

You may have no control over the situation, the pain limits your life and abilities in ways you didn’t anticipate, cannot or do not wish to become accustomed to. “If you’re not depressed now,” the pain specialist physician said, “you’re lying.”

The thing was, I understood the mechanics of why pain = depression thing intellectually.  But after nearly twenty years of living with unceasing pain, increasing pain, discovering and failing to surmount increasing limits, I had not yet *felt* the deep-down, isolating, spiraling, rending drag of depression.

I’ve seen it before. I’ve had friends and family drag those demons, firmly attached to their ankles until they finally made it to the other side or curl up in their corners until it all went away. But, for whatever reason, in the face of unrelenting pain and everything else life was throwing at me, I didn’t feel the bite myself.

The pain was a deciding factor in life. Horrible when it flared, but I could trudge through, finding whatever it took to do what I needed to do. (Never mind what I wanted to do. Never mind what I wished for.) I was sad, of course, and sometimes bitter.

Angry at times. I had lost what felt like almost everything: my intended career path, my ability to run, my confidence in my physical strengths which had dwindled down to nearly nothing, my hobbies, my ability to breathe, my stamina to live a full and fulfilled life. I have to question every single thing I do and whether it’s worth the energy loss.

But the anger, bitterness or sad would ebb, and I’d move on. There was work to do. Family and friends to care for. Things to fix.

Until now.

~~~

This fall’s tradeoff for physical functionality being able to get out of bed, walk for more than a few minutes without stopping for breath, not having to hold my breath and force myself power through when the price I pay is being flat on my back for hours or days was mental stability. My center of rational gravity was totally AWOL, disappeared into the quicksand mire of depression and suicidalism.

Each day, though nothing was worth it anymore, though two hands took away and give a finger-length back, a ghost of grit-it-out remained.

At least I can work.
At least I can breathe.
At least I can cook a meal.
At least I can wash five dishes.
At least I can be useful.
Sort of.
(Not really.)

Over and over, day after day, staggering under an assault the likes of which I’d never experienced before, the betrayal of my body seemed like a bargain in comparison to the betrayal of my mind, washing out the foundations of my faith, my drive, my self worth.

Divided against myself, my selves hung, suspended into immobility. The only certainty – I’d done my duty and more than done it and these tatters of my life were a testament to how little my efforts were worth.

Personality, drowned in lassitude, watched the body trying to focus on work, focus on making a dinner, focus on clearing up after.
Body, an automaton, performing duties that look “normal” to keep the world at bay, held off the final dregs of failure, shut out the chant of the mind.
Mind, railing against the life it’d rolled dice for, bore under Atlassian pressures for, sacrificed for. Thrown beyond not wanting to live this life, it couldn’t comprehend anything left, only myriad reasons for leaving.

Every natural instinct was dampened, every nerve and synapse firing prematurely, reactionary and flaring.

Life, I viewed through layers of alternating fury and despair.

~~~

In those muffling and stifling layers, I knew this was off balance. I just didn’t care.

I never don’t care. I care about many things: social equalities, personal achievements, the environment, driving my career, innovating, growing as a person, helping others. Cleanliness, neatness…

But with my mind fractured like this, I was my own worst nightmare. A cripple in every sense of the word. I didn’t have any desire to try when trying was just pain, draining me, like cold death.

For weeks into months, I just held on, anchored by a slim thread. By an unreleased breath. I wasn’t achieving. Wasn’t innovating. Wasn’t happy. Wasn’t resigned or at peace with the illness anymore – I was angry that this was it and none of it worth a thing.

~~~

This was incredibly frustrating for PiC. Because I couldn’t fathom making plans for a day, much less a week or month out. Because all he could see was me, huddled, in the corner. Because he couldn’t hear or understand the litany in my mind. No matter what he said or did, it hurt.

I literally didn’t even have words or voice to speak most days. Because I hated needing help, I hated getting help, I hated that deep down I was convinced that nearly no one believed or understood I had a legitimate problem I couldn’t “just deal with” or “manage.” For certain, no one could comprehend how I really had to live to survive, the world at large just assumed it was easy.

Knowing that I was a frustrating, horrible person to live with, despair or not, underscored the sense of loss. This wasn’t how it should have been.  He deserved better.

~~~

For so many years, pretending to the outside world that I was fine, strong and capable was my coping mechanism. Never a smiley chirper – not unless something made me really happy. But fine. Strong. Competent. Unflappable. Partly because no one wants to be around a chronically sick or limited person, accommodating the cripple you’re probably not convinced has a real problem is a pain. Partly because constantly needing accommodations made it more real, partly because if I pretended I was fine, for a few minutes, I could BE fine.

That was maybe not the best way to deal with it. Certainly not for communicating about an invisible disease. But it got me through so much. That and not knowing how to give up.

Then Mom’s passing knocked everything out from under me.

Her support, the sensible loving guidance, I hadn’t had in nearly a decade. I had to think to remember the last time she could travel, could enjoy life, could have fun with me. But I still hadn’t given up, I was certain I could get my Mom back. And I was wrong. For almost a decade, I’d been wrong.

During that time, my sibling’s ups, downs, and ultimate descent into a mad babble – everything I’d done with him was wrong too.

My family, demolished. My strength, gone. My stamina, a faint memory. My future, what future? What future could rise from these ashes?

What else had I been wrong about? Had I done anything right?

~~~

Finally, I gave up on those medications meant to bring me peace, a devil’s bargain, a mind for a body, that revealed a Canto of Hell heretofore unexplored, and took my chances alone, unaided, unbuoyed.

How much worse could it get?

Pain rose and fell as it would. Day after day, I skipped the usual doses until it was unbearable, until I couldn’t move for the lances of pain.

And slowly, pieces of my mind, my self, joined disparate and crackly ends back together. Some quietly, some, continents crashing into each other. The bonding is still fragile, they shiver under stress. But the ragged, jagged edges are less exposed, less a raw nerve laid bare.

I’d never given up before, not even in the darkest nights. So I don’t exactly know what this path will be. How and when it’ll zig, zag or drop out from under my feet.

But I think I remember how to keep moving. That muscle memory may be all that I had left, last fall. And that may be all I need. The worst might be behind me now. Maybe. I don’t know.

Either way, I’m still here today. And I’ll probably be here tomorrow. And that’s not nothing.

~~~

Insight to living with pain, by others:

Katie at Girl with Red Balloon: life with constant migraines, and risk of hemorrhaging thanks to brain

Tessa: writes an incredibly apt comic strip on life with chronic illness.