Invisible Illness: BiPolar and Brain Aneurysm combined

I’ve been told that I’m a difficult patient. Hmmm. Not a shock.

Several months ago I suffered a cerebral aneurysm. It began in August with a trip to the emergency room, an excruciating headache and vomiting that made childbirth look like a walk in the park. (I can say that-I’ve got two kids.) It took several months of diagnostics; CT scans, CT scans with contrast, MRI’s, MRA’s, neurological workups, an angioscope, neurologists and neurosurgeons collaborating, to determine what and where the issue was. Part of the complication of diagnosis was the assumption that my bi-polar made me an unreliable reporter of my symptoms. Seriously. I was told more times than I care to remember that it was simply a stress-headache.

But the angioscope was objective enough to get noticed. A bubbled vein below my frontal lobe, sort of between and behind my eyes. Needed to be clipped. A six hour surgery with two operating neurosurgeons to, well, no details. Just know I have a seven inch scar on my scalp and screws in my skull.

What does this have to do with bipolar? Well, the neurosurgeon told my fiancee that they had no idea how lifting the brain to clip the aneurysm was going to affect the bipolar. They didn’t tell me this. Apparently, no one mentioned it to the ICU nursing staff. In the three days I spent there, I was apparently impatient and irritable. I don’t know if it was the surgery or the meds that keep me from remembering those three days.

When I came home after three days, my fiancee stayed with me for a week. I didn’t know how much he felt he was walking on eggshells. He didn’t know how often I was biting off the tip of my tongue to not be snippy.
I just kept hearing “you’re really not a good patient”. I probably wasn’t.

But here’s the invisible dilemma that both aneurysm and bipolar share. They are not visible. My head scar is covered by hair. And though the neurosurgeon explained the impact of surgery on the frontal lobe, the damage to executive function, the inability to plan and complete tasks, the loss of short term memory, and the ongoing fatigue…people forget. It looks like nothing is wrong, ergo everything should be back to normal.

But it’s not. Not only has fall come and gone, the Seasonal Affective Disorder has hit. Christmas is overwhelming. Bipolar depression has set in. And still the fatigue.

So, I push on to be ‘normal’. Forced smiles, accepting invitations through clenched teeth, and hiding the overwhelming exhaustion as much as possible.

Grinding on trying to make the internal behave as the external appears capable of.

Stop “Should-ing” on me!

Learning to balance the demands of one’s own daily life is sometimes difficult. Setting priorities, making decisions, and completing tasks can be a daily challenge.  When the deep depression of BiPolar strikes, it is a monumental effort to complete the simplest chore.  When the high of mania or hypomania hits, it is nearly impossible to focus on one task long enough to complete it.  So the best measure of getting through the day is simply doing what one is able to do.

Well-meaning friends, or overly-critical controlling participants in one’s life can truly complicate the ‘getting-through-the day” process.

With the best of intentions, the well-meaning suggest activities, which one does not have the energy for.  They recommend processes that are overwhelming.  They attempt to bring one to recognize or make insights into patterns that are beyond the scope of vision one has at the time.

The less-well-meaning participants in one’s life do the same types of things, but with the intention of controlling, demeaning, isolating, or belittling. They recommend doing more, doing better, and doing things their way.  They may say they intend to help, and at times they may be believable.  But in the long rung, their suggestions are made in order to benefit themselves.

In both scenarios, whether coming from from a well-meaning friend, or an overly-controlling partner, the damning word is “should”.

“You should do….”  “You should try….”  You should do it this way…”  “You should improve…”  “You should do more…”

And the harder ‘should’ trap is the one we set for ourselves.  When we began to “should” on ourselves, most of the time we are actually devaluing what we have done or how we have done it.  “I should do more”, “I should have done it better”, “I should have done that (other task)”. We forget to acknowledge what we have accomplished in the light of what we have not.

But the secret to killing those “shoulds” is this:  remembering who we are, celebrating what we have accomplished, and giving ourselves praise and permission to do things the way we choose to do them.

So, I vow to tell all;  the well-meaning, the controlling, and myself; “Stop should-ing on me!’

“God willing, and the creek don’t rise.”

There’s an old phrase that hes been rattling around in my brain for a few days.  I’ve heard it a dozen times or so, mostly from an older generation.  It’s a response one might get to a request for help, an invitation to be somewhere, or a query about someone’s ability to do something.  “God wiling, and the creek don’t rise” is a way of saying, “I’ll do what I can” or “I’ll do what is in my power to do.”

What I love most about this phrase is how it reminds us that we aren’t always capable of doing what we would like to be able to do.  Whatever one’s stand on religion, it is a catchphrase that acknowledges that we are not all-powerful.  The unknown, the unexpected, even Nature can interrupt our best intentions.

I know that I can get caught up in things I think I should do, or want to do, or even think I need to do.  But, simply enough, sometimes the unexpected gets in the way.  A flat tire, construction on the highway, illness, or even schedule conflicts can derail the best of plans.  When that happened, I used to get angry, frustrated and upset. It was about control.  It was about my agenda being disrupted.

But when I step back and remind myself “God willing and the creek don’t rise”, well, it helps me to see the circumstances that are thwarting me in a larger perspective.  If the creek rises and you can’t get out of the driveway, there’s nothing you can do to change it, until the creek feels like receding. If it feels like the universe if conspiring to prevent you from accomplishing a certain task, well, sometimes the universe is right.  Patience, resilience, and ingenuity are better mental states than rigidity, frustration, and stubborn determination.

The ‘Structure’ Trap

All of the therapists, psychologist, psychiatrists that I have worked with since my bipolar diagnosis in 2004 have encouraged me to build a daily routine.  And it’s helpful.  It gives me a sense of stability and predictability, as well as a sense of accomplishment in completing tasks each day.

There is no way you could mistake my house as one of a person with Obsessive Compulsive Disorder.  The shelves need to be dusted, and with a big hairy dog, a cat, bird, two teenagers, and a woodstove, daily maintenance of sweeping the floor, changing the litterbox and vacuuming the hair off the couch is just about enough to keep it looking decent.  But I sure wouldn’t want to eat off my floor!

The benefit of a structured daily routine, keeping the house neat and organized, helps me monitor and decrease the chaos in my brain.  The racing thoughts, ruminations on past traumas, and harm-avoidance worrying about the future can be significantly more manageable if I keep the environment at home peaceful.  But at different times each year, like mid-winter and early spring, I find myself caught in an increasing spiral of completing my daily routine with just a little bit more rigidity, just a little more exacting standard of completion, just a little more emphasis toward perfection.

It could be “spring fever” from being cooped up due to the winter weather.  It could be the onset of Seasonal Affective Disorder, which challenges me each season.  Whatever the cause, when I recognize the cycle I need to get off of the rollercoaster.  I need to take a day to find different activities, whether cleaning out the garage, moving around the living room furniture, or planning a room renovation.  Creating structure for myself is beneficial.  But when the structure takes on a demanding life of its own, then it is a trap whose power must be diminished so that it returns to being a helpful part of my day.  Structure should not produce anxiety and irritation.