A Terrifying Thought — The New Norm?

I just had a chilling thought:  What if this is the new norm?

Should I move away from discovery and seek acceptance of my new standards of living?

It has been since the middle of December 2016 since I have been able to exercise free will over my body.  This is approaching nine months.  And, frankly, other than levels of pain, my physical abilities are not increasing.

Currently, my limitations prevent me from being gainfully employed.  Even the simplest things are challenging.  I’ve had 1/2 a day of mental clarity since December.

This past Sunday and Monday, I had the largest spasmodic event since the pump was implanted.  As I write this, I’m swooning from the affects of one that lasted over a day.  I have pulled muscles in several locations in the left side of my body.  I have limited sensations in my periphery and my left hand has been on fire since the massive spasm last night at 9 pm.  Icing it helps, temporarily.

My question: Should I be working to accept my current set of limitations?

Monday I had a doctor’s visit with my neurologist for another Intrathecal Baclofen increase.  During the visit, I was informed that our target dosage was no longer 300 (I’m now at 350 mcg/day).  We are setting our target at 750-800.  We were trying to do increases every 2 weeks… The longest I’ve lasted was 9 days.  We are now going to move at a one-week interval of increases.

Let me explain what this means:  I go in, they adjust my meds that get automatically injected into my spine.  My body takes about 2-3 days to adjust to this new level.  During this time, I have no clue what my abilities will be as I take it easy.  It is not uncommon for me to sleep almost every hour of the 36 hours following the increase.  The new level drives my body crazy.

I recover from the increase and I have a time period where all is good, and I can do limited things.  Then, a spasmodic event occurs and I’m down.

The major affect the increase in ITB has had is the frequency of these events have decrease and the clarity that I have during them has increased…. as well as their length.  It seems that the increased levels of ITB have enabled me to better experience my body say it hates me.

At the rate we are now going, it could easily be another two months before we arrive at the target level.  At the desired rate, it would be four months.  Do I celebrate the anniversary of my debilitation?

To say I am mentally exhausted is an understatement.  I am absolutely appalled at the media and what is happening in the world around me and yet, I am unable to summon the strength to converse about it.  Even the simplest engineering tasks take me an incredibly long time to complete, as I screw more stuff up than fix.

God is showing me humility.  Maybe I should stop fighting and work to accept that this is what I am.

Thank you for reading.

God Bless you all,

Jay