June 2014 - another random late night

I have taken a series of baby steps forward followed by giant steps backwards for many months now.  Today, I can say, I did have markedly less pain.  It feels like one extra baby step got snuck in.  But to do this, I am literally not leaving my house more than twice a week.  Sometimes, only once a week.  I do not expose myself to many other people, or even to the weather.  

There is a huge sense of loss in the fact that it is now June and I realize that last year by this time, Tim and I geocached every weekend, dozens of caches at a time.  Now, I am nowhere near being able to tolerate or enjoy that.  I rode the MITS bus to a farmers-market at least every other week.  That would be just misery this year.

I sort of feel stunned by the hugeness of the grief of it.  Everything I am missing.  everything that I choose not to expose myself to because of negative consequences.  And for me, memories of negative consequences seem to stick around longer too.  Maybe I have fewer opportunities for delightful positive ones to fill in the memory picture so the negative ones seem bigger than they are. 

I continue to really struggle with anger and sadness.  How I hate not being able to do things I want to do.  Like walk the dog, make a new recipe, scrub my kitchen floor.  Not outrageous things.  Not roller coasters.  Just regular, run of the mill life.  Out of my grasp.  

I am more symptomatic and for longer now than I have been for a few years.  I did have a sort of remission of symptoms in 2008 when I finished college and got married and went to grad school.  Maybe this year is the opposite balance of that year.  I am sitting the year out at home instead of doing really anything.  

I do not think I will grow old.  I think my body, as sensitive as it is, will be done long before then.  I don't think it will be able to handle what I have and the frailties of old age as well.  It is actually sort of relieving to realize that. I am desperate for relief.  I never thought I'd actually reflect on that topic in that way but, you start to wonder just how much pain a human being can tolerate day after day before the brain just says, OK, we're done now.  Lots of people get tortured very severely and survive. But, I don't have any hope that the torture will end.  Just that it might ease up for a bit.  I will just have to hold on to that bit of hope.  

Here's hoping for another baby step forward tomorrow.