June 30

Today, I suffered very little.  Today, I felt strangely close to what I vaguely remember normal feeling like.  Excluding the parts of the day that I limped around a bit after walking Oscar and the bit about having to take a nap after lunch, even though I didn't want to.  When I feel so symptomatic for such a prolonged period and then, the baby steps bring me here, into this foriegn land of "feeling ok", I actually believe in miracles.  Not that I don't believe in real miracles, you know.  I do.  But, this would be just a smallish Marie-sized miracle, not loaves and fishes.  I mean just a few weeks ago, I was in the depths of suffering.  And today, I enjoyed every bit of my day.  Granted, I did not do much, but, I ALSO DID NOT SUFFER.  How amazing is that?  It is comparable to a sunrise, truly.  To a pyramid or a mountain.  It is simply great.  Greater than my lil' mind has words to describe.  I swept my kitchen floor, dusted a few tables, took my bath and did 2 loads of laundry.  I made breakfast and lunch for myself and fed and watered my animals.  I did some dishes and unloaded the dishwasher.  (We had take-out for dinner so this evening, I rested on the couch with Tim.)  So, clearly no huge accomplishments were made here today.  But it feels absolutely joyous to me tonight.  To have had this one day, this break, in this s**t.  It feels like I am leading the dance now.  We are still only doing a slow waltz, but, I am an active dance partner.

Here is the rub.  These many baby steps and careful monitoring that have landed me here in this "feeling ok" area can be undone at any time.  And really by any stressor.  A stressor I bring on myself or one imposed upon me.  That might not be tomorrow, may not be next week.  In fact, I may have a month in this foriegn land.  But, at some point, I will be back in my "homeland".  My new normal.  Symptomatic.  Maybe not all the symptoms, in fact probably not all of them, but, some.  Severity will vary.  But it will happen.  This I know to be true.  And here is where the question of hope arises.  Can I not hope that I will just move permanently to the foriegn land and make a new homeland there?  Is that too unreasonable?  Everyone else I know lives there.  But, alas, I cannot.  Rather, I will not.  Will not subject myself to that.  Shattered hope is very much like your first heartbreak.  The scar is unforgettable and crystal clear even decades later.  I remember that I thought I would DIE from that first broken heart.  I had physical pain in my chest.  Shattered hope is like that.  I think, naively,  I have recovered all that I lost.  That I can now do all that I want to do.  That I can rejoin the world I so miss and the people in it.  And I may have recovered it.  But, in my soul I KNOW that it is not permanent.  So, after so much shattered hope, I now count on losing it all again.  My hope lies in living as full a life as I can during the "feeling ok" times.  I know I will have those.  Lots of them.  I don't know when, or how long they will last.  Maybe a year, maybe 6 hours.  This has taught me the value of a lot of life that I think I probably took for granted before 2005 (my illness onset year).

I feel actual pity for folks who do not believe in a power greater than themselves.  I don't think pity is a very useful feeling, but it is what I feel.  It can't be sympathy for they are not suffering any loss.  They don't know what they don't have.  They think that this earth and what lies on it are all that we get.  I am clearly not of that belief, but this is not about my beliefs right now.  Here is why I feel pity.  When, not if but when, an event happens in the life of this person who has no connection to greater power, let's call him Joe, he can then also only turn to earthly items and events to comfort him.  He will likely turn to chemicals, maybe medicines and maybe not, to try to control and comfort his unfamiliar situation.  He will rage at the unfairness of it and that he doesn't deserve it.  He will become bitter at folks in his life who are still "feeling ok" or seemingly unaffected by this event.  And, in that, there can be hope of no kind.  Hope, I think, is defined by what is bigger than we are, the idea that there is more available to us if we just tap the right barrel.  If Joe only knows that what is available are the items here on the earth, and none of them help him, then really, why continue on the journey.  It's s**t.  Just pain, day after day.  It is only the hope that keeps us going when crap hits the fan.  Nothing else, when you strip away all the fluff and frosting.  Just hope.  But, it is important to be clear about what we hope for, I think.  If Joe suddenly believed, would he hope for recovery, ease of symptoms, what?  That someone finds a cure?  What?  I sometimes think hope can be too wide-sweeping in light of a huge event like fibro.    For me, I have hope for specific smallish events.  (And I KNOW that I am a daughter of God and He will provide me what I need.)  I hope for enough energy and mental clarity tomorrow to accomplish my small to do list.  I hope to finish the 4 partial cane cozies I have begun by next week so I can photograph them and add them to Etsy, that will feel like an accomplishment to me.  Everyone needs to feel successful accomplishment sometimes.  I hope that my uncle settles in comfortably to his new home very SOON and that if I can help him at all, he lets me do so.  I hope that I manage these baby steps correctly so I do every single thing in my power to stave off going back to my new normal.  I hope my cat lives through the year.

It's past bedtime now.  My eyes burn from tiredness.  Thank you all for sharing in my thoughts.  I see my world more clearly as I explain it to you, and therefore I observe my behavior in it more accurately.

Have happy happy evenings and sleep peacefully.