Realizations

I seldom go anywhere at all anymore, save the grocery store or to pick up a prescription.  And I’m getting some help a few hours a week starting tomorrow.  But my dad has been in town for my niece’s graduation so I did more than I’m used to, and last night was really bad, physically.  I almost went to the hospital it was so bad.  The pain, the burning, all the way up in my arms, was atrocious.  It was a long drive (I didn’t drive but the ride was difficult) and by the time I got there, it was good just to stand for a few minutes.  And then it started to ratchet up, but I didn’t notice until my nephew took me home when that happened and why.

I am so use to isolation; it’s beyond difficult to be with people, especially a crowd.  The noise is difficult because of my hearing and the noise in my ears.  Ambient noise is really hard for me to deal with. It’s so loud to me I can hardly stand it.  I could not hear the people sitting right next to me; my dad, and two dear friends. I finally went upstairs to lie down, but it was there that I thought I needed to go to the hospital.  I was scared to death.  When I get like that, I often ask myself what I am afraid of, but I could hardly do my little tricks.  My friend Leslie came up and just put a hand on me to help my breathing slow.  And the neuropathy (burning) in my legs and now, my arms, is very bad.  And I've got a knife-like pain in my left hand.  Like the tip of a knife going into it.  Fun stuff.

I felt awful about having Ben take me home, for he had just gotten there a half hour earlier.  He assured me he actually wanted to leave and I believe him because except for NF, we are a lot alike.  He is a dear man, and kept one hand on my leg or held my hand all the way home.  And he stayed and visited for a spell too.  My friend Leslie called later and we talked about what happened.  She notices stuff that, while I am aware of, sometimes I am blind to in the moment.  She said it started getting bad when everyone was talking about how busy their lives are.  I told her that I literally did not hear those conversations, and I didn’t.  And I’ve talked to her about how hard it is for me to hear people talk about their lives.  But being thrown in a group of busy people is very hard, plus I’m use to isolation so there were a lot of contributing factors.  Truth be told, I just wanted to see my dad, and there was almost no time together this trip.  Neither one of us was up to nor able to make the trip to see each other, even though it’s only a 45 minute drive.  A long 45 minutes when you are in pain.

It is so hard to remember to breathe during these times of extra stress.  Yes, the disorder is progressing, and rapidly.  But other things that are a bit ambiguous contribute to the pain as well.  I know that, but it’s putting the brake on that is the challenge. I need to meditate daily, sometimes twice a day, even more if I can.  I need to not get stressed out so easily…and new things make it hard.  Having a stranger come in to help me staring tomorrow will be difficult.  I have a full spinal and brain MRI coming up the second of July and I’m stressing about that (two weeks ahead of time!!  Hey, avoid the rush, right?) which is nuts.  I’m stressed about my digestion and how almost nothing works anymore; will have to resort to the shot (specifically designed for opiate users) soon, and that freaks me out.  I’m over the moon and need to come back down to Earth.  Phew.

G-d grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

No truer words have been written.  Realizing what it going on is the most difficult part.

 By the way, if you haven’t seen it, rent or stream “Music Within”  It’s’ an amazing story about the guy who was behind the passage of the American with Disabilities Act.  Very moving.