August 1, 2013

Today was a perfect day.  That is a perfect day in this new normal.  It still had a bunch of barriers and obstacles, but I managed them, and I had a sense of peace.  Normally perfect days make me a bit nervous, I guess I wouldn't be an inherently anxious person if they didn't and there in lied the beauty of this perfectly not so perfect day.

I woke up and knew it was the last day of swim lessons and multiple times opened my eyes to think there is no way in hell I can get there.  And then this little voice said, just sit up.  That is how we will see, just sit up nothing more expected manage this moment.  So that is what I did, I sat up in bed and got my bearings and then there was the whisper...hydrate.  So I followed, I didn't question, I didn't try and process all the steps in between me and these "early" lessons to see my niece and nephew, I just followed.  Back in bed, juice with salt, hydrate and wait.  I kept glancing at the clock and saw the minutes tick by and I willed myself to not be defeated.  Get dressed, brush teeth.  Okay, I have no idea who this little voice is inside my head, but again I will follow.  And now as I glanced at the clock, it was inching towards 10 am and I knew I still had a number of steps to complete but I forced myself to go back to the baby steps.  I had made chocolate chip pancakes last night for diner...shh my niece thinks I had "vegetable pancakes" so I knew I had those I just needed some protein.  So with my stool by my side I sat and made the eggs, and the clock ticked closer to ten, I just breathed.  It takes 5 minutes to get there and if you only see one minute you have succeeded.  And then there was that calming voice that told me I already succeeded because I felt good enough to try.

I made it to the last ten minutes of her lesson and stayed for the next 30 of my nephews.  It was a perfect cool summer day, and I made the mistake of sitting in the sun of a minute which brought on an intense headache.  But I moved on.  I got home with groceries my mom stopped and got for me and felt dizzy and weak but not panicked.  This will pass.  Bed.  Bed, juice, a bit of coffee and wait.  So that's what I did.  As the day went on I was lucky enough to have a visitor and a hydro-therapy treatment.  I managed to clean the kitchen with my "left to right" technique.  I start at the left side and start doing what I can and if I make it all the way to the right mission accomplished.  Again, these tiny steps that competed a process.  I had the dinner that I made the other night and was lucky enough to be cleaned up by someone else.

Then was the decision, it was 5:30 pm, what I really wanted to do was go to the pool.  Lie in this crisp non humid summer air, read a book, maybe run into someone I know...normal I craved the perfection of normal.  This is where for any one with an illness it gets tricky, you have had a really good day is it worth it?  Will you pay the price if you push too far?  And I determined the price was worth it.  I got to the pool and texted a dear friend I see very rarely on the off chance she would decide this night was also too good to pass up; despite probably a busy day at work, making dinners, picking up children, all the "normal" tough stuff of a mother.  About a half hour passed and in she walks, still wearing "professional" attire with two children in tow.  As we hugged, I said "what a nice surprise, I just texted you..." and she said, "you did?"  I repeat, a perfect day.

This is what now fills me up, these are the random surprises I don't enjoy when I am in Phoenix.  This was a perfect day, and I may pay for it tomorrow and perhaps even the next day, but today I felt like I lived rather than got by and there is no greater gift than that.  This summer it may seem to the outside that I am not that much better because my activities have perhaps decreased, but the difference no one can see is that sense of peace and being present that has eluded me for years.  I have the ability on good days to actually feel present, not count down the minutes or seconds until I can take the plaster of paris mask off my face and get to bed, my body screaming that the sounds, the conversation, the sitting up is all too much.  I have been given moments of calm in this ever changing storm, and I am so grateful for every moment of it, it is the gift that this illness put on a silver platter - the awareness of what it feels like to be well.

August 1, 2013...hope served up on a tray and I took all I could.