Thursday, May 11, 2017

"typical day"

While I was lying in my towel after taking a shower I felt like I may have the words to describe what a "good"/ "decent" day so far is like...I didn't sleep that great mostly due to a shoulder situation which is different story but needless to say I have about 10-15% mobility w my right shoulder, and actually right now typing may not be the best idea...and yes I'm getting an MRI...moving on...

 I woke up about 7am went into the kitchen and got some juice.  Went back to bed, woke up at 8am and thought I'll go turn on the coffee pot.  My mom with a religious fury always has coffee ready to go.  I went turned it on and then debated...if I go back to my room it might be too much to get up again - so I sat on a chair next to the kitchen.  I didn't hear it click on so went into the kitchen and realized it wasn't set big deal.  I open the cabinet and see the grounds are on the upper not lower shelf..that makes me tired the extra reach.  I go to the left drawer where I last (a year ago) saw the scoop and it wasn't there, that makes me a bit fatigued.  I look up and see it on the shelf next to the coffee cups..I grab it and the filter put the filter in and that's it.  All of these menial tasks early in the morning are too much...I debate do I finish or not ...I stare for awhile immobile at the coffee machine and go through the next steps.  How many scoops have we been doing 6 and 6 water?  That means I need to go get the water, fill it, I begin to open the jar with the grounds and like a little league baseball team with a run limit - I call it.

Looking good for 14 !!
I'm not angry, I'm not upset, I'm not really even that defeated.  I sit in the chair decide I can't stand the news so will watch trashy NYC Housewifes from last night and wait.  My mom gets here, feels bad, no reason to feel bad ...she waits on my like a handmaid.  She makes the coffee we watch NYC she makes breakfast, I eat...still on the same chair.  I realize it's quite nice out and go sit on my chair on my front porch.  My mom leaves for awhile.  Sophie decides to get a burst of energy and I feel well enough to follow her around the yard as she is running free around the house.  Walking around before noon, this is a big deal.  I make a mental note and don't take it for granted.   I say hi to my neighbor.   I see my sister and my niece in their driveway, I yell a few times but someone is doing yard work...I debate the walk to the fence - but it feels like to much effort.  I video Sophie and then can't find her and realize she has had enough and is in the house.  When I come in she looks at me like alright enough already back to bed…

I help her up on the bed but I'm feeling pretty decent so decide to take a shower.  Showers have gotten much more tiring without the use of my right arm.  But it still feels good, I'm not too exhausted and then somewhere after shampooing I make a conscious decision that conditioner would be too much work.  Then there is the stillness.  Much like staring at the coffee.  I feel a bit trapped.  I know I need to wrap it up but all the steps to get out of the shower I tick thru my head.  Turn water off, open the door, reach for the towel, try to put towel on without hurting arm, put small towel around hair, dry off.  So I just stand there for awhile in limbo.  Knowing the longer I am standing in warm water the more fatigued I am getting but the idea of the next steps are quite overwhelming.  So I tell myself like a band aid rip it off don't think do the first next necessary thing.  And I do.  I turn off the water....and the next steps I take one at a time.  I open the door step out, grab the towel, put it around  me and my head, already knowing brushing teeth is too much.  I open the bathroom door and Sophie is staring at me and I walk the 5 steps and lift her and crash onto my side.

She comes straight to my face, kisses my nose, licks some water off my hand...feels like she's checking on me....I lie there for about a half hour.  I'm listening to a playlist, Adele is on it and for some reason it hits me that Adele and I aren't the same age...I'm turning 45 in a few days.  This cracks me up for some reason..I have no idea why. A text brings me out of a trance to reflexively grab my phone.  I text with my aunt for a few beats.  The phone is in my hand so I realize best to call my mom now, if I put it down not sure when I will have the energy to grab it again.  I ask her to get me some lunch...which lately the most edible has been hot dog and Jimmie Sundae from Gilles.  I sit up pick out some clothes...get dressed.  My hair is still unbrushed and not in a messy bun b/c I can't tie my hair up without assistance now due to the arm.  I sit back in the chair and decide to type this and wait.

My mom arrives.  I putzed around on FB.  I've sat long enough to get up go brush my hair, bring in the rubber band and she does my pony tail for me.  Often like a petulant child I say ow or that's too low or too high...the frustration getting the better of me.  See I have a nervous habit of taking my hair down and back up that I use to do thoughout the day...not anymore.  I walk over to the dining room table where my makeup bag is and face moisturizer.  I sit on a different chair.  I can't stand to look at my face, I can feel it sore and red.  Detox reaction.  It seems to go in phases, and I know if I'm not super on top of my tincture and pills to help my kidneys detox my face has this rash.  I routinely set about to moisturize, put on some makeup and lipstick.  Back to the other chair.  My mom brings me lunch.

This is my day, this is a pretty decent day.  I have not eaten either meal in bed....highly unusual. I have a friend stopping by at 2:30pm.  I have my college caregiver having her first day today because my parents have a function downtown, leaving at 5pm so I need to have someone here to help with dinner.  I hate that idea, but I know better not to pretend I won't need the help.

I've decided to start Twin Peaks on Netflix since it's coming to Showtime.  Today so far had pretty many accomplishments that my old life would laugh at calling them accomplishments.  Lately I vascilate from ...vascilate is spelled wrong...spellcheck isn't working...I don't have the energy or quite honestly care to google it....but back to "vascilating" between a longing of my old life that is visceral in nature, as if that whole other life was a mirage and the person living it I'm not sure is exactly the same or unrecognizable.  My liver hurts.  I know most people don't know what that means, but it does it feels swollen and irritated.

It's friend will be here shortly.  I am going to figure out how to get the video I took of Sophie on this blog.  And that's a wrap.  Tomorrow will look similar to today.  Maybe better maybe worse...

Thanks for reading - my brain is tired and the thoughts quite uneloquent...typo...oh well...see the beauty of this illness, that's the small stuff I don't sweat the small stuff.  xo xo H

PS  This past Saturday or maybe it was Sunday...I made it to my nephews soccer game on that beautiful day...just sitting there on one of those outdoor chairs just like anyone else...

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