Thursday, August 25, 2016

Curled Up

I watch Sophie curl up as tight as she can at the end of the bed.  I know how she feels.  I would like to curl up and close my eyes and ruby slipper it back in time.  I feel frozen much of the time.  I think the majority of my days are spent waiting.  Waiting to feel well enough and fill in the blank.  Waiting to feel up to eating.  Waiting to feel up to taking a shower.  Waiting for the gnawing cellular discomfort to pass.  Waiting until like a wave crashing over me and takes this feeling away.

This will pass.  Sometimes in an hour, sometimes in a few often in a week.  But it will pass and then some relief comes with no warning and no explanation.  Last night it was in the form of Kopp's custard.     All day from the moment I woke up I waited.  I hydrated.  I took supplements and prescriptions.  I did inhalers and relaxation breathing.  I attempted a movie, a distracting text and phone call.  I waited lying silently curled up and just kept thinking it will pass.  It will pass you can not force it - but it will; you must believe it will.  It will pass if even for a moment.

I had my summer helper arrive at 5 pm to fix me some dinner.  I sat up and stared at the rice and chicken, salad and asparagus.  The same meal I've stared at a hundred times before and I waited.  Start with one bite.  One bite and the next may come more easily.  Slowly making my way thru with the quiet of the room I took another.  Twenty minutes later and a quarter of the way thru it came to me - custard.  I need something dense - so Erin left for chocolate and vanilla and I encouraged myself to take another bite.

When she returned it had been nearly 40 minutes since the plate had been put in front of me and I had eaten a bit over half.  And then began eating a spoonful of custard and my whole body felt like it screamed thank you! We needed calories, density, easy.  Nothing to chew and another fifteen minutes went by and at 6:45pm after an entire day of waiting it all melted away.

I got up and finally cleared all the magazines and catalogs off my dining room table - a task that I didn't want anyone else to do but had alluded my energy for the last week.  I grabbed the frames from the closet in the playroom and my helper put some photos I had ordered two weeks prior into them…the frames that have been in the closet for 2 years.  I threw the cover for Sophie's pillow and a bath rug into the dryer.  And then it started to slip away, and my bedroom called once again.

That is what a day looks like.  It is difficult for me to have people in the house while they are doing - it looks like I am doing nothing - but the nothing is something - it's strategy, it's talking myself off a ledge and it's waiting.  Waiting for a moment to see if it arrives.  

A few nights prior - Monday I was able with my mom to take my friend's daughter back to school shopping.  Start to finish with driving was less than 2 hours.  But I was present - and able.  Not able to switch stores when I realized Nordstom Teen department in Milwaukee is nothing like it is in Scottsdale.  Not well enough to go to the cafe and order a drink or dessert.  Not well enough to drive her myself.  Not well enough to have her come over and maybe watch a movie or spend the night.  But well enough to get the task at hand completed and be present.  That is the thing nothing is like before, nothing isn't strategized or manipulated to appear different than it is - but it must be good enough.

I think about Sophie curled up at the end of my bed or on her pillow next to my pillow and think she isn't thinking is this good enough.  Yet, it is all I need.  So maybe I can learn a few lessons that good enough is often all any of us need.

Tuesday, August 9, 2016


I found this article under "rare diseases" which is probably problem number one…however the article itself is very informative on how the United States really re-named Myalgic Encephalomyelitis to Chronic Fatigue and put all the emphasis on the "fatigue" where all of us living with this disease already know the Fatigue is like the tiniest piece of the puzzle….

Rare Diseases Article…really Rare???

I know for myself yes the fatigue aka mind numbing exhaustion is always a re-bound effect…however the reactive airway disease, constant sore throat, difficult digestion issues, insane food allergies, chronic pancreas pain that waxes and wains, headache with the slightest temperature increase, the sensitivity to smells, irritation with noises….the list goes on and on.

Every day I just can't believe I can not find a solution to get out of this situation.  Most of all it steals living…you have moved into surviving and fake living with the utmost dedication.  Everything is managed and highly controlled and the person you once were is a distant memory to yourself.

When you have an illness there is this desire for our society to remind you then you must "carpe diem" - but a unrelenting chronic illness the only way to seize a day is to find a moment and to work really hard to save up for that moment.

What I miss most lately is eating.  I just got the invitation for my friend's daughter's Bat Mitzvah and I thought mother fucker I am going to miss out on all that good food.  I'm not Jewish but have managed to amass a large number of Jewish friends - and I think in part for my ability to devour brisket and kugel and my happy indulgence of the Jewish mother feeding me.

Unless you have food allergies you can't imagine when food now has become a war zone of land mines.  The basic necessity of life has betrayed me…how to you begin to fix that?

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