Shape Shifting

This disease is a shape shifter.  On the whole, I’ve had considerably more good days than bad days since I started following the Stanford protocol.  By the way, I’m not sure if Stanford protocol is a living term but I don’t know what else to call it.  Dr. Bonilla cautioned me to avoid any crashes.  I have scaled way back on demands I place on myself and have tried to bring awareness followed by a slowing-down of many things I do.  For example, instead of frenetically folding the laundry as if I had to perform all life tasks by daylight, I just slow down a little.  I think it’s helped.  This morning, I was running late to take my daughter to school.  Instead of becoming agitated with myself and with traffic lights and with other uncooperative (because don’t they know?!) drivers, I thought-I’m late.  We are going to be late for my daughter’s 118th day of sixth grade.  It’s OK.

Of course, such a personality and lifestyle overhaul, does not come overnight.  I just yelled at one of my three dogs for bringing a dirty stick into the house, despite walks and available bones.  Ommmmm, practice not perfection.


I’ve had a few crashes lately.  Most notably, after a road trip during a rather stressful Christmas (feuds, aging parents, funerals, more feuds, factions), I guess I was pretty emotionally exhausted.  I don’t believe I did too much physically to warrant a crash, but emotions are harder to control–those uncontrolled variables, right?  I took a few group tennis lessons but never even perspired.  The day after we got home, I turned to my husband and told him I thought I had the flu and that is what it felt like.  I felt like I had contracted to worst flu ever.  I also thought, it’s just the flu, so carry on and do life with the flu.  By the time I got in my car, the daylight and the bright white snow coupled with a beating and gnawing pressure in the front of my face all the way around to the back of my neck, had me nearly in tears.  Then came the nausea.  I carry a bottle of Pepto in the car but it was frozen!  YUM!  I had to abort all missions, arrange for everything on my schedule to be wiped clean so I could go home and lie in the dark with a heating pad.

The good news?  The next day I was fine.  I didn’t have the flu, I have ME.  It just changes, shifts, baffles, eludes, toys and mimics.  It’s also great news that IT ONLY LASTED ONE DAY.  In the past, crashes lasted longer and were far more frequent.  Yesterday, I had a bit of a crash too…pressure in head, heavy with fatigue but not quite as bad as the crash a week prior.  Nevertheless, I had to move things around the calendar, apologize for not fulfilling commitments (which I hate–not the apologizing but the thought that my illness may be misinterpreted as flighty and unreliable).  Again, I woke up the next day feeling well.

After watching Jennifer Brea’s Unrest, I feel blessed, lucky, fortunate, grateful, scared and a deepened sense of compassion.

My next appointment at Stanford is in March.  Until then, I’ll continue to be aware of physical, emotional and intellectual activity.

Thank you for reading.  Sometimes that’s all you can do!

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