Had another video appointment with the occupational therapist earlier today and I've been released following 3 months of work with her.
I have also been reassured that I can call or send a message anytime with questions or concerns.
I have also been advised to continue logging daily experience.
A number of things are associated with daily experience:
-- remaining alert and aware of my top 3 signs of fatigue
-- prioritizing (must dos/like to dos/defers)
-- general notations of activity
-- pulse-ox monitoring as needed
Because I had been primarily sitting most of the day, prior to being referred to the ME Specialist and then onto the OT, I thought I remained in a CRASH.
Today, the OT explained that I was no longer in a CRASH and may never be able to tolerate sitting all day again. She explained that part of the reason that I did crash, may be attributable to the fact that I continued to sit and not lie down.
She also said something that caugh my attention: sitting requires 25% less energy than standing.
In recent months, I think the longest I've sat in a regular sitting position without my legs elevated is maybe an hour or two. Otherwise, I'm lying in bed, reclining on the couch, or sitting on the couch with my legs elevated.
It has been necessary to recline more and I've been retreating to bed earlier in the evening. I have a pretty clear sense of why. A couple of things come immediately to mind.
When the OT informed me that I was no longer experiencing a crash, she also congratulated me for learning to live within the body's energy envelope.
That's a bittersweet
So, looks like it will continue to be a very restricted life ... lived from the bed, the couch (reclined or legs elevated) and, during moments of strength, from a chair. And, let's not forget ... the patio lounge!!
Have to admit that it does feel good to be able to manage the stairs and not feel forced to use the 3-in-1 commode.
Yes. It is the little things.