I don’t know how to do this. I don’t know how to do nothing. Dr. Bonilla prescribed the strict avoidance of a crash. I understand I can’t run (oh how I miss the endorphins). I understand I have to minimize stress (I don’t work) but I also have to find a way to exist within these parameters.
I’m only playing doubles tennis. I’m only doing easy yoga. I’m only walking the dog slowly. I can handle this life style change knowing that it is temporary. Dr. Bonilla informed me that, because I have the remission type of ME, there is a good chance I could recover completely. Honestly, I don’t know how to do less.
I haven’t felt better. There’s still a particle of hope but it’s not as compelling as it was during my office visit at Stanford.
Today, I am so fatigued I want to cry. Yesterday, I went Christmas shopping with my friend and our daughters. I had to quit and go home. My friend has MS and understands.
The day before that, pain pain pain pain pain pain pain -relentless pain through my neck and the back of my head. Aside from quelling the nausea, nothing helped.
I’m considering applying for disability but it just makes me feel bad. Some days, I’m ok but I certainly am in no position to commit to any type of regular work-and I loved my job teaching. The position I’m most familiar with these days is reclined in my car, sneaking naps. Or ear to phone, clandestinely sending our dog to the play place or asking the cleaning people to accept cash under the table, and away from my husband’s discretion, to help me with the laundry that piles up.
I’m still faithfully adhering to the Stanford protocol but no breaking news to report yet. Oh-and I apologize for the delay in posting. Every moment I feel well I have to address all of the other things on my “to do” list that I’ve neglected. The last thing I want to do when I feel well and have energy is sit and write. I want to be OUTSIDE playing! I have had some good days but I’m not sure if I’m experiencing any considerable changes for the better.