The Home Stretch is Rough

I’ve been holding it together. Mostly. The two month flush is for real, though, and I’m back to that place where I feel like my body is just out of fuel.

I’m off work today. I scheduled a bunch of random vacation days, now known as days that look like most other days but now with less guilt, so I planned to take it easy. I was going to allow myself a bed day. After the busy pace of the last week, I needed it. My mom, though, needed to get out of her house so I rallied to meet her for lunch. And by “rallied” I mean I got out of the bed, put on yoga pants and brushed my teeth. I didn’t even look in the mirror. My bedhead today is epic.

We had a lovely little lunch. Nothing too taxing. My mom saw me struggling to get across the parking lot to the restaurant and she said, “Shake it out. Get some movement in those bones. That’s what I keep telling your dad.”  I smiled at her. If only she knew! There was a time that shaking it out and getting moving really did help. That time seems to have passed. Now, literally nothing helps.

Late last week, my new primary care doctor was talking me through my medical history. What a walk down memory lane that was. I remember her saying to me, “So you don’t feel rested even after a good  8 or 9 hours of sleep?” I kind of laughed at that thought. “I never feel rested. I pretty much never feel rested at all. Nothing helps.”

Exercise might help, everyone says it does. How do you do that, though? When do you do that? I sincerely can’t figure out how that would work. I can barely drag myself up and down the steps to do the laundry. How funny…I’m out of yoga pants and pajamas so I am currently doing laundry. Very slowly. I make it down the steps long enough to sort, toss a load in and rest. I make it up the steps to rest long enough for that load to get clean before I have to climb down and back up again another time. Parsing out tiny pieces of the day between times when my body tells me it has to stop for awhile before parsing out the next tiny window of activity.

I tell myself to stop it. I have to get through this, this super shitty very long several weeks where my body has hit “E” and is literally trying to operate without fuel. It’s almost over. It’s only another week. A little over 7 days, actually, where I can give myself a pass and just try to keep up with what life I can until the day comes when I get juiced with something new. I have no idea what the new goo will do or how I will feel once it travels its way through my bloodstream, but I have to believe it will help me feel better than this. I’m kind of over this, to be really honest.

I was told to prepare for a long day at the infusion center on May 8. I have my ride lined up. I’m all ready in every way possible. Now I just have to look these next ten days or so in the face and keep moving from point A to point B even if I have to rest a really long time in between.

Get your bones moving, she said. Shake it off. Damn. I wish it was really that simple. Ten days seems like a lifetime right now. An unending span of tiny tasks and small sets of stairs that will feel like running marathons and climbing mountains to me. Ten more days of opening my eyes in the morning and immediately wishing I could close them again for at least another 8 hours (or maybe another day or maybe another week). Ten more days of stumbling around like a drunk woman who hasn’t had a drink in months.

But it’s just ten days.



2 thoughts on “The Home Stretch is Rough”

  1. I so admire your ability to record this terrible ordeal and only wish the best possible outcome for you. Makes me thankful for my own minor health issues. Keep up your spirit. Hope to one day meet up with a few of our Italy group, maybe in NYC. Hang tough!!

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