yevlax

Classic


I have settled into a routine throughout the week. My body cooperates. Most of the time.

The past year has made a lot of differences in when I'm tired, how and when I sleep, and when my brain and body are more and least active.

When I first wake up in the morning (which can be anywhere from 7 am to 11 o' clock), I have a short burst of energy, but I'm not yet mentally awake. Often my sleep is disrupted from the changing schedule needs of my transfusions at the Cancer Center, so Tuesdays and Wednesdays I'm groggy for most of the day. As long as I've got my TARC 3 rides set-up the day previous, I can usually fake it through the day through a sheer memorization of routine. Sometimes in the middle of getting my unit of blood on Weds, I'll 'snap awake' for a short period of time as the fill-up makes me feel better. It is during these time I can remember my social cues and the nurses find delight in my little quips or non-sequitors that I can pull off.

When I come home on both Tuesday and Wednesday, I either collapse into a mid-afternoon nap or spend the rest of the night in a daze, feeling useless. Although it is still far better then the dialysis I was on three times a week at age seventeen. That left me in an almost permanent daze at the time. I've been tired for most of my life.

Thursday I am at my best. The blood I received the previous Friday has had time to 'settle' into my body, and assuming I've had enough sleep I can function for most of the day. My blood is hovering around an '8' right now, but drops rapidly to the low '7's' as the week progresses. Tuesday is my Sunday. Wednesday is my Monday. I reboot once a week.

Thursday, Friday, and sometimes Saturdays are the days I have the most energy during the day. I still have to be very careful with my movements. A slow walk to the car will not usually wear me out, but sometimes if I'm carrying too much weight- a bag of groceries for example- the fatigue is accelerated. I feel ridiculous not being able to carry a bag of groceries from the parking lot to the kitchen inside, wheezing and needing to lay down towards the end. I have to take a nap after every bath (I can no longer handle showers, too much standing up is required). I have take an even longer nap after every trip to visit Suzie Palm and her five sisters. The end of the regular weeks are spend shifting from my bed to my makeshift desk with my computers atop. I fiddle with various artsy projects (which I do a little), or browsing various humor sites and odd forums (which I do a lot).

Sunday is the end of my week, my Saturday. The drop in my energy level is definitely noticeable by this point, but this is my favorite day of the whole week. In the short time we've lived here, I've seen friends come over for company and games. I get emotionally recharged on Sunday, it's a large part of why my ramblings have went from a very dark and paranoid place to random nonsense...or sometimes, if I've had a particularly good Sunday, even a small smile or two.

Monday and Tuesday are the days I am feeling the worst physically, to the point where it is affecting my mind again. my thoughts get sluggish. I can't quickly response to anything, and I've already forgotten to set up my TARC ride once. I do not take baths or visit Ms. Palms on Monday or Tuesday if I can help it, the stress is nearly enough to knock me out at this point. I'm usually popping more Propanolol than usual these nights, to ensure restful sleep. Tuesday morning I go on autopilot again, get my labs drawn, then zombie-walk back home and try to keep it together until my refill the next day.

Late at night near the end of the normal week, like this eve, are the times my thoughts are the clearest. I can remember being able to think much faster and more fluidly than this, so although far from 'normal', its the best I'm going to get at the time. I'm starting to feel like the main character of Flowers for Algernon- near the end when his intelligence vanished and he could only remember 'being smart' and losing his conception of what it was like as the time passed to the end. Things like this, not any of my physical disadvantages, are what cause me the most stress.

I'm numb to the point of amusement at how horrified people get by the physical horrors of what I'm going through right now. I'm preparing to get into a heated discussion next week with the nurse that oversees the bone marrow biopsy, because I do not want the doctor to stop for any reason, especially if its because 'I'm in pain' (I want answers, which will comfort me far more than protection from a few minutes of drilling). I've even somewhat adjusted to the fatigue limits. The fatigue goes away after a 20-minute nap, the twinge of humiliation caused by feeling so useless sticks around for much longer.

I heard a sermon when I was much younger, making the analogy that your body is just a vehicle, it is merely used to drive your soul (mind) around. I liked that analogy, and remembered it. I really do think of my body that way, and all of the things that have been done to it are just maintenance work. My mind used to be wonderful before the blood loss. My car has always been a piece of shit.

I can see the conversations at the auto shop now.

"Hey Joey...dear GOD, how many times have you wrecked this thing?" the mechanic exclaims, right before he asks me again why I continue to pump so much money, time, and effort into this losing ride.

"I've already invested way too much into it," I tell him. "After a certain point I can't justify letting it go to the scrapyard. As long as the frame's still there, I'm fixing it up."

The mechanic just shakes his head at me. He still can't believe I'm trying to save this heap of junk.

"It's a classic, man," I reply.

"A classic."