Monday was pain doc day for me and it went relatively well. I was in a lot of pain and I was disoriented by the noise which was pretty severe. This was all within the margin of error of being par for the course. Ah, there's nothing quite so tasty as a well mixed metaphor. When I made it home with my reward for behaving at the doctor's office, I crashed and slept more or less the rest of the day. I got up briefly to skim through my email and I discovered that the remaining Chiari organizations had accepted me into their ranks. I went back to sleep and only got back up to see what Melissa was doing with her day off.
The problem was that I couldn't get close enough to ask. The TV was so loud that it scrambled my brain. I couldn't clear my head enough to ask her to turn it down or off. Skipping ahead to the present, I've learned since that Melissa had the volume set at a pretty standard level so she wasn't torturing me with a loud TV when she knew I was hurting. Back in the moment, I presumed this was a case of her turning up the volume uncomfortably high to deal with the consequences of her childhood spent attending bad concerts without ear protection. Yes, Melissa has lost much of her capacity to hear and I've lost most of my ability to deal with loud noises. Jack Sprat and all. I knew this before I married her and I love her for who she is.
I retreated upstairs where I was too sick and tired to work on fiction or play computer games. That's ouch to the ouch degree. Instead, I retreated to the bedroom and closed the door where the TV remained too loud for comfort until I covered my head with blankets. It was bad but I did fall asleep for close to 12 hours. I woke and the TV was much quieter which made no sense because I could tell it was one of Melissa's favorite shows. She wouldn't turn down a favorite show without good reason like me asking her to do so. My best guess was that I had been suffering from my least understood symptom: sensory overload.
What is sensory overload? I don't have a nice, neat medical explanation for this one because it just seems to happen and I'm at my least capable of making good observations while it's happening. All I can do is describe it in anecdotal terms. Noises seem louder, light seems brighter, touch that would normally reassure feels frightening and the space in my head into which I can pull back to make observations and rational decisions is filled with noisy fog. In all honesty, I'm tired now and this symptom is threatening. My only defense against this is a metaphorical bunker.
The reality of the metaphorical bunker does make some sense. I need solitude with significant physical space between me and people who aren't Melissa. Sometimes, I need Melissa to keep her distance but it helps to keep her close other times. I need darkness or dim lighting whenever possible but just putting on my sunglasses can be a big help. Quiet helps as well but quiet is not silence. Organized noise is better than silence especially if the organized noise is Pearl Jam music. Getting under a blanket is a big benefit even when the weather is too warm.
Apparently, it's too soon after the pain doc appointment and I need another break.
Since my Monday pain doc appointment, my symptoms have resolved and simplified to exhaustion. I get very short periods of productivity and long hours of involuntary sleep. Melissa and I were watching TV last night and we were watching my shows no less. This was after five or six hours of napping during the day. The pain in the back of my head became so intense that I could not stand to be awake at first. Shortly after deciding this, the guests on my shows or the actual shows kept changing in the blink of an eye. I was doing the blinking and they were awfully slow blinks. Thankfully, the shows repeated and I was able to catch what I missed the second time through.
That's the "happy ending," of course. Earlier today, I tried to implode and fall apart. One reason why so many of us manage to keep fighting to stay alive that one more day or so is that no one is out there accepting surrenders. I might say something about giving up and just going insane but I can't find the signup sheet to have my surrender accepted. There's no bin anywhere to turn in my sanity. Thus, I look for ways to keep holding on and I try to avoid making moral issues out of them. Today, I wanted to "drink until everything was funny" as I put it. If I were to put moral labels on such thoughts, I would consider myself pathetic for wanting to give in and do anything for some pain control.
Melissa did go out on her day off and bought me some beer that is on the cheap side of the range of beers I enjoy. By the time she acquired the beer, I had gotten some sleep and so I was no longer quite so emotionally desperate. I drank two bottles of beer which is far from a binge by any definition that I know. The result was the easing of the pain that sleep hadn't helped so that I could sleep more. This is an example of my next major front in symptom management. I need to trust myself more, stop accepting the logic I learned as a child that said any indulgence was wrong even if just a little wrong. So long as I am not hurting anyone, I should be able to drink a couple bottles of beer without guilt. It helps me with the pain and I need help with the pain. Even my doctors approve of the small amounts that I consume.
The Chiarian motto that I was taught was, "Be gentle with yourself." I need to stop trying to be the ideal of someone else and be gentle with myself.
No comments:
Post a Comment