Quote:
Originally Posted by Klaus
When you feel you are being so 'good', making all these sacrifices of everything that makes life enjoyable so that your symptoms will get better, and they aren't changing, that was the most depressing time for me as well.
As well as having the horribleness of PCS, you get this terrible feeling on top that it's all just so UNFAIR. I think there's something deep in most people's psyche that wants to see the world as an ordered place where good things come to people who do the right things, and this sort of unfairness really gets to us.
I found it helpful to consciously let go of this idea that things should be fair. I was making all those sacrifices because they were my only chance of getting better, not because they guaranteed that I would. There was nobody judging me for doing the right thing and rewarding me with improvement, it was just me, on my own, giving my body the best chance I could of recovery. It was definitely liberating to think that way.
I imagine this was easier for me as an athiest. For you perhaps looking at the story of Job or something like that, in that his sufferings were not 'fair' and he was not helped by God for some time, but ultimately it was all part of God's plan and turned out fine in the end. I'm sure it won't be the first time you've considered that story.
For me, I went through a period of inexplicably not getting better despite doing all the right things, it was as I say very depressing, and eventually I started to improve again. I would predict that the same will happen for you.
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I don't think anyone is getting what I'm saying...okay, let me explain. You know how we all have a threshold of what our brain can take? You know...15 minutes on the computer, 30 minutes watching TV, one conversation on the phone per day...etc...and we know if we cross that line there will be trouble.
My complaint is I'm getting WORSE!!...meaning my threshold is getting smaller and smaller. I was able to watch TV before and now I can't. I used to play video games and now I can't. Now, I can't write one post on here without getting wiped out for the rest of the day. Why is this happening? It's not that I'm doing everything I need to do to improve my recovery and not seeing any results, it's that I'm getting WORSE.
I slept 13 hours last night...I thought that's what I needed, just a bunch of sleep to reboot my brain...you'd think I'd wake up refreshed today, right? Nope. I woke up feeling like I was still in a dream or something. Completely....delirious, slow, dumb, broken....About an hour after I woke up, I got a phone call from a friend...I've been ignoring his calls for weeks because I've been terrible at conversations...well my social skills seem to have improved recently, so I answered. Wow. I couldn't even talk....I didn't even know how to reply to anything he was saying. My brain just feels like it's more broken than it was a month ago...or a week ago instead of staying the same or getting better.
I wonder if I should get that MRI my new neurologist requested.
bh_pcs, thank you for the kind words and suggestions. My problem is...I can't do anything...at all. I tried drawing and I became a space cadet. Anything that requires me to think wipes me out. I'm scared to try anything anymore because when I get overstimulated now, my brain shuts down COMPLETELY and puts me in this extremely uncomfortable mind-state....extremely....uncomfortable....and it will stay that way for the entire day, or sometimes 3 days.