Quote:
Originally Posted by Mark in Idaho
Nick,
First, you need to put your mother's comment in context. Since she is not home much, she only sees your symptoms when she is. Your talk with her and the others may have made her think you has gone downhill just because now she knows more of your complaints.
You should ask her what she observes in you that makes her think that.
Do you text with her during the day?
|
Well, I think she gets the idea that I'm getting worse because...well, I actually did. Let me refresh you on a couple things...I was actually fully functional about a month and a week out from my injury. I started working, hanging out, running errands...you know, regular life. Then in September, PCS showed up at my front door with in a vengeance. That would be one reason she would think I'm getting worse.
In October when I moved back in with her, I was able to watch TV, play video games, stay on the computer all day...then as of November, I can't do any of that without serious problems. I was also able to go to stores without becoming overwhelmed and confused...not anymore.
Yesterday I explained to her that PCS sometimes don't show up for months, that's why I appeared to get worse. I have no explanation of why I can't seem to watch TV or play video games anymore.
Your right, she's not home enough to see what's going on with me. She knows of my struggles though...when I start not feeling right I text her about it, or tell her when she gets home. She knows how many times I've been to the ER, she's taken me half the times. I think I've been to the ER more in the last 4 months than I did the first 3 months of recovery.
Yesterday I broke it down for her some of the things that bother me, such as the chaos in the house, arguments and stress, bright lights, TV, dogs barking, long conversations, etc. This is the first time I've told her these things bother me...that could be another reason she thought I was getting worse because she didn't know about those things to begin with.
I have not told her of my most recent improvements yet.
Quote:
Originally Posted by Mark in Idaho
To all,
These comments from others are based on they total lack of understanding your condition. How do you expect them to understand your condition?
The only way they will is if you can find a way to explain it that they will understand. Everybody needs to find the explanation that works for their condition.
When I comment about my limits with driving, I have a simple explanation. I say, "I have very poor visual memory. If I am stopped at a stop sign and the crossing traffic does no to have to stop, first, i will look to the left to see where the oncoming cars are. Then, I will look to the right to see where those oncoming cars are. But, by then, I have already forgotten what I saw coming from the left. "
I have other such explanations but that is the one I use the most.
I also explain my inability to follow multi-step instructions from memory.
And how, I can be completely focused and functioning then have a sudden sound completely wipe my memory clear, as if my memory was a chalk board and the sound was an eraser.
We can find explanations that other will understand.
If any of you have symptoms you need help explaining, post them and I'll try to help you come up with an explanation.
Remember, we are the invisible wounded. If we were using crutches or a wheel chair, others would understand.
My best to you.
|
Your right about the explanations thing. I've found ways to explain some of my symptoms...and some of them are self-explanatory (such as stuttering, word finding, etc.)...but I have some very complex things happen to me that I can't even explain to myself. So for those things I just say "i'm having problems right now". Or if I figure out what it is that causes me to feel like that I just say "If I do that it will cause me problems.".
I said in another thread I wished I looked like crap so people would know how I felt. Maybe I should draw #'s on my face (like they do in cartoons) and wrap a bandage around my head.