My experience about getting out of the house tells me to go someplace quiet. Sitting on a bench at a park (not near a bunch of loud children - or adults) or sitting in car with windows down somewhere with a good view is good for me. Going to a restaurant or shopping with noise (even if not loud) coming from every direction is not good for me.

Learn to say, "I know you want me to get out (or go somewhere with you). I can handle going or doing (...) for x amount of time." Don't push yourself AND don't let anyone else push you too far.

that sounds like good advice! thank you

I know exactly what you're referring to and I've experienced the same thing even with my own family. I've told my family SO many times all of the things that I go through on a day to day basis and yet SO often because I don't actually LOOK sick or like I feel terrible they think I'm fine and that it's all in my head. And for those that do believe me, they only seem to remember or show concern about one symptom, which for me they're all bad. ha ha.

So it is very difficult to explain to someone what you're going through and to actually get them to understand how it affects you. I've kind of gotten to the point where I try and look at myself as someone who is disabled (even though my life style doesn't reflect that). That way, I can look at what I am doing and seeing that whatever I'm able to accomplish is a BIG deal. You wouldn't expect someone who couldn't walk to run a marathon, so then why should those of us dealing with PCS be forced into a guilt trip that we aren't doing enough?

Just my thoughts and something I am trying to accept as a reality for myself. I hope it helps.

I agree with that too. One thing that helped (I'm 14 months out and JUST got this) was something I received from a Brain Injury Assoc packet. It is titled "what brain injury survivors want you to know". It lists about 20 statements or scenarios such as:

I need a lot more rest than I used to. I'm not being lazy. I get physical fatigue as well as a "brain fatigue". It is very difficult and tiring for my brain to think, process and organize. Fatigue makes it even harder to think.

AND

My stamina fluctuates, even though I may look good or "all better" on the outside. Cognition is a fragile function for a brain injury survivor. Some days are better than others. Pushing too hard usually leads to setbacks, sometimes to illness.

AND ONE MORE FROM THE LIST:

I am not being difficult if I resist social situations. Crowds, confusion and loud sounds quickly overload my brain, it doesn't filter sounds as well as it used to. Limiting my exposure is a coping strategy, not a behavioral problem.

There are several more statements set up like these. What I did was finally sit down with my partner (long term boyfriend) after I noticed he read the sheet but didn't seem to "get it". We went over every statement and I got to explain what my experiences were with each one.

That helped tremendously for him to see the struggles and how they did in fact apply to me. He is much more understanding and supportive now that he has a reference. I made copies of the sheet and will refer to it if I have a hard time articulating in the moment.

I don't think it has any copyright to it, so if people here would find it helpful, I could type it out over time and post it??

Maybe go over one or two, take a break or re visit it again and again when you have more energy, it may be too much in one sitting. It totally wore me out, but I really needed him to understand at that point.

http://karahob.blogspot.com/2010/09/pieces-of-me.html is the link to the list referred to in above post.

Excellent! I didn't know it was online. I did get the list from the MA BI Assoc.