My friends think I need to start doing more -- get out more
 

They see how I just crash...but yet think that its more anxiety and I should "work thru the headaches"

How do I handle this? I know its mostly my brain and partly anxiety but how do I really get the message thru. I ask for their help, and talk and cry constantly to them. I'm just not sure what is right anymore.

You have to do what is best for you. What your friends want you to do doesn't really matter when you know it will not be good for you... They should want the best for you too.

They are just trying to be helpful. They can't possibly understand it. I have been low key about this with my friends. They will simply get confused and try to help in ways that aren't helpful if I involve them too much in my fretting about it all.

The best thing is to tell them exactly what would be helpful if there is something they can do for you. Otherwise, let the conversation go for the most part.

It's one of those things that just downright sucks but you have to keep moving on and not focus on it. SEems the more focus it gets, the worse it gets. Just let it go for a few days if you can and find something else to focus on that doesn't make you feel like complete you know what.

My daughter is coming home from college on Sat night..thank god. Someone to be here with me....been alone all day long for 8 months while boys are in school - and I really miss her. Not sure if the extra stimulation will be good, but hoping it works for me in the anxiety department

I found things got much better for me once I stopped masking my symptoms around my friends. I told them everything from how I felt in public places to what makes my symptoms get worse. They have become much more supportive and understanding than I imagined.

I sent them many links about PCS (even neurotalk) so they could understand what I'm going through. I guess it depends what type of relationship you have with these people.

One barrier with a friend was that she didn't understand the sitting in a quiet room alone for recovery. She always thought I needed to get out and be in the sunshine and with my friends. I found it very irritating but soon realized some people just don't understand certain things until they've experienced it themselves.

In some ways, PCS has helped me realize who my real friends are :D

I tried really hard to explain to my friends and relatives and only some understood what I am going through. One of my friend even told she says it is not worth living like this and she wouldn't live the way I live. One guy told me to "Man Up" and do things and face it. He told if I faint let be it. They think if they come and see me and talk I get better. I let them to do all that before which totally over stimulated and suffered to a great extent.

Now I tell them NO for everything because sadly any social activity they suggest involves lot of stimulation. Well I lost lot of friends. They think it is depression. Yes I am depressed because I cannot do what normal do and not the other way around. Nothing much can be done. Unless they go through they wouldn't understand completely. I have a cousin in NewYork who is a Psychologist and yes she can understand but she agrees it is tough. My another uncle in California who is an MD thinks it is all depression and wants me to try Electro Convulsive Therapy. I can't believe it.:mad2:

ONe friend who went thru a time of anxiety swears almost all of it is anxiety.

I do agree..yes its anxiety and depression....but its because I can't do the things in my life that I want to -- can't get out of the house for an hour without a headache.

I know my anxiety is high and is contributing to my symptoms...but that's me. ANd I do take meds for it.

I have one friend who UNDERSTANDS completely and for the most part my husband does...although he is very frustrated that he can't help me...other than doing everything with and for the kids.. We're really at a loss and I want to get better.

I am having one of those days where it seems everyone I talk to about what is happening to me lately smiles a "knowing" look at me: like "oh she's making such a big deal, this is really (fill in the blank -depression, anxiety, trying to get attention, laziness, etc etc)".

Of course I come here and see the above posts on how others experience their own versions of being misunderstood and start to feel ok again!

It's a hard part of the recovery process for sure and I've lost friends and have trouble maintaining friendships because after a while of talking to a person I am exhausted and my brain starts to buzz. I'm ok in that moment and even notice I start getting more chatty, as if the adrenaline is picking up to survive the conversation. As soon as I get to a more quiet place, it all decends from there.

You definitely don't need to get out and start doing more. They are trying to be supportive but they have no idea what's best for you. PCS is not something you can push through.

Most of my friends don't get it. I've learned people can only understand PCS to a certain extent unless they've gone through it. I've lost a ton of friends through this. Few of them were there for me. I'm giving them the benefit of the doubt that they have no idea what I was going through.

I don't like talking to friends about symptoms because I feel like I'm complaining, I don't want to be a burden, and they simply don't get it.. But that's why I come to this forum. :)

that's all i talk to my friends about..they call and ask what did i do and how do i feel.

i'm miserable.

my daughter is coming home from college tonight late -- and i know she wants to get me out of the house a bit..an hour a day she said. I think just the commotion of her being home will be a lot for me.

I don't even watch tv, listen to radio, read, etc...I only stop on the computer here for a few mins a few times a day.

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.