Expectations from caretakers
 

I get that my condition is wearing on my family. No one asks and I do not discuss my symptoms or my progress. I do not expect anyone to get it.

However, I am already having difficulty controlling my frustration from the lack of socialization or exercise or fun things in general. Ignorant comments about PCS really **** me off, especially given that these comments are driven from their insecurity. Ie) the fatigue that I am experiencing is because I do not exercise enough.

I am grateful that I get food and shelter and get rides to doc's appointments and I have REALLY lowered my expectations, but if I am to do the water off the ducks' back thing with these comments, I need a mind set. How do you prepare yourself for the ignorance, disinterest, etc. Advice please.

I think it starts with accepting ones own condition. If one is anxious about one's condition, I doubt there is much chance at enduring others negative comments. One needs to be secure in oneself first. Being educated about ones symptoms and how to moderate them helps.

If there is any chance at getting the others to watch the YouTube "You Look Great" video series, it should help them. http://www.youtube.com/watch?v=x9Xso...ature=youtu.be

One more resource
 

I had no luck getting my kids to watch the You Look Great series on youtube, but I watched it and it was amazing.

However, I did get them to read this article and I put it on the fridge and I could tell it got through to them. It is a concise summarization of many things I had going on at the time.

Good luck and keep on healing

poetrymom

http://www.brainline.org/content/201...u-to-know.html

I stopped talking to everyone who made me feel bad. know you cant do that because you live with them. '

now I bother certain people on this board with my problems until they get sick of me lol.

my best advice is to talk with us about the things that bother you. at least we understand.

thanks guys. venting on this board does help. what Mark In Idaho said rings true. I have to be secure in myself to let the negative comments slide off my back.

yeah getting my family members to watch the video is not gonna fly given that they do not even listen to me when I tell them my symptoms and how I am sensitive to noise so will you be mindful!!!

Thank you for that website, its almost perfectly written out for mine, and im sure most of yours issues. Hanging it on the fridge, and will give it to some family members I see all the time.