I understand you! I think that you’ll find most of us on hear can feel your frustration. We might look OK and not have visible wounds so people can’t comprehend why we can’t take their simple, loving advice. Puts a lot of real meaning in “If you haven’t walked in a person’s shoes….” I think that’s why a lot of us looked four and found Mayo Connect. It’s frustrating and exhausting to constantly fuss with others about our limitations and they think we’re just defensive and in turn get frustrated with us. It’s the only place I have virtually found people who understand. We all understand and usually can learn how to live with this more than our doctors can help us.

I hope you take physical therapy. They’re the ones who can expertly help us use and strengthen our legs and arms without hurting ourselves and help get the most out of our days. Let them know some of the challenges and external pressure you get from others and suggestions on how to handle it. The bottom line for me, after 8 years of this, is my goal is to get the most out of every day. I am not trying to hurt myself in ways that will set me back days or weeks. I’ve learned my body and energy limits and try to balance them daily. Yes, people do frustrate me with their insistence that I could do things if I wanted to. It’s put distance in some of my friendships because I can’t run, jump, shop, and play with them. So I’ve learned to encouraged to live! I tell them to not let me hold them back, and I’ve had to find new hobbies and interests within my limitations. I sure hope you consider physical therapy or counseling to help you get through this frustration.

In the meantime and always, we have a great support group here that understands, and I’m pulling for you!