Originally Posted by catra121

I know this wasn't addressed to me...but I would say that I am hanicapped/disabled. Not completely and totally disabled in the sense that I can't do ANYTHING...but RSD severely limits my ability to perform many life activities and things that I used to be able to do. I've learned to function despite some of these limitations but there are other things that I just simply cannot do. And on bad days there are a lot more.

But I try not to focus so much on the things that I can't do outside of working towards goals in therapy in the hopes of some day being able to. I try to take a more goal oriented approach to any of my limitations and those which I have yet to conquer are just things for me to work on. I celebrate every success that I make...even small things like being able to reach for a plate in the cabinet or wearing a shirt that I couldn't before...and I continue to hope that with hard work and time that I will conquer all the other things. If I can't...then I can't...but I won't stop trying.

One thing that I can tell you...which may or may not be helpful to you...is that I have been very lucky in having the support of people in my life who don't treat me like I am broken. They are supportive and incredibly helpful...but they just treat me "normal" and I think that has been a huge positive in my life. They help me with things that they know are outside of my ability, and ask all the time if there are other things that they can do to help me out and let me know that they are always there if I need anything, but my RSD is never the focus of any conversation or get together. That sense of normalcy has been so important to me. They have never doubted the severity of what I am going through or that it is real...but I choose not to dwell on it and make RSD the center of my existence. Not easy considering this monster is always with me and I am always in intense pain all the time...but that sense of normal with family and friends is an important part of my fight against RSD and helps to remind me what I am fighting for.

That doesn't mean that you don't focus on your health and on getting the treatments you need...my life seems to revolve sometimes around the therapies and things I do to help take the edge off the pain and dealing with flares and all that. But as much as possible...try to hang on to anything that makes you feel like your old self (at least on some level). Try to laugh and smile...enjoy what things you can. It is hard...I know...but it is well worth the effort in my opinion. I know things would be very different for me if I didn't have these supportive and loving relationships with the people around me.

So even if your friends and family don't seem like they really "get it"...try to maintain those relationships the best you can. No one needs people what are negative or poison in their lives (you should cut anyone like that out immediately) but as for the rest they cannot help that they do not understand the full extent of your pain. Even within your physical limits you should try to do what you can to spend time with the people in your life that you care about...and time not talking about RSD and the pain. Believe me...time with family and friends can be a welcome distractions from the pain and can also help you cope with it.

I'm glad you have a good OT...that will be a huge help in the long term with maintaining and getting back the function. Keep at it and keep fighting for the treatments you need to get relief from this monster. This includes whatever you need to keep yourself sane though all the trials that we encounter in our fight against RSD. There are things that the doctors can do to help us and then there are the things we can do to help ourselves...and both are SO important. I wish you the best and please remember that we are all here for you.