My daughter is having a hard time trying to under why I have changed since I got this crazy disorder....she just had our first grandson and she lives almost 2 hours away.....She thinks I have abandoned her. As we all know how unpredictable rsd can be.

I am absolutely crazy about the baby, but she thinks I should be able to do the same things I used but I am not able to....and now some days are just completely limited....I miss her and the baby, but rsd gets in the way. I have joined our local wellness center and am trying really hard to try to get in shape and help with my mobility.

Please help me by telling your stories. so she can understand thanks so much.....love you all

I am sorry about things with your daughter. I can relate in many ways to family not understanding. I have a few thoughts.
Can you sit her down and say what you stated here? That you feel she thinks you should be able to do what you used to and that some days you just are unable? Some times I think we need to say XYZ in exact words of what we can and can not do. Also how we feel. Also the family members need to say how they feel because this does impact them. So maybe you can ask your daughter how she feels about everything that is going on with you? Talking about it is better then keeping things inside.
Maybe you can plan a low key time like a brunch at your house?
I think it is great you joined a wellness center. With this condition there is only so much you can do. It sounds like you are being pro active in getting to a better place. You should be proud of yourself.

I agree with Daniella and would like to add she could research this herself and see the extremes that people deal with while battling this monster. It is hard to see something if it is not broken you know? the other thing is maybe once you chat with her, you could both discuss what you can do within you limitations to be the most active, involved grandparent you can be when you are together in person. When you are not, do you have web cams on your computers (or whatever they are called) so you can see your grandchild everyday, so you are there for the baby and your daughter, just not physically (as the distance would cause a gap also) just a thought!! once your daughter understands, with two minds, you can be very creative!! good luck to both of you!

I think it is almost impossible for anyone to understand the pain and limitations we go through on a daily basis. I know even I struggle with it. One day I can do a task the next day I am unable too. One of my biggest struggles have been learning and accepting my limitations I now have.

I know I found myself saying why can't I just do this or that and felt deflated when I was unable to do the thing I wanted. May it be taking my daughter to the park or even going for a small walk around the block. It felt like I was not able to do anything at all and why bother trying anything else.... but I am learning that yes, I may not be able to do what I wanted that day...but it does not mean I can't do anything at all. Instead of going to the park maybe I can manage to set up an obstacle course in my living room for my daughter and I can watch and cheer her on... or instead of that walk I so wanted...maybe I can sit on my front porch and still get the fresh air I wanted and enjoy the nice weather.

I guess my point is that your daughter needs to understand that maybe you can not do the things you use too...but instead to appreciate the things you can do. Depending on how old the grand baby is... maybe you can read a stories over the phone to them when you are unable to visit? Or now a days even skype to them. Just let her know you are doing the most you can do with the limitations that are there for you and those good days that you are able to do more... you will.

We may not have the life we want...but that does not mean we still cant have a good quality of life for ourselves! Don't let your limitations make you think you are not holding up your end of being a good grandparent...as I am sure you are a wonderful one.... just when we are faced with limitations we are we just have to be a bit more "creative" to achieve some of the things we would like to do.

Take care,
Karen

(just noticed I repeated a lot of what Sonny had said...sorry didn't read the reply's... Guess great minds think a like Sonny )

[QUOTE=cndangel;774428]I think it is almost impossible for anyone to understand the pain and limitations we go through on a daily basis. I know even I struggle with it. One day I can do a task the next day I am unable too. One of my biggest struggles have been learning and accepting my limitations I now have.

I know I found myself saying why can't I just do this or that and felt deflated when I was unable to do the thing I wanted. May it be taking my daughter to the park or even going for a small walk around the block. It felt like I was not able to do anything at all and why bother trying anything else.... but I am learning that yes, I may not be able to do what I wanted that day...but it does not mean I can't do anything at all. Instead of going to the park maybe I can manage to set up an obstacle course in my living room for my daughter and I can watch and cheer her on... or instead of that walk I so wanted...maybe I can sit on my front porch and still get the fresh air I wanted and enjoy the
nice weather.

I guess my point is that your daughter needs to understand that maybe you can not do the things you use too...but instead to appreciate the things you
can do. Depending on how old the grand baby is... maybe you can read a
stories over the phone to them when you are unable to visit? Or now a days
even skype to them. Just let her know you are doing the most you can do with the limitations that are there for you and those good days that you are
able to do more... you will.

We may not have the life we want...but that does not mean we still cant have a good quality of life for ourselves! Don't let your limitations make you
think you are not holding up your end of being a good grandparent...as I am
sure you are a wonderful one.... just when we are faced with limitations we
are we just have to be a bit more "creative" to achieve some of the things we
would like to do.

Take care,

Wanna hear something funny?...Oh btw... Your bestest buddy card I sent you...well, just so you know..I got that and sent it bf I got myself in the dog house...timing just worked out that way...good think huh?

Karen

[Quote]

Dear Cindi,
I had a real pretty reply going out to you this morning... My suggestion was also using the skippe on the computer.... And never worry as this is such a double edged sword with our loved ones...as they have trouble admitting to our illness cuz their hearts won't let them... We have to hold in there together
and share small doses, often of our world with them... None of this is nice for us or them.... You are in my prayers....

Hugz, Kathy

I know exactly what you mean...the limitations are SO frustrating and it is hard to explain to people what you are going through...especially because to a lot of people many of us "look fine." When I first got the diagnosis of CRPS...it was so frustrating going through the process of relearning to walk at age 26. I mean...seriously...I have been walking since I was a year old and now I had to retrain my body how to do it. And then there are the things like going up and down stairs...can do it...but it's painful and it's SLOW. I hate having to explain to customers at work every time I go into the stockroom that it's going to take me a little while to get something because I have trouble with stairs. I don't want them to think it's an excuse...but I also don't want people to think I forgot about them because it takes a little while. And then there's the stupid stuff like holding open a door with my foot or pushing a drawer shut with my foot...never gonna happen and I feel like an idiot every time I want to do those things that come so naturally to me. And then there's the simple matter of having to ask for help to do things that I used to be able to do perfectly will on my own before like lift something heavy or move a fixture/furniture. I used to be SO independant before and now I always have to ask for help.

Of course now I REALLY have to ask for help because now I can't even walk at all...but I can crawl. I spent a couple of months just on the couch...and that got old REALLY fast. So now I have a relay of rolling chairs set up on the wood/tile floors is different rooms. I have to crawl everywhere else if I want to get around...talk about frustrating. I love to cross stitch...but it hurts to move my arms or to lean back against the couch like I used to. So I had to figure out a new way to do it where I sit in the kitchen at the table, prop the stitching frame up on the table and my elbow on the arm of the chair so that I don't move as much. Took a while to figure it out...but I got it down now. And I can't concentrate enough to read books anymore...takes forever to just read a couple of pages when I used to be able to read 500 pages an hour. But now I listen to audio books.

It's just awful how this condition robs us of our sense of "normal." It takes a lot of effort and hard work to get back a fraction of what we used to have and even then...some days it's not even possible to have that much. Maybe if you can explain some of those things to your daughter she can understand some of your daily frustration and understand that you are doing the best that you can. There's a quote I have always liked...which I am probably going to butcher...but I think it goes something like: Just because someone doesn't give you what you want, doesn't mean they don't give all they have...or something like that. I think that may be the way your daughter will have to think about your relationship now. Of course you WANT to do more...but you can't. Doesn't mean you don't give her and the baby everything you have to give.

Hi Cindi1965,
My heart goes out to you and all the others as we deal with our own physical and emotional pain with rsd but while we are dealing with it all we have to deal with others and it can be sometimes real difficult to explain to them. I just spent some time looking on a website called www.rsdhope.org and they have some wonderful articles there that you may be able to email to your daughter to help her deal with your rsd. I found the one I was looking for and here is the site for you to review it. It is: http://www.rsdhope.org/Showpage.asp?...1&PGCT_ID=2916 The article is called HOW DO YOU EXPLAIN WHAT IT IS LIKE TO LIVE WITH CHRONIC PAIN? and talks about "The Spoon Theory." I am sure you will like it because it explains how chronic pain works in concrete terms. Look on that site for other articles that may help you and her deal with rsd together. It takes lots of time, love, and patience. She is probably at the angry stage (My son went through this part for a long time but he was a teen when this happened to me). Hope it helps. Best of luck and hang in there.
kathy d