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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 10-26-2013, 06:21 AM   #1
    snowman2
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    Family and caregivers

    Hi I be been dealing with RSD/CRPS for over 2 years now and it's been a tuff road dealing with this illness and finding a way to live with it . I suffer everyday from this and MyFAMILY as well mostly my spouse we've gone through alot of stages from grieving , all the loss from material things , me not being able to work anymore that's a big one as I was the provider in the family , to being able to simply enjoy an outing with my spouse or family as if I do to much the pain goes through the roof . But my wife tries to help me when I'm having a flareup but there's nothing that helps but time and recently when I had a flareup I noticed the helplessness in her face and thought I'm pushing her away by not excepting whatever she offers and making her feel like she is helping , usually I just want to be left alone and I don't like to let her see me suffering but I know she sees it on my face , alot of times I can't even talk . So I've been thinking this is messed up and need to learn to let people around me help any thoughts on this? Snowman2

     
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    Old 10-26-2013, 10:11 AM   #2
    JohnathanM
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    Quote:
    Originally Posted by snowman2 View Post
    Hi I be been dealing with RSD/CRPS for over 2 years now and it's been a tuff road dealing with this illness and finding a way to live with it . I suffer everyday from this and MyFAMILY as well mostly my spouse we've gone through alot of stages from grieving , all the loss from material things , me not being able to work anymore that's a big one as I was the provider in the family , to being able to simply enjoy an outing with my spouse or family as if I do to much the pain goes through the roof . But my wife tries to help me when I'm having a flareup but there's nothing that helps but time and recently when I had a flareup I noticed the helplessness in her face and thought I'm pushing her away by not excepting whatever she offers and making her feel like she is helping , usually I just want to be left alone and I don't like to let her see me suffering but I know she sees it on my face , alot of times I can't even talk . So I've been thinking this is messed up and need to learn to let people around me help any thoughts on this? Snowman2
    Snowman2 I know exactly how u feel. The best advice I can give is let your wife & family help you. Even though what they're doing May not really be helpful for your pain, remember you are all going through this. It's as hard on them as it is you.

     
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    Old 10-26-2013, 02:54 PM   #3
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    Re: Family and caregivers

    Snowman,I don't know if you realize it or not, but you have come so far since we started talking on here. I'm proud of you that you are recognizing your wife's need in wanting to be there for you! Just by letting her be near you during the flareup, expressing how you are feeling (even though she already knows), but just opening up and letting her know that you are glad that she is there for you when you need her most. When you were able to work, didn't it make you feel good if she showed you that she appreciated all you do for your family? It goes the same way for her. Nobody, especially women, want to feel "shut out" from our mates! When my husband hurts, I hurt. What hurts more though, is when I would want to try to be there for him and instead he shut me out, not wanting me to deal with what he was feeling. We had a long talk about it one time and he didn't realize how much that had bothered me. He didn't realize that I felt like he didn't trust me with his feelings by allowing me to be there for him and it was beginning to put a wedge between us. She knows that she cant fix this for you. She knows that she cant take the pain away. She knows that if she tries to just put her arms around you that it causes you great pain. What she does want though, is to know that YOU want her to be there and that you really do appreciate her being there. They suffer with us. You two have been together for a long time, don't allow RSD to put a wedge between you. You have RSD but it doesn't mean it should have you.

     
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    Old 10-28-2013, 03:48 AM   #4
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    Re: Family and caregivers

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    Originally Posted by JohnathanM View Post
    Snowman2 I know exactly how u feel. The best advice I can give is let your wife & family help you. Even though what they're doing May not really be helpful for your pain, remember you are all going through this. It's as hard on them as it is you.
    Jonathan thank you for your support its been awhile and I hope all is well with you as we'll snowman2

     
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    Old 10-28-2013, 04:03 AM   #5
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    Re: Family and caregivers

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    Originally Posted by jewlz67 View Post
    Snowman,I don't know if you realize it or not, but you have come so far since we started talking on here. I'm proud of you that you are recognizing your wife's need in wanting to be there for you! Just by letting her be near you during the flareup, expressing how you are feeling (even though she already knows), but just opening up and letting her know that you are glad that she is there for you when you need her most. When you were able to work, didn't it make you feel good if she showed you that she appreciated all you do for your family? It goes the same way for her. Nobody, especially women, want to feel "shut out" from our mates! When my husband hurts, I hurt. What hurts more though, is when I would want to try to be there for him and instead he shut me out, not wanting me to deal with what he was feeling. We had a long talk about it one time and he didn't realize how much that had bothered me. He didn't realize that I felt like he didn't trust me with his feelings by allowing me to be there for him and it was beginning to put a wedge between us. She knows that she cant fix this for you. She knows that she cant take the pain away. She knows that if she tries to just put her arms around you that it causes you great pain. What she does want though, is to know that YOU want her to be there and that you really do appreciate her being there. They suffer with us. You two have been together for a long time, don't allow RSD to put a wedge between you. You have RSD but it doesn't mean it should have you.
    Wow you always give such great feedback jewlz67 that's it in a nut shell RSD has caused a wedge and I don't want RSD to take our relationship as well so I'm focusing on so many things now that the shock is over I've realized that there's nothing I can do but learn how to live with this illness and achieve coping skills and learn to understand that she is suffering with this illness as well . As they say try putting yourself in the other ones shoes and try to understand how you would feel if it was the other way around and she had RSD and was suffering all the time I would want to feel like I was able to help so I need to open up and get of my island that I'm on and know where in this together snowman2

     
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    Old 11-06-2013, 05:06 PM   #6
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    Re: Family and caregivers

    Hey Snowman, I'm like you when it gets bad I won't to be alone. I've found it helps me to be with my family and try to push thru the pain to enjoy their company. It can be painful sometimes but then when I say goodbye to them, I feel so much better spending that time with them and pushing the pain aside. I've found that one those real bad days pull your family up close because it will make it less painful.

     
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    Old 11-07-2013, 11:26 AM   #7
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    Re: Family and caregivers

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    Hey Snowman, I'm like you when it gets bad I won't to be alone. I've found it helps me to be with my family and try to push thru the pain to enjoy their company. It can be painful sometimes but then when I say goodbye to them, I feel so much better spending that time with them and pushing the pain aside. I've found that one those real bad days pull your family up close because it will make it less painful.
    Hi yes I really try to enjoy as much as possible but when it's really bad I can't even talk so I try to do things in the morning and its a struggle as everyone around me are night people so I do miss alot but it is what it is I guess I hope that when I get the SCS put in that ill feel better

     
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