Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


advertisement
Reply
 
Thread Tools Display Modes
Old 06-09-2011, 06:42 PM #1
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
Default

I am so glad that your husband was able to have a good day!! As you can probably see it is the pain that makes him the way he was acting, it does terrible things to them and sometimes they don't know how to channel all of that. It took my husband about 2 years, and even now on his really bad days, I know to just keep quiet,( well as quiet as we can, the kids are pretty good too, they seem to really understand, even at 4 and 6,)and give him space. As far as how my hubby is doing, I try not to think about it, but here we go. He has the CRPS on his entire right side, including internal, and he now has increased pain on the left side, so it will be full-body soon. The spread from his right hand to right leg took about 8 months, and he has been having pain in the left side for about 3 months now. He was fighting to keep his right wrist straight, even though he told me every day how hard it was, but on June 1 it bent and he can't straighten anymore. He has been walking with a cane for 3 months now. The way I know his level of pain is that he has not gone fishing in over 3 weeks. My hubby LOVES to fish, he would fish everyday last year, this season he has gone about 10 times. It makes me very sad, but I just keep hoping that something will click and he can be pain free.
I agree with ballerina, although I thought you meant a pain pump. No matter what any doctor says, do the research yourself. You are the best ally your husband has.
RSDjaded is offline   Reply With QuoteReply With Quote
Old 06-09-2011, 06:54 PM #2
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
AintSoBad AintSoBad is offline
In Remembrance
 
Join Date: Mar 2009
Location: Eastern PA.
Posts: 1,143
15 yr Member
Default

I'm so very sorry, that I've just picked up on this thread, and not sure I saw the original writer stop back in... (My fault).

But, the last thing any of us RSD's want (especially a husband) is pity. We need happiness to surround us, and don't let our pain to stop you!

Forget feeling sorry! Forget it!
You're feeling sorry for yourself! Not for him!
(Sorry for being so bold, but, truth is the only way to be).

So, pick up, and get on with YOUR life!
Did you depend on Him too much?
Maybe.

Get up, Get on, be Happy!

That's all I can tell ya!

I'm the husband with RSD.

Pete

ASB
AintSoBad is offline   Reply With QuoteReply With Quote
Old 06-10-2011, 10:09 AM #3
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
Default

I am very offended by your post, I do feel sorry that my husband has to deal with this pain everyday. It is horrible that he is stuck in bed all day and can not go out and fish like he loves, or even do any of the things he enjoyed. I don't give him pity, I support him as much as I possibly can and I try to make his day as happy as I can. Just because I feel sorry for him does not make me act any different towards him. I do EVERYTHING in the household, outside work, take care of a 4 and 6 year old, go to school full-time, and take care of him. I don't feel sorry for myself, I don't have time to!
RSDjaded is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
nevadabound (06-10-2011)
Old 06-10-2011, 10:45 AM #4
nevadabound's Avatar
nevadabound nevadabound is offline
Junior Member
 
Join Date: Jan 2011
Posts: 57
10 yr Member
nevadabound nevadabound is offline
Junior Member
nevadabound's Avatar
 
Join Date: Jan 2011
Posts: 57
10 yr Member
Default Bravo!!!!!!!!!!!!!!!!!!!!!!!!!!!

Quote:
Originally Posted by RSDjaded View Post
I am very offended by your post, I do feel sorry that my husband has to deal with this pain everyday. It is horrible that he is stuck in bed all day and can not go out and fish like he loves, or even do any of the things he enjoyed. I don't give him pity, I support him as much as I possibly can and I try to make his day as happy as I can. Just because I feel sorry for him does not make me act any different towards him. I do EVERYTHING in the household, outside work, take care of a 4 and 6 year old, go to school full-time, and take care of him. I don't feel sorry for myself, I don't have time to!
i was going to write somthing but it was not going to be something nice to that post BRAVO to you jaded , its very rude and when he said we feel sorry for ourselves... I DONT THINK SO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! maybe thats the kind of people he has around him to make him bitter......................................
__________________

.

Last edited by nevadabound; 06-10-2011 at 02:52 PM.
nevadabound is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSDjaded (06-10-2011)
Old 06-10-2011, 07:08 PM #5
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Heart taking the curriculum

Quote:
Originally Posted by RSDjaded View Post
I am very offended by your post, I do feel sorry that my husband has to deal with this pain everyday. It is horrible that he is stuck in bed all day and can not go out and fish like he loves, or even do any of the things he enjoyed. I don't give him pity, I support him as much as I possibly can and I try to make his day as happy as I can. Just because I feel sorry for him does not make me act any different towards him. I do EVERYTHING in the household, outside work, take care of a 4 and 6 year old, go to school full-time, and take care of him. I don't feel sorry for myself, I don't have time to!
Hi there. I think I understand what both you and Pet are saying, even if there hasn't been a meeting of the minds between you: so far.

What the spouse in pain needs more than anything is compassion and empathy. And what neither of you need is to wistfully hold on to the way things used to be or might of been.

It brings to mind something that I wind up posting every year or so, but one that bears repeating. It is drawn from Jack Kornfield's wonderful book, After the Ecstasy, the Laundry, and the experience of Ram Dass (f.k.a. Richard Alpert, PhD. of Harvard, before he got expelled way back when along with Tim Leary for spreading too much good cheer through the land). A good friend of mine was at the public talk Ram Dass gave in San Francisco where these words were delivered, at what I understand was one of the first public talks Ram Dass gave following his stroke. They appear online in a collection of Unitarian sermons, having been apparently redacted to avoid copyright issues:
Ram Dass, is an American spiritual teacher who suffered a catastrophic stroke in 1997. About a year later he said, "For years I practiced the path of service. I wrote books about learning to serve, about how to help others. Now it is reversed. I need people to help me get up and put me to bed. Others feed me and wash my bottom. . . . But this is just another stage. . . . If I think I'm the guy who can't play cello or drive or work in India, I would feel terribly sorry for myself. But I'm not him. . . . I have a new life in a disabled body. This is where I am. We've got to be here now. We've got to take the curriculum."
http://home.att.net/~usnh/20040502.html

It is hard to let go of the things we planned for all our lives, but take the curriculum we must. And in the case of the non-injured spouse, that means being open, first and foremost, to experiencing the pain of the other. To the extent he can tolerate it, put your arms around your husband and hold him close. The couples that do well at this are those who maintain their emotional union. You too will take strength from it.

Mike
(RSD spouse with a full-time working wife, a trial lawyer who comes home at night to a second career, making sure the trains run on time for our now teenage sons.)
fmichael is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSDjaded (06-10-2011), SandyRI (06-10-2011)
Old 06-10-2011, 09:01 PM #6
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
RSDjaded RSDjaded is offline
Junior Member
 
Join Date: Apr 2011
Posts: 16
10 yr Member
Default

I thank you for posting that Mike. It is very hard to let go of the things we used to be able to do. 99% of the time I can follow those words, to live in what we have now. But there are some days that I get overwhelmed, then I look at my husband, and I just keep pushing. I try to remember that today is just one bad day, and tomorrow for me will be ok. I think we both try to be strong for one another, and our kids. I know everyone tries the best they can every day, some days we succeed better than others.

It has been such a relief to me personally to be able to post on here, and to glean the thoughts and advice from others. I thank you all, and hope those in pain, and those close to them have a good day
RSDjaded is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
nevadabound (06-19-2011), SandyRI (06-11-2011)
Old 06-19-2011, 07:07 AM #7
kbltrn kbltrn is offline
Junior Member
 
Join Date: Jun 2011
Posts: 11
10 yr Member
kbltrn kbltrn is offline
Junior Member
 
Join Date: Jun 2011
Posts: 11
10 yr Member
Exclamation Welcome

I know that you all have been here fro a long time but i want to invite you all to my husbands site mypainlife.com but he started his site to help vent and to learn to be that better person. I know that I and many others are members of more then one site.
Just check it out and give him that feedback that all want.

He is getting grumpy again and yes i do pity him but that is no excuse for soem of the actions that he does. All I can do is pray for him at this point. Because I cant take him saying that everything that is wrong is my fault. I m human too,

I continue to pray for all you and keep up all in my prayers
__________________
Taken One Day at a Time
KeelyB
.
kbltrn is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
nevadabound (06-19-2011)
Old 06-20-2011, 04:58 AM #8
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
daniella daniella is offline
Magnate
 
Join Date: May 2007
Posts: 2,998
15 yr Member
Default

Quote:
Originally Posted by kbltrn View Post
I know that you all have been here fro a long time but i want to invite you all to my husbands site mypainlife.com but he started his site to help vent and to learn to be that better person. I know that I and many others are members of more then one site.
Just check it out and give him that feedback that all want.

He is getting grumpy again and yes i do pity him but that is no excuse for soem of the actions that he does. All I can do is pray for him at this point. Because I cant take him saying that everything that is wrong is my fault. I m human too,

I continue to pray for all you and keep up all in my prayers
I just skimmed the responses so I am sorry if I repeat something. I think you need to continue to tell your husband how you feel and that you feel he is not treating you well. I had some issues with my mom where I would have outbursts. This was not fair to her because she goes way beyond the call of duty to help. Anyhow finally she said to me that me being in pain does not give me a pass to have outbursts. She also stated how my condition impacts her that she cries from mental pain and wished she could take this from me. It really put things into perspective that I needed to treat her better and also support her with my condition. Things have changed for the better since both of us don't walk on egg shells as much for each other. I encourage my mom and am happy when she does things for herself and has a life so to speak outside my condition. It helps her cope with me.
It is not fair for him to blame you regardless.
daniella is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
kbltrn (06-23-2011)
Old 06-10-2011, 02:01 PM #9
ballerina ballerina is offline
Member
 
Join Date: Feb 2011
Posts: 393
10 yr Member
ballerina ballerina is offline
Member
 
Join Date: Feb 2011
Posts: 393
10 yr Member
Default

Quote:
Originally Posted by RSDjaded View Post
I am so glad that your husband was able to have a good day!! As you can probably see it is the pain that makes him the way he was acting, it does terrible things to them and sometimes they don't know how to channel all of that. It took my husband about 2 years, and even now on his really bad days, I know to just keep quiet,( well as quiet as we can, the kids are pretty good too, they seem to really understand, even at 4 and 6,)and give him space. As far as how my hubby is doing, I try not to think about it, but here we go. He has the CRPS on his entire right side, including internal, and he now has increased pain on the left side, so it will be full-body soon. The spread from his right hand to right leg took about 8 months, and he has been having pain in the left side for about 3 months now. He was fighting to keep his right wrist straight, even though he told me every day how hard it was, but on June 1 it bent and he can't straighten anymore. He has been walking with a cane for 3 months now. The way I know his level of pain is that he has not gone fishing in over 3 weeks. My hubby LOVES to fish, he would fish everyday last year, this season he has gone about 10 times. It makes me very sad, but I just keep hoping that something will click and he can be pain free.
I agree with ballerina, although I thought you meant a pain pump. No matter what any doctor says, do the research yourself. You are the best ally your husband has.
Hats off to you and all of the others that provide care, work both in an outside of the home and raise small children at the same time! We are talking leaping tall buildings with a single bounds!!!!!!!!!!!!!!!
ballerina is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
RSDjaded (06-10-2011), SandyRI (06-10-2011)
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Help for spouse with PCS spouseofpcs Traumatic Brain Injury and Post Concussion Syndrome 17 08-18-2015 06:07 PM
Wow, does anyone have a supportive spouse? dogodlvr Bipolar Disorder 8 03-02-2010 04:09 PM
Selfish spouse? Alleygator Reflex Sympathetic Dystrophy (RSD and CRPS) 13 08-29-2008 05:46 AM
You think you know your spouse. Blessings2You The Stumble Inn 32 07-14-2008 09:37 AM


All times are GMT -5. The time now is 05:50 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.