Feeling down and out
 

Im so upset! My husband says that I should not be on here or any sight. He said all I do is sit around talking to crack heads, and self diagnosing myself. Im told him that I have no one to talk to here, and that I need someone to talk to that understands what Im going through. I need to talk to other people who can sympathise with what I face every day. He gets upset because now besides working he has become Mr. Mom. I know its hard on him to but I need someone and he is not there in the way I need. I feel if I sit here and keep all this bottled up I will go phsyco. I need communication. He says he is paying my phyc doc to talk to me. I like to research on RSD. If I don't take care of my self no one will. It is hard to find a doctor who knows or believes anything about RSD in my area. I want to be upto date on the newest things with it. I dont feel im doing any thing wrong. I dont know what to do. Should I just put the computer down and give up. If tryto go on for my children but if you don't have somone who understands and listens to you how are you to make it. My depression just keeps worsening, but I don't think its from learning more about RSD. I feel its because all I ever do is argue about why I don't feel like going or doing and no one listens to me. If I find something I find interesting I want someone to read. They don't want to!
This is just like my safe place were everyone knows what Im dealing with and no one judges me. Is it fair to have to give it up? Should I stop looking for new info on RSD? What to you think? Do you think hes right or is he over reacting? Thanks for any input and advice! It will be greatly appreciated and considered.

Now abrown..I don't mean any harm here but..he is OVERREACTING!!! Obviously he is not the person suffering with RSD is he???? You are NOT doing anything wrong..You are receiving information, guidance and care from fellow sufferers..Until one walks in our shoes..they have not a clue what RSD nor pain is about...Please... continue to receive our support as you need to know you are cared about and that we ll need support and education on our condition...Please..take him witha grain of salt and know what is good for you in your heart...just poo poo him...I have to say it again..but here I go.... Sir..take a small sip from my RSD cup... lets see how you fare!!!???!!! You are fine my dear..keep reading and keep posting or you will feel lost, unloved and hopeless...we are your friends. Oh btw..we wish we were self diagnosisers..maybe we would be in such pain and we find some answers...

Hugz, Kathy:grouphug:

Hi ABrown,
Please don't give up your research and your postings on the board! We need to communicate and keep in touch, even if it is infrequent! I often don't have time to post, especially during the week, but I am comforted, informed, and inspired by reading the posts of other RSD'ers...
When I read your post, and how your spouse is reacting, I had an idea of why he may be reacting this way.

It could be that he is intimidated or threatened by the friendships you are forming on the message board. Of course, I don't know the personality of your spouse, but could it be that he doesn't want to share you with the people you meet on the boards, and with whom you communicate your deepest feelings, thoughts, and your need for the special bond that exists amongst other RSD'ers?
I could be completely off the mark here, but I thought I would share my thoughts.
Please stay in touch amd take care of your needs!
Hope4thebest xoxox :hug:

Hi I am sorry you are having this family problem. I can relate as I am having family issues in a different way. While I know that are rsd impacts and takes a toll on our family they need to learn to cope as well. I have real issues when people tell one who is dealing with this how to cope. I feel it is very important to use your voice and tell family etc how to help and what is bothering you. This does not always help like for me I was in tears basically all day after a conversation with my grandfather but at least I got some suff off my chest. I know for me I waited too long to get into psychiatric care. My depression and anxiety got way out of control. Is there a way you could go? It has not helped my pain but has helped how I respond and view to it. Though I am going through a hard time right now in all aspects. I have a few people I met through here and have been close friends with them for 3 years. Even the people I just respond or respond to me here help on many of the hard days to feel I am not alone and also to push through those very bad days. I have had times where I took breaks from the boards at times cause I needed to as well. I guess my point is to look at what you need to do to get through the days. If you want an email buddy I am here too.

HI
 

i agree with the others- DON'T stop talking and searching- your husband just doesnt get it. I don't know where u live but if you go to rsdsa.org there are support groups listed by state...take a look...

Debbie

i agree with what everyone says here...thanks for the site debbie..i need to check it myself..

Hi abrown, Please know we are here for you. This disorder is extremely difficult for those that have it and our closest family members and friends. The lose of one's health is comparative to a death in a family. There are, of course, different degrees We go thru so many losses, our good health, our ability to work, which brings us joy and physical sustenance for our family. Our physical health, emotional health is compromised. Our future plans and dreams are in question. We absolutely need support and comfort. we need to be educated so as to make the best decisions.
It's understandable our friends and family with limited knowledge are scared, they want things back to the way they were. As bad as we want to work, cook, clean, do the grocery shopping, we are limited depending on where we are at. Then like was mentioned, they don't understand the interactions of a support group-see us getting closer to ones on the website and maybe feel distanced from us.
So what can we do? Do we have our own computer? Could we work on the computer when our husbands are at work? or at night? The less we speak about our postings the less friction comes up. Perhaps we could buy a book and when we feel like speaking about our situation and how we can keep hope alive, we can speak about the book. We don't want to be a deceitful person, but we are obligated to irritate our families and share every detail that irraiates them.
There are communication skills we can use with our friends and family that help them understand us, but not blame them. We can saw: I feel sad I can play tennis with my kids anymore- I miss working, I can't wait till I'm well enough to start working again. When you get angry with me for not cooking tonight, it makes me feel so sad- I want to, but the pain is unbearable, especially when it rains, kinda like people with rheumatoid arthritis are affected by the weather.
Under RSDSA.org has he McGill Pain Index It list RSD as 42 on a scale of 1-50 above amputation, child birth and cancer. That's powerful-we could print that out. Putting in our zip code could give us closest support group and phone number of leader. They are usually once a month. Their yearly meeting was held here in Scottsdale, AZ last year.
How old are you and your children. My daughter helped me get to physical therapy and took her homework while I went thru therapy. It's been 15 years and full body, internal. Thankfully my husband grocery shops, cooks, cleans, He has times of frustration, but is not jealous of my friends on the forum. I'm cautious on how much I talk about everything and what I say.
You have a legal, and spiritual responsibility to care for the body you have been given. That belongs to you and no other. It's your decision to do the best you can do. No one has the right to take that away from you. You want to be the best you can be for your self, your children, and your husband, even if he doesn't understand it or not.
I hope you stay with us and let us 'be there' for you and share whatever might be helpful. Take care of yourself. Like Daniella said, sometimes we can be overwhelmed and need a break from informaiton intake. Pace yourself and do a little everyday to keep mobile and moving. It's so important in the long run to stay moving.
One of your new friends, loretta with big soft hugs :grouphug::grouphug:

Let us help you!
 

I agree with everyone as well. I am having a hard time as well. I tell my hubby every thing.. But this is taking a toll on him. Lately since I have found this place, i havent told him everything and he seems more relaxed and less stressed. It seems to have helped him as well. I have told him about how it has spread and the medical aspects so he is aware. But the personal things he doesnt need to know.. Because I NEED them. Not him.. And I have been happier since i have found it.. Some stupid questions i asked, but drs wouldnt answer.. you all did.. I think maybe you should stay and just talk to us. just not tell him.. Its like another form of therapy that you dont really pay for.. I feel its better for you to not keep it inside, but to let it out to the people you trust, and you obviously trust us. so pm us and we can talk.. we are all here to help each other. Let us..:hug:

Hi everone! Thanks for all the insight. He has said he is sorry for getting angry with me, but that I need to understand what stress it has put on him to be the bread winner and then be Mr. Mom. I do try to understand him. I know he is nervous about my upcoming surgery. Maybe he just needs some one to talk to too. It has been alot better atmosphere around here since we had it out and told each other what we are feeling. I will not just tell him everything anymore. It will be a process of selection. Well im hungry going to get some food. Just wanted to keep you updated. Again thanks for all your encouraging words and comfort!

I just had to answer your concern. I am one of the lucky ones-My husband has been my 100% support since my illness. We are probably older than you and all 6 children are grown. However, I do have a few suggestions. No one can understand what we RSDers feel,and I wouldnt want them too!!!! Is it possible that you can be here on this site with us who understand by maybe limiting your time on puter to certain hours or time restraints? Then make an effort to find SOMETHING to spend time with hubby that both of you enjoy-Cards,Games,Cooking -ANYTHING so that he still feels special!! And by no means give up your research! your hubby may be scarred and certainlly has lost his love to a monster of a stranger, RSD!!!!! Hope this helps-Fondly-Carol

I am very happy for you.. It does put alot of stress on the spouse.. I wasnt going to tell my hubby the new symptoms i have been having.. Where i am now currently hurting.. Just going to kick him out of drs rooms, and keep it to myself, to minimize his stress. and he got upset with me.. So i explained that i didnt want him to have any added stress, by dealing with mine, and he says that hes my support system. but my personal feelings that i talk about on here is ok he dont need to know.. or the therapy i dont have to share.. but pain he wants involved it.. which is weird, but ok whatever.lol. so share what he wants to know.. and share with us what you need otherwise.. we understand more than he does. that way you get out what u need and you guys are fine.. i am always available if you need a friend!:grouphug:

Grrrrrr

I'd be tempted to tell your husband if he doesn't let you have Neurotalk to destress with, the next site I'd be checking out is eharmony.com !

I understand that our spouses' have difficult lives too....picking up the slack for an out of commission member of a partnership is not easy.....and they should have a way to release their stress too, but they do need to understand that deliberately trying to heap more stress on us is just going to make our pain worse.

I'm happy for you that the two of you were able to talk it out