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Originally Posted by abrown176
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.
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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
