This is my first time posting anything. I am not getting any family support and it is so hard for people who don't have RA to relate or even try to comfort me. I am 37 and I have had RA since Mar. 92. I already have a hip, knee, and knuckle replacement. I just had surgery on my big toe to insert a spacer and a screw. I use to bounce back quickly from surgery, now it takes longer and my family doesn't understand why Mommy is not up cooking dinner or something. I'm on disability right now, so I don't even have an outside life. I get so angry sometimes. "Why me, and it started so young." All people say is "there are people worse off than you." I can get so depressed and down about myself. I just wanted to join with people who can relate. Is there any good advice out there for me? Everyday is just another day to hang on and make it through. Some days I don't even enjoy the sunlight. I just face another day of pain and discomfort. I started the new injections of Retuxin every 6 months, which seem to help but the damage is done. Basically, all my joints are gone. I face another hand surgery in the next few weeks. I did have my youngest son in 2001, in the midst of RA. He was premature, but is now a healthy 5 year old that has too much energy. I can't take him to the park and play with him like I want to. I am always tired, even when I just wake up. I'm just looking for some one that can relate and offer suggestions,if they have some.
wow... my heart broke reading your post. I hear you!!
I am 35 with RA, SS, and fibro... and on disablitiy also. I have no children except the kind with fur, so I cannot imagine how you are doing what you do! You are amazing!!
take care and hang in there. I remind myself that there are people worse off than me out there... and here you are, worse... and people are saying that to you! That is crap! You really have good reason to be feeling upset. RA is hard enough by itself! I am cheering for you!!
Family support can be the hardest thing to come by. My kids are good, but the rest of my family was a disaster. It took my parent's both getting deathly ill for them to even begin to comprehend what it's like for me.
I lost a lot of people that I thought were my friends. But it's just like Pepper said, people don't want to slow down or be bummed out.
I say educate them. If you have to post up printouts all over your house about the consequences of having RA. Teach your kids about your limitations and the disease. My son and I have had some real fights about it. But he is trying. He even told his sister just today that it's his dad's fault that he can't give me the emotional support I need right now when everything is going so wrong with my body. I think that's a major milestone.
The other thing you have to do is find the people who do care and who do understand. Gravitate your energy towards those people. I have a very precious uncle that I write everyday. Since he is in his late 70s, he knows how the body falls apart. Almost every day, he has some encouraging word for me. I have certain girlfriends that I can call and that I email. I discovered a lot of them have FM.
Being here will help you. Spend your energy on what makes you happy. Go on strike if you can't get help. They can't afford to lose no matter how much they seem to take you for granted.
You obviously have the proof of your illness with all the surgeries. Now, demand the respect. That's right, demand it because you deserve it.
I don't buy that old line that there is always someone else worse off than yourself. That is such a cop out statement for not caring for the person that is right in front of you. It is just another way of saying, "I don't want to hear it." That's very selfish on their part and you should let them know how you really feel about it. I don't want to be compared to someone else. Pain is pain. Grief is grief.
Here, we are in the same boat. We are at different positons along this journey. But when any of you tell me about how much you hurt, are scared, are grieving, are angry; I feel that because I know what you mean. I've experienced the same emotions and the same pain.
You deserve better than what you are getting. Try to find others that help you more. Find someone to go with you to take your son to the park, even if it means hiring a teenager. Don't miss out on the joys just because you can't do them the same way as before. Find new ways and new joys. That's how you make it through these terrible trials.
I so much hope it gets better. We all get down and just want to give up. But something keeps us going.
CureRA, Pepper, and Deanna,
WOW !!! I couldn't have said all the above better. I have the same problem with my mom, dad, and 2 brothers. I can't begin to tell you the trauma that it had caused in my life. It's takes a lot to focus on the one that do support you and ignore the others. It's takes a lot out of you.
I too am on disability and miss the "outside" world. However, my children and husband are quite understanding and loving. I have lost many friends through the past 6 years. But, I try to remain focused on those that do support me... and I in turn support, listen, and am there for them every chance I get. Either in cards, e-mail, phone calls etc.... don't let the fact that some people are morons control how you view the others that do want to help.
I believe that everything happens for a purpose... with that comes strength and responsibility... ergo this board, communicating to others with the disease, some that don't (maybe at the supermarket), or that person that just looks down and needs our smile to lift them for the day. I just have to believe that only us (the STRONG) could possibly withstand what these disease put out... Because I KNOW there is not a lot of people in this world that could go through what a lot of you do. Remember to focus on what you feel in your heart... not what you think others are thinking or saying. I know it's hard... I once was a very type A personality... worrying about everyone and everything. You can't any longer. You have to care and love yourself more than ever.
Remain strong... remain focused but, MOST OF ALL you are in the right place for kindness, understanding, and UNCONDITIONAL love !!!! Feel free to vent, whine, complain, jump for joy (okay maybe not jump) but, remember you are among friends and caring people NOT JUDGES !!!!!
*hugs*
Olive
Oh I am so sorry to hear about all you've been through. My heart goes out to you when I hear about not being supported at home. That is my situation too. My grown kids understand, but my husband has a hard time understanding that I feel more or less sick everyday and I can't predict when I'll have to cancel out on plans. When he is sick I rally all my stength to support him but I feel I give a lot more than I receive. This is not to say he is not loving, it's just that he really doesn't understand what it's like to live with this every day.My brothers and sister live very far away and really don't understand my life at this point. I am only occassionally in contact with them and then it's always about other family matters. They don't like to discuss my illness so I usually don't.
You have to find support where you can get it and it might not be home. I find this site amazingly helpful. I also joined an arthritis exercise class where I have made many good friends I can talk about my problems with. There are usually support groups through hospitals. Make your own fun. What ever gives you pleasure, budget that into your day and don't count on others to provide it. For me, a hot bath, good book, a movie, painting in watercolors, all give me pleasure and have a place in my life. Of course I do things I enjoy with my husband like dinners out, short walks,etc but I rely on myself for the majority of my fun.
CureRA. You got lots of good advice from some experts. I just want to say WELCOMEI too am on disability for the last 2 years and do not enjoy the things I did before being diagnosed with R.A. I also have a child and can relate to your feelings of guilt. Please know that you are no longer alone to deal with this! I will definitely say a prayer for you tonight! I hope tomorrow will be a better day!
Your friend,
Michelle
Dealing with every aspect of RA is about waiting....it truely is..