Hi Rafighter, I fortunatly have a very supportive husband. My kids help, but they sometimes roll their eyes or sigh. Most of the time I chalk it up to kids being kids. Other times I get mad and tell them how I feel when they act like that. I really feel lucky that I have a great family.

My kids have busy lives, I hate to bug them. I just do what I can every day, surround myself with things I love, my garden, cats, books, movies, I make myself go out to movies or out to eat. At the beginning of RA, I was fortunate to have my husband by my side, but he passed on, so being an only child, both parents gone, I have learned MUCH independence. I'm really proud of how far I have come. If I can't do it, I don't. I never feel guilty. If my pain gets really bad, I get cortisone shots, they make my life bearable, and I can get a lot done.
I do have down days, but I just do what I can, and hope tomorrow is better.
So far so good. =)

Lin
Lin

I do the best I can. My younger son can be thoughtful but for the most part I'm on my own. Hubby doesn't help. It's really not much different than it was before RA it just takes me much longer to do all the things I used to do and sometimes I just can't get to everything in one day. I've learned to not over do otherwise I pay the price the next day. It was hard to learn to take things slow. Physically it wasn't hard because I just couldn't...mentally I would be hard on myself for not doing all I used to be able to do in a day. I don't think there is a good answer it all just comes together in time.

no ..no support from family or spouse ..family has always been not supportive , unless it had to do with my career ..and hubby ..just had the "talk" with him again today ..he just isnt getting it or doesnt want tot..he remembers the old tami and cant deal with the new , he doesnt like change at all and this is a big change..this adds to my disease for many reasons .

My adult daughter lives with me but I have always been the stay at home mom due to a seizure disorder so I never asked for help, I just always did everything for everyone else. This year I was diagnosed recently and it is coming as a culture shock to my daughter that I've changed but she lives here so she sees it.

Luckily she works part-time but I still can't get her to help around the house since she's never had to. If I ask specifically for something she will do it and grumble like heck. I feel we will get to a routine soon with both sharing the work. My disease is progressing quickly and it is scaring her so I think she'll be more willing to help.

I have a hard time letting go though of my independence so we are both stubborn.

My younger son gets it and tries to be supportive. He has some career challenges right not and has a much better perspective than I on "things you can't change." Husband does not get it-still thinking surgery for a torn meniscus would fix it all. Older son busy with his own life, but tries to help. Have always been very independent so... just keeps on.

I am very fortunate! My husband is very understanding and helps as much as he can. He doesn't quite get how much help I need yet but this is all really new for us. My 20 year old son has been and is amazing! He cooks dinner on the nights that I just can't. He also helps with dishes, animals and laundry. My mom and dad live in town and are very understanding and helpful even though they are dealing with his diagnosis of prostate cancer and surgery in January.

Even more amazing is my boss. She has not complained at all when I need to leave early or only work half days on Fridays when I take my MTX. She understands when I say I cannot drive a patient to an appointment. My co-workers are supportive. That is not always common among nurses.

I am very thankful! Lori

I have a very supportive husband who is my rock. If I can't do it, I don't and don't feel guilty. He also came to most Rheumy appointments with me for the first couple of years and learnt a lot about the complexities of RA
Our three daughters are adults and long gone from home. They are also very supportive and ready to help me, especially with little things such as holding my arm going down steps (I have had several falls) or, at my worst, cutting up my food when we were out and I couldn't use my hands.
Four years on from dx, I still have "down" days when I can't do what I want and fatigue is up. I also start questioning why nothing has controlled my RA, yet, despite early diagnosis and aggressive treatment.

i create intentional rings of support from friends when I need them and from SO's when they feel like they want to step into the ring. i don't have any emotional see saw from people not getting it. when it comes to work, your work crew just wants you to do your work, period, which i do more or less. when it comes to home, the launching older teens just want to launch, period, and I support that. I use my energy to be independent and support myself and move everyone around on a big chess board. child a to west coast to see child b at his college. both home. one to europe on study abroad. next one wants to transfer. the sheer burden keeps me emotionally occupied and physically fighting to stay in the game.

i don't bother with blood family. i don't need them to get anything.

when kids were younger i did spurts of conservation of energy to get by.

for my friends i concentrate on their illnesses (MS for one, IBD for another) that type of thing. they know i am wounded by the change in life plans for myself but that i have spent the past six years rebounding.

i try to protect my boundaries of sleep and veganism. i also try to keep negative energy away from me.

i have become 300 percent better at self healing!

hugs
Ros

I will never understand why I have been blessed with such an AMAZING, supportive husband. I wish all that suffer with RA could have a spouse like mine.

My husband is very supportive but sometimes forgets how exhausted i can get... he usually doesn't talk about it or ask questions. But he supports me in his own way by being very appreciative.

My daughter was gone to college w when i became ill. She doesn't really get it but she tries. I'm glad she doesn't live with me...Lol... The disease and the fact i don't do all that i used to makes her angry. It took me a while to realize she was more angry at the situation that at me. But she is young and living her life and 1500 miles away. It's not a child's job to worry about their parents until they are old.
My mom is supportive. As long as she doesn't have to take care of me...Lol.... in the beginning i needed a lot of help and she resented that. But now that im better and adjusted she is much better. She has her own issues... everyone we see every day is fighting some kind of battle....

I can't speak to a lack of support from my wife. She is my rock and my strength. She has supported me since day one and drives all kinds of research and makes lifestyle changes that support me. She, and my dogs, have taught me so many lessons about love and family.

That being said, we are both alpha males. We are driven and like to be active. RA is a humbling disease for us.I've needed help getting my arms and hands moving in the mornings and I've needed help getting a shirt on. Learn to accept your limitations and stop judging yourself. When you feel like crying....cry. Let people see you hurt. Express your thoughts and feelings. Show your joy as well as your pain.

RAfighter, we are looking for a quality of life. SO, cleanse yourself of the things that bother you. Stop keeping them in to spare anyone else's feelings. It will only cost you in the long run. When people support you, let them know. When they don't, let them know....Ok, I'm off my soap box for now.

you can also try reworking your energy to see where you rebound from. i am an extroverted introvert if you would...meaning I heal best alone. support around me sometimes drains me. i can't explain it. but try this: if you are not getting what you need from your SO/Spouse/partner/gf/bf spend extra time trying other self healing behaviors and celebrate the absence of noise from attempting to externalize help that can sometimes be capricious (in your case) - hope that helps!

Ros

RAfighter,
I figured out a long time ago that the only person I can really count on is me. So on my horrible days I sequester myself so that I don't have to look around and see all the things that need to get done but aren't. My husband thinks he is trying to help but he just frustrates me. ie folding half the laundry, Loading the dishwasher but letting a pan sit in the sink for 4 days. My boys do what ever I ask them to but they are not often home. I have just learned to slough stuff off. We just have to get through each day the best we can.
I just had surgery Monday so I am really down and out right now.
I hope you find your coping tool before the stress is too much.
Hugs,
Jan

I wish I had the magic answer for you. I've found most members in this group have the same issue. It may not seem possible to someone we have the symptoms we do, or just hard (let's say impossible) to grasp, and the only real support and understanding I've found is on this site, I am so thankful!!!.
I've fallen back on my longtime philosophy-expectations lead to disappointment- with this illness as it involves other people as well. With the exception of my adult children I haven't said a word to my family or anyone else about it because I am certain based on past history it will result in their display of ignorance and upset me more and none of us need that. In some ways it is easier for me not having to worry about a significant other at the present time. Wishing you peace and understanding.