Problem? What Problem? But to give hubby credit, he is dealing with his own physical problems which make mine look non existent right now. The Grandkids and my youngest daughter, (who all live next door) are super helpful. They will do anything i ask, and lots of things that I don't ask. They see me daily and know how I struggle.

Fortunately, my RA does not bother me much (as long as I take my meds like a good girl). I can still do most everything I did before RA. My husband could not help me at all. He's disabled, can't drive, can't see well, can hardly walk, and his on kidney dialysis. I don't know what I would do if my RA was really bad....my sister is very supportive, but thank goodness, I don't need any help with me, only my husband needs the help! I will say though, that when I was first diagnosed, my son read all about the disease and announced he was going to come back to California and run my business for me! What a sweet gesture it was! I assured him I was fine and I still put in a full work week. (of course, I am sure that at anytime my RA could take a turn for the worse!)

I think for the most part we look normal on the outside so people/ family tend to forget what is going on inside our body's. My husband for the most part understands but sometimes dose not want to listen when I say I am not feeling good and I hurt and can't do something that day he will still push but his thinking is to keep me moving which is a good thing but there is times when I need to stop and listen to what my body is telling me or overdoing it and paying the price.

My husband doesn't really understand what RA is all about or how serious the disease can get. I think part of it is that for years I had complained about my pain and stiffness and he got sick of hearing about it. I was in my thirties when I started having my physical problems . I would see my doctor and try to explain how lousy I felt much of the time and she would order a couple of blood tests that would come back negative and then I would have to explain to my husband that my PMD couldn't find anything wrong. I tried to stay physically active the best I could but I would be in so much pain after any kind of strenuous activity that I couldn't help but complain. It wasn't until thirty years later that I finally got diagnosed with RA. I think after all this time that he has become hardened to hearing how I hurt much of the time. My complaining was never to get sympathy, but rather I was hoping that he would understand that something was wrong.
When I told my husband that the Rheumy had found that I had both RA and Sjogren's syndrome he really didn't have much to say nor did he ask any questions. I am disappointed that he hasn't attempted to learn anything about these autoimmune diseases beyond what I've told him.
My adult children have shown concern and have asked questions both when I told them what my diagnosis was and several times since. My son even went on the internet to investigate what my symptoms could mean and he came up with the Sjogren's syndrome piece of the puzzle before my test results were back. By then weird things were happening where I had such terrible dry mouth along with joint pain . I was touched that he cared enough to spend his time on the computer trying to figure what was wrong with his mom.

This has been hard, lots of changes.
I did everything & I mean everything. All 5'1 hundred pds of me.
Learned the hard way that handicaps your family.
When my husband & I first married he worked mega hrs so I just took care of it all.
Now I can't do half of what I did.
Before my DX OF RA my doctor told both of us I would have to learn to live in chronic pain daily with spinal injuries. He simply refused to believe it, I think same with RA.
It's taking it's toll on me. Love does not conquer all.

There is no way anyone can understand I realize this.
Changing over 20 plus years of habits is hard.
If I'm bed ridden sick my family is there, understanding & caring.
I'm OC about my home so they just feel in to picky.
We are helping my daughter with my grandson also.
To top it off my husband is limited to.
I've tried to get him to educate himself as he's always asking why I sleep in now, but no. He simply lives in denial & it's getting to difficult for me to deal with the lack of understanding.

Superwomen is gone. I've taken care of everyone in my family who needed me as I'm skilled in health care. Now I can barely brush my teeth in the morning.
People believe what they want. No matter what's in front of them.
I have a super giving family, they all have hearts of gold but they can't accept that I'm no longer able to do it all.

Depressing to realize to late you didn't help by doing it all, I did the opposite & made my life much harder.
At times the future scares me. Will they ever get it?
Could be worse right?
Blessings, Sammy

I'm like that too Sammy, in hindsight it wasn't a good idea to "do it all". Also I was so determined not to have my boys think of me as sickly that I never asked for help or talked about it. Hubby doesn't like to talk or listen about stuff like that. That is why it is so nice to have this forum, in the old days this disease was just as isolating but those people didn't even have the internet to reach out to for support.

I understand too doleo how much it means to have someone care enough to either google RA or ask about it. A few years into RA a girlfriend started to ask me questions about it and she told me she had been reading about it, I was brought to tears that she'd care. I don't cry easily either....seems though I have this weird reaction if people are nice, that's when I cry......luckily it doesn't happen too often;)

This is all very apt. I have been the go to person & mighty mouse, my home is the family hub for holidays. I don't think anyone really, really gets it. My husband and my would take a bullet for me and don't understand I just want a nap & maybe a maid! Hope everything is well. Trish

I know my partner cares but often he just ignores me when I'm in pain. Part of this is him trying to cope and part is that he has become a bit immune to it all. Sometimes, I just need a hug and a caring tone and other times, an offer to help me move, bend, get up etc. These offers are few and far between. My daughter, over time, has become even more aloof and stays away from seeing me for 3-4 weeks at a time despite living nearby. In three days, she moves to live on the other side of the planet for good. I don't want people to feel they have to arrange their lives around me..especially, not my young adult child who, needs to spread her wings and live her own life. As far as partners go tho, avoidance, I dare say, is a common way they deal with illness. I find it hard and often feel angry and resentful. I"m always thankful and appreciative of the love and support but just wish there would be more reaching out to me instead of turning away during the really hard periods I go thru. I usually just struggle thru and try and act as normal as I can. I break down sometimes ..I allow myself that when I need to as It releases the stress. My tearful times have usually also been ignored so, I try to limit my mini breakdowns to when I'm alone. I know that many people find the pain of another pretty intense to be around and I hate that it is an interruption to their otherwise, normal and happy lives. I guess they will never know how it feels for us as perhaps, we don't know how it is for them. I have to reconcile that my spouse needs a lot of time away from me to cope with it all. Being unwell puts you in a very vulnerable head space so, I try not to be too needy and have always attended all my appts and even surgical procedures alone. Basically, besides dealing with pain and immobility but looking normal on the outside, I just try and keep it together for me AND for others around me... even if inside, I'm screaming.

Wow chimein! Your story is so much like mine.
My husband does the exact same, time away, infact the worse I am the more he's gone.

He once said he can't stand to see me suffer, well it's hell feeling alone during rough times.
I keep plugging along & say little unless it's under my breathe or I'm so miserable I loose it. I feel like a robot.
Much of the time I just hide & have my 10 minute pity party crying in private, then put my big girl pants back on & face the world.
If only those who love us understood how hurtful it is.

I'm sorry for you & yet relieved it's not just me & my family.

I don't want pity & I sure don't expect anyone to give up anything for me. I just want understanding enough to give a helping hand every now & then. It's hard feeling isolated. I've never asked for help til now. It would be so nice to not have to ask but to have those I love the most offer.
It's as though others can In no way comprehend how miserable it is to not only feel so bad but to loose part of who you were.
God knows many of us are forced to give up & change our lives in ways we never imagined. This was not what I planned for my life.

I'm in the worst flare yet, it seems the past month or so I'm walking A tight rope ready to fall over that edge, but I do what I can every day. Rarely do I ever get a day for just me, it's not enough & I have no more to give. Still I feel my family waits for the old me to kick into gear.

I'll be honest & say I'm angry. Never have I put myself first. The little help & understanding I need should not be so difficult. God knows I would do that for my family.
I'll never understand.
With that being said I know it could always be worse.
I'm just stronger, I have to be. I hope one day I can come here & say different, that my support system here is great. Maybe one day.
Support can make all the difference.
This has changed every aspect of my life.
Sammy

Hi everyone, I am single, so I don't have that special someone to always turn to for support. I'd ask you to spare a thought for those in my situation. My family and friends are an amazing support and yes I value my independence and don't like to "bother them" when I need help. I am very lucky to have my close group of friends and I would do absolutely anything for them.

You are right on Chimein and Sammy01. I think that a little understanding and compassion goes a long way. I hide my hurt feelings too and suffer in silence much of the time behind closed doors because I feel that he doesn't care.

And God bless those that don't have anyone they can turn to for help when they need it. Steve, I do think of those of you that have no one to help and my prayers go out to those as well. This forum is a great reminder that there is always someone worse off than myself. Blessings to all.

I kind of think that's what we are saying Steve, sometimes even when you have a significant other you are still alone. Because you are married friends/family don't think to offer help or support because you have a spouse and sometimes it just doesn't work that way. I think for many with chronic illness whether you are alone or not it's a lonely disease.

My husband really "got it" when he started to suffer from osteoarthritis himself--I saw the light bulb go on ;o)

I guess it's safe to say many families struggle with this.
Well we are not alone are we?
In reality before I suffered from chronic pain I could not fully understand.
Although my older sister was DXed in her late teens/early 20s, she's now in her late 60s. My parents & family bent over backwards to help her. It comes down to educating, understanding ( the best one can) & empathy. If the family is struggling imagine how we must feel?
God bless you all & yes my heart goes out to those who go it alone.
Sammy