Brittany,

Let me offer a big, giant welcome to the board. You will like it here. We have a very supportive and informative group!

Please know that you are not alone in regards to your family. I have tried to the best of my abilities to let Mrs. Wino know what this disease is like, what it takes from me, the grieving I go through, the pain, unrelenting fatigue, and my displeasure at canceling events at the last minute.

Mrs. Wino has told me in the past month to "just try harder." This stung me pretty hard. Because of this uninformative response, I know that I have not succeeded in getting through to her.

It does affect our marriage. She told me within the past month that she feels like a single woman at times because I never go out with her. I try to let her know that I work full time and this has really taken a toll on me physically. In fact, my wife was sitting next to me today when my physician suggested that I decrease the number of hours that I work because my symptoms are worsening.

You are not alone by a long shot. But, I'm very, very sorry this disease has affected you in this way. Family has always come first in my book.

Please hang in there and keep the lines of communication open with those you love. This will go a long way.

Regards,
TheWino

Hi Brittany!
You found the right place. I dx almost three years ago, and I can tell you it does get better. The problem is that it takes a while (and feels like forever) for the meds to work. My husband tries very hard to understand, but sometimes he will say something that tells me he just doesn't get it, just like thewino said. I haven't found a solution to that one, yet.
Sending hugs....

It is very hard on a spouse. They don't get it. My husband admits to that. But he tries and he gives me a break when i tell him it's a bad day. It's been 4 years and I'm gradually getting better... so that helps. But in the beginning it was difficult. We had to do a lot of communicating...luckily we are both older and give each other room. And he is a very gentle person. I have been lucky. Most men aren't as understanding.

First of all, welcome to the land of good cheer, we try to build you up, not down as so many of our family members do at times. I wrote about this very subject awhile back and had some wonderful replies. You can go to my profile and check out my post and you'll find it.

When I first found out I have RA, I told my doctor about this board and he thinks it's great that we share with each other, my wife thought the same thing at first. Just the other day I was telling her about something someone said here and she told me "you need to stop reading all that stuff, all it does is bring you down and makes you feel worse." Whoa.....how a few months can change things!! I look at her, like you've got to be kidding me?? Anyway, I find it helpful to be here and from now on, I'll keep things to myself and not burden her with the heartaches we all go through.

Hello ans yes ..all understandable ...for myself ..my hubby is used to me doing everything here at home ..like everything ! and still being a bit of a old fashioned wife ..like waiitng on him ..once this hit me and hit hard ..it was HORRIBLE !!! to pick things up and evren touch things ..just touching things send pain waves in my body ..then the noooooo energy .or ready for bed by 6 ...yes it has affected us a little...and then i becasme angry ..angry at this disease , mu kife changing ..and him still expecting me to wait on him when he see how bad this is ..and crynong as he just stands there looking at me because he dosen get it ..he's a good hbby ..but now i need him ...
so this has been a while and a light bulb went off in my head , wow this is a change for him as well ..so now when he comes home from work i have a glass of wine waiting for him and i went back to asking how is day went ..and a littel familiar things he remembered and i noticed him changing a little ..he seems more understanding ..so i guess i had to shake off the shocked feeling from the beginning of this ..to help us stay us ...i know all men arent the same ..but for my guy ..he doesnt adjust well to change ..he likes routine and familiaritites ...wishing you a lot of luck ..and our marriage vows said ..in sickness and in health ..that goes bothe ways .

Welcome to the group:-D I understand how you feel. My husband is a very active person and I used to be we would jog and walk and do all sorts of things together. However being diagnosed with RA in Jan this year it's been a long road. I have a hard time getting out of bed and doing simple things and I can no longer work. Sometimes my husband takes care of me and I feel horrible for that. We have 2 autistic children so when they are in bed that's our time to watch a movie together or make snacks in the kitchen or do anything and it seems now that time is used for him to help me around or if i'm thirsty I can't open anything anymore and he gets frustrated by it not meaning to just after a long day or work he wants to sit down which I totally get. it sucks but once I get this figured out i'm hoping to be able to do something again as a family. Go out to eat, or the zoo. My husband made few changes around the house for me that helped me to be more independent such as levers instead or knobs on the doors he hung up my pots and pans so I didn't have to bend. He does all the yard work and the laundry since I can't do our stairs and I do the dishes and hang up clothes little trade offs and we bought a nicer bed so we watch movies in the bed and that way i'm all adjusted right and I can sit without pain for the most part. Its hard on a marriage but compromises make all the difference. Also you will have good days and bad days and i'm sure your husband is understanding, but maybe on the good days you can do something for each something he likes and something you like. Don't over do yourself or it makes it that much worse (I've done it) I try to clean house and take care of the children and run errands and be super women lol and it's not in my cards anymore so I just make a list of things I need to do for the week and as the days go by I cross off the things I was able to accomplish and the things I can't my husband will get to. Team work is crucial. You will figure out a system it may take a few years from what i'm told. But i'm just now starting to get back on track still hurting a lot but doing the things I can manage. Last month I was very emotional as well. I would cry a lot. And if I couldn't open something (canned good, box) I would cry some more just being frustrated and feeling defeated. I told my mom I felt whinny and I didn't like myself. I felt like I was always saying I can't or I hurt today or some other thing crying about I bad I feel. I have no one to talk to most of the time husbands at work parents work. My friends and I have fallen apart since I can't meet up anymore. So I vent to my mom but sometimes I feel like it upsets her to know how much discomfort I have so I've been trying to make an RA notebook and I just write all my feelings about it down. Sort of helps. I'm sorry you are feeling this way and I hope you find some way to make it easier on you two and yourself.

Thank you and thank you again to all of you. Having someone read and respond makes me feel special and I appreciate that. I have had RA for two years now. I have some days where I feel great. And others when.. Well I'm pretty depressing. If you were to meet me in person you would see that I'm a positive thinker. I always try. I think here is where I will letting guard down where I tell the truth to you people And myself. Today I came home instead of going to school. ( I work and go to school). It embarrassing to go and be unable to type notes, instead just trying to find a comfortable position..I don't like to use the work disability .. I haven't come to terms with that yet. I don't ask for help at school. I write exams when my hands feel like crap and probably just get more sad in doing so. . I love my family I don't know what I would do without them. But like tamiangus my husband also likes routine. He is not mean or demanding. I actually think he is OCD. It's hard for him to see me in pain and always find words to say. I feel bad for him. This is hurting us.. So many times I just pray over and over again for God to take RA away.. But, I know there's a reason. . Sunday at church I cried the entire first part of singing. I was in so much pain. The sermon was about being broken and how God uses brokenness. It made me feel useful and reminded me I have arthritis, arthritis does not have me.. I have it for a reason. I just gotta find out what it is..
Brittany

RASucks you have a good thought in your head .ive thought the same thing ..the reason ???? hope you fnd that out ..and stay strong ..its a battle at times nad gothca on teh hubby ..mine isnt demanding either ..but likes his routine ..he is A.D.D. and A.D.H.D .. i guess all here on DS can compare some notes and see what we are like in similarity ..dont be hard on your self ...and aks for help if and when you need it...
once i told my hsband i needed a cane ..he looked shocked and it hit home ..he is sad now as well ...life is daily the same ..good and bad ..its just life ..but sometimes harder for some to adjust to big changes ..stay strong !

Sick humor is big in my house. Always has been, always will.

I just remind my hubby every now and then that I WILL be the one by his bedside once he gets old, worn out, in his death bed from a heart attack, can't recall who I am because of Alzheimer's, with skin tags, warts, and all. It won't be a pretty picture but I WILL be by his side.

He usually looks sober or ornry when I say that, then I laugh and say, "Because by then I won't be able to move my wheelchair and neither will you!". We both laugh then. He gets my humor. It's part of what makes "us" work even when our bodies don't.

We all change. Some folks faster than others. If you can learn to embrace your changes and his and he can do the same it will all be good. Really. ;-)

Welcome to the "Gang" Sorry you found us but glad you did.

My suggestion is .... be one with each other. Share it all.

We and I mean ALL here are touched in adverse ways by this "stuff". We live the concerns as you are and we understand the confusion, the awkwardness, the tribulation.

Hold on to each other and share

Be well and Peace
Bluedogs2

This can be a tough one.
To be honest each person is different.
Those vows " through sickness & health" mean something.
It takes a compassionate person to attempt to understand when dealing with life altering changes like RA.

My heart goes out to those younger people hit with such challenges.
The good thing is marriages that deal with a spouse hit with something like RA can be stronger then most.
Perhaps telling him what you've said to us. That you want to give him what he deserves. In order to do so you'll have to put you first.
Small things, gestures can go a long way. On good days make the time for him.

One thing I did not realize is living in pain, exhaustion & etc... Made my husband feel helpless. He can't fix me & that bothers him. I believe he lives in denial most of the time.
I let him know I'm having a bad day at times but I vent here & to my sister who's patient enough to listen.

I do what I can & try to contribute as much as I can.
That has backfired at times as he has his moments he thinks I'm still superwoman.
28 yrs of marriage for us. If anything I wish I took the time to explain more early on & focus on the things I could do to make him feel special.
There is nothing easy about living with this disease & pain.
Remember it may change what we can do from day to day but it does not have to change who we are on the inside.

I'm hoping that is what our spouses love the most about us.

With that said There are many couples that I know of that do not face the challenges we face, yet see many of these couples struggling.
Without realizing it I think many couples in your situation become more caring, patient & understanding.
We see & appreciate small things that some may take for granted.
Blessings,
Sammy

well said Sammy ..wow ..well said !!!!!

it is a slippery slope, I actually had to leave my SO because he was becoming very demanding, his ideal was that I work full time and take care of all the home stuff too, cooking cleaning dishes and I just simply don't have the bandwidth, his idea of a day off is to go to Costco and walk every aisle, then go do the grocery store and walk every aisle and then not really understand why I am exhausted and that maybe that wasn't how I wanted or needed to spend my day off, particularly when I spent the other one doing house chores :P call me selfish but I want one fun relaxing day per week!!! when he started engaging in some serious behavior modification stuff and I couldn't get him to stop (he would stop speaking to me until he figured I was sufficiently punished and would do what he wanted) I finally left, it was then I realized how badly he as stressing me out, I love him but seriously doubt I can ever live with him. He still doesn't really understand the effect he was having on my health. So if you have a hubby that can even partially understand and deal be thankful, but don't be afraid to stand up for yourself and really care for your health....

Ole Blue's 2 cents

It takes special people to deal with this "stuff" as you all are - very special and if we have or can find someone that cares for us and our plight, we are blessed.

The world is very busy being what it is - we and our problems do not appear to be a ripple on the pond from my view point so I try to blend in as best I can

Peace
Bluedogs2

Blue I really admire how you strive for balance, I crave balance but have a hard time getting there...work in progress :)