Does your spouse understand what you go thru with RA?
I have decided since we have a few people who have/had a spouse that does not seem to understand how life with RA is like. That there should be a special thread made just for that.
We can all provide kinda like online counciling to each other. I know we have some that have spouses that understand or understand to a point. So... I was thinking maybe those people can provide or reinforce the hope that having a spouse that does not understand might come around one day.
anyone got anything else to add to what this thread should help with?
This would be nice. Good suggestion Joonie.
Great idea, Joonie. I think there is a need for it big time. I also think that it's a good idea. We can ALL learn from what others have gone through..Well, I will start it.
My hubby did not understand my J/RA when we first got married, grant it I was not as bad as I am now. He use to just think I was lazy and slept all day. Which I did sleep alot. But I also had depression from after having our daughter, that was not treated until I went to get my J/RA treated.
I was slowly going down hill after having our daughter. I just chose not to accept it, then when I got to the point of not being able to take the pain & stiffness I went to a RD. Hubby went with me for my first visit, but he did not really care at that point.
My hubby had been with me to just about every RD appt when I was getting worse. He still did not care. He still saw me as being lazy. And it did not help that my 2nd RD made it out that I was to be able to do more than what I was already doing.
It was not until I was preggo with son, 7 years after I started going down hill, that he kinda realized I was not doing well before I was preggo with son. I was able to do more, because I was in preggo remission. And then after having our son, I REALLY went down hill.
Hubby got to see first hand how I went from being able to tend to our son one day and then the next struggling to get outta bed to walk to the bathroom only steps away. He FINALLY realized I was not doing good. And when I was put on meds that cost soo much, he realized I was bad off.
Of course, now he still calls me lazy, as when I have some days where I am doing ok and get around ok, to where to him I am "normal". So, when he calls me lazy I will do something and then when I swell or something hurts I bring it to his attention. He just does not understand that I know what my body is capable of and when I can do things. So, when I do something when I know I will pay for it, after he calls me lazy. I will show him the result, which is usually something swelled. Then he will feel bad and tell me to stop and go lay down.
I have this new rule with him. I do not do any house work, unless I feel like I can do it, while I am not on anything more than prednisone.
So, when he complains, I just say and what meds have I been on lately? And if he says "prednisone." I just say "Enough said."
But I do have times when I breakdown crying and yell at him and tell him he knows when I am on good meds I do, do what I need to do. And he knows it. When I feel good, I do more, when I am not doing good, I just do what I feel I can do. Which is tend to our son.
Shelley & Joonie your stories are so sad. I'm at the beginning of this disease and can only pray that hubby continues to be as caring and understanding as he is now. The only time hubby gets cross is when I'm in pain and that's his reaction because he cant take it for me.
We've always had an understanding that when I'm down/ill and I need to vent all I want him to do is listen and then give me a hug. I dont want him to give me answers/replies I just want a 'love' and that's what I get. My son takes his dad's example so they both chip in when things are rough. I'm very stubourn though, they both know that when I ask for help I'm really at the end of my tether.
Here's hoping that the sun will shine for you both eventually.
Shelly - when I met hubby in high school, I was in teenage remission. But I was starting to come out of remission a year after dating. I had to go on Lodine XL to keep the stiffness and pain at bay.
How would my mom convience my hubby that I was not lazy, when she could not even convience my siblings? My mom use to have to dress me in the mornings until I was about 7. My siblings thought I was just lazy and did not want to go to school, but actually I had morning stiffness. I had such bad morning stiffness to that if I went to sleep in the fetal position, I would be stuck like that and my mom would have to pry me outta that position. Eventually I had to wear half casts to sleep to keep me from going to sleep in any other position other than straight legged. Oh and they also thought, that the reason my mom had to dress me in the mornings for school, was because I sat up too late the night before. Well... it is kinda hard to go to sleep with your knees in horrid pain, crying while waiting for either to tire myself out crying or for the baby asprin to kick in.
My oldest sister now, she tries to be considerate of me. She has seen me on bad days, and everything, PLUS my mom talks to her about my J/RA more than I do. So, she is more understanding now. But I still have 2 other siblings that have degenerative arthritis, and they think they know what I go thru. And here all they take is celebrex at most and they say I know what you are talking about. They know jack sh*t! But I just give them my sarcastic smile w/a blank stare and nod my head "yes". But never reply. Those 2 will never understand. They were the ones who thought our mom babied me too much. Well hate to break it to them, but I do not live with our sister and not have a job because I do not want one. I am not always in contact with my siblings, and they all live 10 mins away. Heck I can run into them in wal-mart, that is how close we live, but rarely see any of them. SO... I just keep it that way. Might as well.
Oh and my other sister told hubby while we were dating that I was a spoiled brat and all kinds of crap. So... like family is any help. *rolls eyes*
Oowww...a SHRINK! I might need to visit one of those
My hubby has memory problems, but I think his is selective memory. Or because he does not eat fruits or veggies. He was a psychologist, not a psychiatrist, but the husband took great delight in calling him a "shrink".
To me they are all the same
I guess one you go to when you are not crazy, just when your other half is driving you crazy.
And the other one tells you, you are a nut and gives ya some meds.
Is that the difference?So is someone who used to be in this situation allowed to put her two cents worth in now and then?
[QUOTE=Cordelia]So is someone who used to be in this situation allowed to put her two cents worth in now and then?
[/QUOTE] I feel like I'm looking in the mirror lol
Much Love...... I am sorry Angy. I wish that had not of happened to you. My hubby use to be very self-centered, but he has come a long way within almost 3 years. He takes me into consideration most times, but he does still do things that just make me wonder "Did he forget?" I have told hubby if he leaves me, he is taking the kids and can send them back to me when they are old enough to take care of themselves. Because I cannot support them or do the things they need done by myself. Even if I tried really hard, I would still fall short. I know he told me no they would be all mine, but I know he would not do that to his kids and he would take them. Joonie, I am sorry you are having such trouble.... We have enough trouble with this crap. As for the counseling he ( my hubby) would not go... He considered hisself this manly man... Whatever that means
Unfortunately I had to quit working and I finally got my disability starting this month. My finances will be tight but I can support my family and all my kids are old enough to do for themselves. Thankfully. nvm Yeah... Darrel. My hubby use to belittle me without even knowing it. I just shrugged it off most times. It is not bad belittles, but it is stuff I can shrug off for awhile and let it build up then I breakdown and shove it all back in his face. Half the time when I bring something that hurt my feelings up a couple of weeks later, he does not even know what I am talking about. And I have realized this. That he just says stuff for that moment in time, and then he moves on and forgets about what he has said to me. But I sure do not forget. I just add it to my "why I am worthless" list... and then use his words to tell him why I feel the way I do about how I am progressing. But it has been a while since he has said anything that belittles me to that point anymore. The most I get now, is I am being lazy. *rolls eyes* Yeah... I like to see him do stuff with swelled up, non-bending body parts and pain. He would be in the bed for years!
Thanks for sharing... Sometimes I wish I had a tape recorder and play it back so they can hear what they really sound like. SHELLY YES YOU ARE GETTING THERE NEXT STEP LIGHTER AND SOME GAS. HA
ARE YOU SURE YOU PUT THE RIGHT NAME ON THE APPLICATION. HAVE A NICE EVENING. AMEN, ANGIE THEY WOULD HANG THEIR HEAD IN SHAME IF THEY COULD HEAR THEIR SELVES. GOOD IDEA.
I can relate about not being the same with the kids... I have 4 and sometimes I have to miss games, activities at school. etc. It stinks. I would always get this eye from my ex. like stop being lazy......
I try not to listen to him making his comments but it does a number on your self esteem. Thanks darrel for your post. For the four months that my RA was new and unmanaged, I was down and pretty much useless. During that time, my husband had to do not only all his regular stuff, but pretty much all my stuff too. It must have been very hard on him, but he never complained. Had he chosen to, and I'm sure he had plenty to complain about, I don't think I could have taken it. It was so hard for me to do nothing, to be in such pain and in my drugged up haze. The guilt I put on myself was almost too much to bear. Had he piled it on as well, it would have broken me. I feel so much for you guys. People don't understand what it's like to be in a situation where you go from being productive and useful, to being totally dependent for even simple things. Or to be feeling the pain and just run down and ragged, but look like your good to go. After reading the problems some of you are dealing with, and the hurt and frustration, I am not even going to say my complaint. Seems so petty now. COME ON LINC I WANT TO HEAR IT TO THAT'S NOT FAIR YOU BACKING OFF.
Hubby and I have always dealt really well but I'm like JSNM, even 1% of contadictions about my health is hurtful. Like you sleep too much, or you need to get out of the house more, or it's not going to hurt you to go to church for an hour, or wal-mart for me, or whats for dinner, is my shirt ironed, you need to walk everyday
Well, I was at one time making it a point to point out to hubby a little while after he came home from work, to tell what all bothered me. SO, he would know exactly what was wrong with me, but after a while I just felt that he really did not take in what I told him. SO now... I just show him. He know if I play around with him like play punch him in the arm or pinch him, I feel better. Or if I am just dying to go somewhere as soon as he comes in the door from work I am feeling better. But I have not really had any of those days since last Oct, the beginning of the bladder infections and having to go off Humira so much. I try to do, but I usually overdo and pay for it for a few days. Hubby just does not understand that. That is takes a lot outta me to do stuff, so my way to recoup is to sleep. Just like he was complaining last night about son's messed sleeping schedule. Told me it was my fault because I let him sleep until noon. No, not my fault, I was sick with mono and NEEDED to sleep. That is all my body wanted to do. You know it is bad when I go to a dr and complain of sleeping so much, as I LOVE to sleep. But even sleeping as much as I did had me worried, 14 hours at a time. So, I told hubby it was not my fault, and that son put himself on that schedule. I mean I have woke him up early one saturday the kid only had 8 hours sleep, and then he was up 14 hours without a nap! Even I had to take a nap! It is just something son, is doing on his own. I try to make him take a nap, but the kid is just to much for me to handle some days. I am tired of everything being MY FAULT. But I cannot change it, it is my fault if I do, and if I do not do. It really is a no win situation. Jaz, I love you, truely I do. YOu always just make me laugh...you are so down to earth about everything. I so admire that, and would love to be more like that. I have some of those complaints too, but my dad used to do things like that too. I KNOW THIS IS GOING TO SOUND CRUEL BUT DON'T WISH YOU COULD LET YOUR SPOUSE HAVE THIS DISEASE JUST FOR 10 MINUTES DURING A FLARE AND THEN TAKE AWAY FROM THEM. THEY WOULD SHOW US RESPECT FOR THE REST OF OUR LIVES.
[QUOTE=darrel] I KNOW THIS IS GOING TO SOUND CRUEL BUT DON'T WISH YOU COULD LET YOUR SPOUSE HAVE THIS DISEASE JUST FOR 10 MINUTES DURING A FLARE AND THEN TAKE AWAY FROM THEM. THEY WOULD SHOW US RESPECT FOR THE REST OF OUR LIVES.
Sorry Darrel but thats second on my wish list. My first wish is that all men should have to go through one pregnancy, labor, and delivery!
I remember how I felt when my hubby had his severe back problems and surgery. He was really scared and self-absorbed, and the only thing he could talk about was himself. It was a constant report of what hurts now, or what's he has noticed about his body, or a depressed comment all the time. I understood it, and certainly sympathized with his pain, but it is very hard to be a spouse living with that day in and day out. That is why I am determined not to allow ARTHUR to be a third person in my marriage. I let him speak out now and then, but daggone it, he ain't taking over. LOL Karen and Jas
Ok...so who's ARTHUR???
Arthur-itis Shelly
Ok, I'm very dense tonight...too many steriod running through my system oh and the vicodin. HA HA MOANA, IT'S FUNNY YOU MENTIONED THAT BECAUSE THAT WAS A TOPIC ON ANOTHER MESSAGE BOARD ABOUT MONTH AGO. I KNOW EVERYBODY'S PAIN LEVEL IS DIFFERENT BUT THE ONE THING IN COMMON ALL OF THE WOMEN SAID WAS THERE WAS NO COMPARISON IN PAIN THEY WOULD TAKE LABOR OVER A FLARE ANY DAY THEY EVEN JOKED ABOUT NOT HAVING TO HAVE PAIN MEDS FOR LABOR OR DELIVERY BECAUSE THEY ARE USE TO THE RA PAIN. BEFORE YOU START SCREAMING AT ME I AM JUST REPEATING WHAT A BUNCH OF WOMEN SAID NOT ME. JUST REPLYING TO YOU FOR PICKING ON ME CAUSE I CAN'T DO THE LABOR OR DELIVERY THING.
WAY NO ONE WILL EVER KNOW THE PAIN OF RA SO I AM NOT MAKING ANY TYPE OF STATEMENT OR JUDGEMENT. THERE I THINK I COVERED MYSELF I HOPE.
You did fine Darrel, and at least with labor you know that you will be out of pain and it will be over. With this it is anyone's guess and the pain that this has effects everything. The pain of labor is centered in your belly and other things. Those things are not relavant for walking and being a productive human being. And ya, I got med with both of the kids, but I also got pittosin to speed up the labor for my daughter. That is a long story too, and not much support then too. (I went into labor with her at 27 weeks.) Yeah Darrel at least with labor and delivery you have something to look forward to. Not like ole Arthur
JOONIE'S THREAD BUT I WOULD LIKE TO KNOW THAT IS SO EARLY. I HOPE SHE IS HEALTHY POOR LITTLE GIRL. As usual Cordy you said it best!Glad I could help, Moana, by writing your words and feelings.
OK..I didn't come back to this thread till just this morning, but I'll tell you the thing that just makes me really mad. First, let me say that I don't complain much about my daily soreness. Most days I don't bring it up at all, I just don't like to. But sometimes when something is worse than usual, like my elbows really hurt yesterday, I'll say it. I don't mean whine and go on and on, just something like, boy, my elbows are really bothering me today. Well, it doesn't matter what the thing is, my husband ALWAYS has it worse. When I said that about my elbows, he goes, oh, my elbows are killing me. I really worked hard today. Or if I'm tired, he's just physically exhausted, can barely go on. If my knees ache, he reminds me of how bad his knee is, you know, he did have surgery on it, like 30 years ago when he was a teenager. My toes are bad? Not as bad as poor him, he's been on his feet all day long. Or the other day, after my plans were made for my trip down south to see my son, I said that I hope I don't falre, that would really suck. I've been flaring like, every three weeks for the last 2 months. Why can't he just say something, like yeah, that would suck, or don't worry, it'll be ok.?? He just said you won't, stop being negative. And he said it really short, like I'm just a big pain in the a$$. The result of all this...I just can't talk about this at all with my own husband. It seems like you should be able to do that. Oh, we were here grieving with you. My husband actually told me that he thinks I read this message board too much. That it's giving me ideas about other illnesses. I told him "Do you think I WANT another thing to go wrong with my body? Isn't enough of it broken already?!!" You've got to be kidding me. He's very much the "don't whine or complain" person. He says I don't talk to him, I don't tell him how I'm feeling. Then when I finally do, I can see his eyes glaze over and I know he's really not listening. He makes me feel like I'm complaining when I talk to him. You know? We should be able to talk to our spouses about anything but many of us can't. Every once in a while he says that I handle my pain real well and that he wouldn't do half as good if he had all the things wrong with him that I do. This message board is such a great outlet. And I have two sisters with health problems and we vent on each other. Sometimes I'm so scared about my future. I honestly don't know if my marriage will make it. We've become distant in the last few years and I don't know if he can handle what's happening to me, or how much longer I can be with someone who doesn't love me more than anything. I am still trying to recover from the 22-year marriage to the first type, and enjoy my 8-year marriage to a normal man. Ex: "You clog up the drains when your hair falls out". ? Ex: "Your skin is the toughess skin I have ever felt". ? Ex: "You nap too much". I read once that marriage is a long conversation, and if women had the first bay, and men had the second baby, they would have no more babies.
this is a time that I'm glad to be single. I think it would be so stressful and so depressing and heartbreaking to love someone who doesn't understand my illness and who thinks I'm faking my pain. It would make it impossible to remain in a relationship with someone that I couldn't talk to about my pain, fears and troubles. I'm lonely sometimes, but at least I don't have to put up with some man's sh*t about whether I'm really sick or not. Hang in there girls. I wish I could say something that made you feel better. Phats Overall, my husband is a good man. I won't demand perfection from him because then he might demand it from me, and perfection is something I can't deliver
So here's my story---Before I was sick at all, we watched my MIL go through "something." Honestly...I don't know what EXACTLY she has. I think she has MS, but not sure what else-if anything. I'm just not sure, you can never get a straight answer out of her. I just know she's on alot of meds and we really think she loses track of what she takes, and then takes too much. But it was very frustrating for us to watch her husband try and and deal with her. Sleeping all day...up all night- not cleaning, cooking etc. But we were pretty ignorant of what she was going through. HOWEVER.....now that I have a chronic illness- "I" have a whole new perspective. I feel awful for thinking my mother in law was just "looney." I really would like to sit down and talk to her to find out exactly what she has. I know my husband still doesn't understand because he's not personally going through it. So Darrel- when you say "wouldn't you like your spouse to have this disease for 10 mins." YES- I would--not because we're cruel, but ONLY because then maybe they'd understand. I even said that to my husband before. Except I said, " I wish you could just have this for a week, so you knew what I'm feeling. I'm not making it up as an excuse to not have sex with you!" For him---he feels rejection- and I SWEAR- If I could MAKE MYSELF WANT SEX MORE I WOULD! I'd say 95% of our fighting has to do with sex.....frustrating! Anyway--for the "most" part, he doesn't belittle me, or call me names because of my RA. He has told me, " Tell me what you need me to do"...and then he'll do it....for a while. After reading some of your stories, I really feel pretty lucky. I totally agree with whoever said they just want to "fix us" and they can't.. I've tried to imagine if it were my husband that had this---how would I react? I'd like to think I'd be supportive- but it really would be hard to have a spouse who needed to sleep alot, or who never wanted to be intimate, etc. I actually still work about 45 hours a week and take care of our 4 kids--but there's certainly days where I just can't do it all. I do feel SO thankful that my RA was caught early and I'm doing pretty good. I don't know how my husband would react if I couldn't work anymore. He's always been the type who didn't want the "barefoot and pregnant" stay at home wife..."If I have to work, you have to work." (like being a stay at home mom isn't work?! I think it's harder work!
He did tick me off once....my daughter's band was going to be performing at an amusement park about 2.5 hours away from us and I really really wanted to go and take all of my kids. My husband didn't want me to go by myself. He was scheduled to work, but I said I was going anyway---"I CAN DO IT!" Well, he ended up taking the day off----and I ate my words over and over again. There is NO WAY IN HE!! I could have done it on my own. It really was an awesome day---walked around the park for 6 hours....went on several rides with my 2 boys and my 1yr old...listened to my daughter perform. But if he wasn't there to drive us home---I think I really would have been in trouble. I was in so much pain. I told him SEVERAL times..he was right, and I was SO thankful he went with us.
Lori- My husband has asked my parents several times if there's a warranty or a return policy on me! LOL...or "I'm trading you in on a new model." But he says it all jokingly.
Sorry I wrote a book here..... I've read the whole thread and like Phats I don't have much to add but for a different reason. I'm married to a very understanding and emphatic man. From day one he's been supportive and has helped me. This was a second marriage for both of us and I was 50 and he was 52 when we married. I was 55 when I was diagnosed with a severe onset of RA. Fortunately, we were beyond the stresses of small children and didn't have any financial burdens. Who knows maybe it would have been different if we had been younger, but I do know, old or young you have to have respect for one another. Respect doesn't come automatically with the marriage vows, it has to be earned. You can't earn one another's respect by not treating one another with kindness. If he has to clean I don't complain that it's not done to my standards. Hell, any standard is better than mine when I'm flaring! I don't care what he cooks as long as it's not Spam. Who cares if he washes the jeans and the towels together. Eventually it all gets sorted and back to normal until the next flare, and then the adventure begins again. He has supported me financially, mentally, and physically through out this whole process and no one is happier than he is that he has his golfing partner back. Not one time has he complained. I'm blessed and I know it. I don't have any sage words of advice for any of you. My heart breaks and my brain tells me that go ahead and offer advice, but I know that for the most part you've tried all the tricks and advice that's been given you. It really is up to the other person. Many times chronic illness groups are a help or even counseling. If you have to go alone, then go. Do it for yourself. Lindy Hey guys!!! I am just reading everyones posts for the day and realizing that I AM NOT THE ONLY ONE who has had these problems with their husbands. I think you are truly blessed if you have a hubby that truly tries to understand your illness. But unfortunately I ended up with one who didn't. Its been 6 months since he left, of course I have to go on, I have 4 kids!!! Joonie, thanks for starting this thread, it has helped me so much to vent and I am so sorry that some of you have the same problem as I do. I do think chronic illness is hard on your spouse by no means is it easy. But I can't think but if he had this I would NEVER treat him this way. I truly agree that he revealed his true self when he left. I am healing everyday from my marriage ending and will continue to heal. My kids are the most important thing to me, and I don't want them to see how hurt I really am. Thanks to all you guys for your posts..... Chronic illness is hard on a marriage, regardless of who in the family has the illness. My daughter has had her sickest days as side effects from meds we have tried, but my husband would still insist we not change any plans we had made. Diarrhea all day? 'She looks fine, we're going out to dinner.' Pale and exhausted after horrifying experiences when they couldn't get a vein for labs (attempting both arms, hands, feet)? 'She'll be okay. I told Dad we'd be there at six.' And so on.... He didn't even believe me, that there was something wrong with her....until her preschool teachers started saying it, too. Me and hubby are new to this disease. I hate him asking how I am all the time so we agreed that he could ask me how I'm feeling on a scale of 1 - 10. I dont have to tell him where I'm hurting just give him a number. This works for us because I'm finding it hard to come to terms with the whole thing without feeling I need to be strong for hubby to (he knows this, we've talked). The scale thing has spread to the whole family too, they all ring and ask for a number, this is quite amusing and loving I think. Hubby knows when the number is high because I go quiet, and I'm not a quiet person by nature. I cant imagine how it must feel to be told you're lazy, you're napping too much etc etc, I'm horrified that the general theme seems to be partners/husband/wives that dont/cant/wont be supportive. Cordy is right... there's a lot of selfish people out there.
I've just told hubby about this thread he says that you should all tell respective partners etc that the 'fairy' has gone on holiday. Standing joke in our house that the washing fairy does the washing, cleaning fairy does the cleaning, sock fairy puts the socks in the drawer.... you get the drift.
At least the 'family' on the board are always here for us all. Sarah, How lucky you are. You are so blessed to have your hubby!!!!I love the scale!!!! I am so sorry that so many of you have to live with the cruelty of people who should be your strongest supporters. I do know how you feel because my first husband was very self centered and controlling. It was many years ago, but he had me convinced that I was worthless and I was lucky to have him because no one else would want me. He was the first boyfriend I ever had, as a teenager and we married when I turned 18. I had 2 wonderful girls with him and we stayed together until I was 30. By the time we seperated I had no sense of self-worth whatsoever. I have been with my current (and last) husband now, for 28 years and he is the most wonderful man in the world. All the more special, because I didn't know men like him existed. If he wakes up a little bit at night, and I'm awake, he'll reach over and pat me or hug me and say "I'm so lucky to have you". That is true love! and you all deserve to have that kind of love! He goes to all my appointments with me, and for all procedures and tests. We are doing this together, and we would do it together if it was him that was sick instead of me. When he had his knees replaced, I was able to do what needed to be done to help him get well. Not because I'm so strong, but because he needed me. And he is there for me every day, when I need him. I am so angry at the husbands (or wives) who are too involved in themselves to be a partner to their wives (or husbands). A marriage is a partnership of 2 people who love each other so much that they vow to be there no matter what happens.They should be able to grow old together, loving each other as much or more than they did from the first day. My husband is always looking out for anything new about my health issues, anything that might help me or bring me some relief from pain. He talks to my doctors asking for any new treatments. And he rejoices with me if I have a day when I feel good. He has cried with me when things seem hopeless and also when they are tears of joy if we get any encouraging news I pray that you will all have this kind of relationship some day. Hugs to all, Nini Ok, so I have a few things to add. I'm not going to add my whole story cause honestly I dont want to go there but dont take it personally. I will share it on PM but not here in the open. When I was first diagnosed up untill probably the past year, my husband didn't "get" what was going on with me. I am a VERY stubborn person (Irish, Czeckloslovakian, and Bohemian (is that a nationalality?)) so I had a VERY hard time asking for help. So in a sense I cannot blame him for not "getting" it since I wasn't exactly allowing him the chance. When it comes down to it, he has been there to support me in whatever I choose to do, whether it had to do w/ working, being a stay at home mom, going back to "school", my meds etc...But it wasn't until our marriage almost ended did I allow him to help me. I HATE asking for help. I have always been very independent, and I've had this "I can do anything" attitude. Well this disease put me in check so to speak. While I'm not going to let it rule me, I do however have to realize that I cannot go 1,000 mph anymore. I can do stuff, just not at the pace that I am used to. I also had to realize that a marriage is a give and take from BOTH parties, not just him and not just me. N&T: I really have to disagree that sex is the only way a man can express his feelings. I think that if you sit down and talk to them youd be surpised how much they have to say. Maybe not all of the time and maybe not in the way us women do but they can express their feelings other then sex. Not only do men want Attention, Affirmation, and Affections but females also want those things. If together you give those three to each other then as individuals you'll receive the most important, which is respect. It doesn't matter if it's the female or male, we all want the same things from our spouse. I don't agree with Dr. Laura that you should have sex if you don't feel like it. That's such an archaic statement. I wouldn't expect my husband to have sex with me if he didn't feel like it and I know he would never expect me to have sex if I didn't feel like it. To me that's more of a power hold than passion. And don't tell me that they can't tell that you don't have your heart in the act. They can tell. They're not stupid and I'm sorry but I'm not that good of an actress. I do give my husband attention, affirmation, and affection because I want to and in return I get the same. Hi MaryB, I think we have been married to brothers...BOTH TIMES!
My daughter used to ask me about my marriage to my current husband, her stepfather who has raised her since she was 7 years old. She said she didn't want to get married, til she found someone with whom she could have the same kind of marriage I have. I was so touched to hear her say that. By the way, she didn't marry til she was 31. But her husband is a treasure. I told both my daughters that to be like we are, both partners must put the other's happiness, at least equal to, their own. I am happy to be with my husband, where ever we are and what ever we are doing. He feels the same. When we are planning something or a trip, we each think about what things the other would really like to do, and try to make it happen. I didn't take the first helicopter tour of the Hawaiian Islands with my husband, because I was terrified. He understood and made sure I had something to do that I would enjoy. I took a garden tour of the hotel and took pictures of the beautiful plant life in the islands. He enjoyed it so much and was able to see many things you can't see any other way. Years later, the next time he did the trip, I went, too and it was spectacular! He was so happy to share that with me. At this point, he has taken up golf and is quite good at it and loves the game. I will never be able to golf, because of my health, but I'm so glad he has something fun and healthy to do. But it never interferes with anything we do together. I told the girls, you just try to give that person a full happy life with you, if you have someone who does the same. It they don't do the same, basically, you can become a doormat! I want all my friends here to have people who appreciate them and help them through the rough spots of chronic illness. Sorry, I went on too long once again
Good night to all, Sleep well. Hugs, Nini On the sex issue, I believe there are times when we don't quite feel like it, but might end up enjoying it anyway...kind of like smiling when you're having a bad day and you'll start to feel better. I think there are other times when we don't feel up to it, and no one should do that just because of their partners expectations. I do think sex and physical affection are very important to most people's relationships and we should try to find ways to keep it going, even if that doesn't mean full-on intercourse. [QUOTE=maryblooms]Hello again, Yeah... I am thinking hubby is one of those people this book would not work on. He is self-centered, but not as much as before I got really bad. And for him sex is his only way of communitcation with me, and sometimes he does not even communicate that with tact. Or if it is not sex the way he communicates with him, it is thru annoying me. He does it on purpose, and he knows just how to push my buttons. I think the way my hubby shows affection is by playing with my ear. He has worn the cartliage in it to being soft and flimsy. My ear bends really easily compared to the other one. Kissing is not much of a thing unless I ask for one. Yeah, I think my hubby is emotionally distant. But that is the way he was brought up. The only emotion he can show REALLY GOOD is anger, then he will hold on to what pissed him off for a while. He is kinda like a woman on that respect. Ok why is it when I try to be nicer to hubby and somewhat to the effect of the 3 A's... that he thinks I am up to something or want something? We have always been like we are now. He sees me as one of the "guys". He will come home from work and treat me like one of the guys from work. It was ok in the beginning, but the worse I got the more it offended me. And the I told him how it hurt my feelings when I was not feeling well and he would "ignore" me and my problems. Then he stopped treating me like one of them. I mean do you know what it is like to wait 8 hours for your husband to come home from work to relieve you of watching a newborn and to not be able to tend to yourself or a newborn very well, and most of his talking is thru flipping you the bird? Yeah... he went thru a period where if I even said "How was your day?" I would get the bird. See, at work that is how they "talked" flipping each other bird for no apparent reason or flip a bird to each other for an answer to a question. It DROVE me CRAZY! Here I was hurting and in pain and could not even tend to myself, and he was flipping me the bird because to him I am one of the "guys". I finally got fed up with it and told him about it, but ya know how it goes, it always turns into an arguement. But he slowly stopped flipping me the bird. It is just weird how a guys mind works, even when they have a juvenile mentality. But his mentality is starting to grow up, as we do not fight as much, and he is way less self-centered than he use to be. Only took 8 years.
Innerglow...I agree with what you said about sometimes not wanting sex, but once you get going, it's very enjoyable and for me I actually end up feeling better. I never like saying no to my husband when he's suggesting sex. He would never ask if he knew I was feeling crappy...but when I don't feel like it because I'm tired and he's saying or doing things that I know means he wants to...I certainly will go ahead and always end up feeling glad I did. I always let my husband know that he's appreciated in every way for all the things he does for me. And he will always tell me how much he appreciates the things I do for us as a family and the things I do just for him. My husband thanks me after every meal I make for him. I laughed one day and told him he really didn't need to thank me, but he still insists on thanking me. Nini...I kinda had the same experience with my daughter who is now 24. She told me a while back that from what she sees with my relationship to my husband (her step father for 8 years now) it makes it hard to find someone that she wants to be in a relationship with because none seem to measure up to her step father who she's seen treat her mother so well. I'm glad that she sees how well he treats me so she won't settle for anything less than what she deserves. I think she's met him though...so I'm happy about that
My first marriage didn't end from anything to do with my RA. Just a matter of marrying too young and the complications that can come from that. Sure, but there are times I am not. And I am sure there are times when he is not either. It really is not as bad as it sounds. I can tell you how I know this... When I first got married I was calling my mom 5-15+ times a day just to vent about how hubby was or because we argued. Now... I am down to 2-3 a week of calling her about our problems. So, somethings have changed and some things I have decided he was not going to change because that is the way he is and the way he was brought up. He is a good husband... he works everyday, he plays with the kids, he lets me have anything I want if we have the money, he does help out with house work, and he does kinda think of me and how it will effect me for certain things. Now, if you would have asked me that about 3-4 years ago... I would have been like he is an asshole, and just as lazy as he thinks I am. Marriage is a continous job, you have to work on it. I have learned that much. You know how I give up on stuff? Well, I have yet to give up on my marriage yet, as I can see it does change, as we get older and a little more wiser. It is truly a give & take kinda thing. Even though in my mind I give more than I receive... but I am sure he sees it as that way too. I have yet to give up on it, because I have my mom to help me thru it and to give me her take on it all and give examples of her marriages to me and then I try to apply it
By all means!
He eats the LAST ice cream bar
He takes too long in the bathroom
He farts in the car w/the windows rolled up and insists it's not "that bad"
My dad thinks he walks on water and can do no wrong... dad ALWAYS takes my husband's side. I used to be Daddy's little girl... now I'm just the wife of his son-in-law
I also think it is obvious when someone is not.
Yes, darl, you should
be able to talk about all this with your own husband. I am so sorry you
can't, sweetie, especially when you hardly ever complain at all.
Yeah, well I must admit it felt good to get it off my chest.Good, I'm glad. You are not exactly the biggest complainer around, Link. You probably need to get things off your chest every now and then.
Wow! Where were all these people when I told my story!! I thought I was just sounding like a broken record and had no idea alot of you are going through the same problem.
I haven't read all of these post, but my feelings are that men are brought up not to whine, complain in any way and not to cry and then some of them go into the military and get a double dose of the same thing. So if they come away from any of that, then they are real lucky or they have had counseling. They really do not know how to express their feelings unless they want sex. LOL Not funny, I know but dammit it's true.
Ladies, please listen to Cordy!!
PS: I am not trying to find excuses for the men, actually I feel sorry for them. It must feel terrible to hold everything in and try to be macho when you want to cry.
I am so sorry for all the heart-breaking experiences on here. RA is a very formidable enemy and takes many casualties.
I became sick with fibro just before marrying my first husband. He understood it all on an intellectual level, but wasn't very good at dealing with it. It isn't the reason our marriage ended, but it certainly didn't help matters. When I met my current (second) husband, I was already sick and so he knew more of what he was getting into. But then the RA came and upped the ante.
My hubby is for the most part very supportive. He doesn't have a good understanding of what's going on, and doesn't try all that hard to understand the medical details, but he does have lots of sympathy and tries to help. He'll go to my doctor appts, if I ask him, but says he doesn't know what he can do by going. Although I work full time and am the bigger bread-winner, he works two part-time jobs, plus does all the shopping, cooking and cleaning. It's not always up to my standards, and I'm frustrated with what I can't do for myself, but I am very, very grateful. He also makes me feel very special, and reminds me that everyone either has problems to deal with (medical or otherwise) or else will likely develop them...none of us are perfect.
What's very hard for me is when we fight (about anything) because he gets so hurt and then wants nothing to do with me, for a couple of hours or a couple of days, no matter what shape I'm in or how badly I need his help. But we're working on keeping the compassion going even when we're hurt.
Overall, I have it very good, and although I'm not sure how long I'll be able to work full-time, we don't have any children in the house and finances are alright for now.
Anyway, I know we've all tried different things to help, and here are my 2 cents to offer, FWIW:
Let them know specifically what they can do to help, and let them know how much it is helping, that they are making a difference.
Explain what you want when you vent/whine/complain...is it just acknowledgement or something more? Let them know you don't expect them to fix it.
Be specific about how you're feeling, because if you're sick every day, they don't realize that some days are worse than others. Explaining what you can and can't do is sometimes more helpful than how you feel.
Talk about your spouse's feelings of helplessness, grief, frustration, etc....they need to be acknowledged too.
Try to keep affectionate, especially if sex is a challenge. Holding hands (gently), kissing, cuddling is important to maintain that physical connection.
Find activities you can enjoy together, even if it's as low-energy as watching a movie and making popcorn.
I highly recommend counselling, single or couple, but a less threatening, less expensive alternative is to get a good book and read it, together if possible...I recommend Beyond Chaos: One Man's Journey Alongside his Chronically Ill Wife by Gregg Piburn, and Getting the Love You Want by Harville Hendrix (currently reading that one with my hubby and discussing it after each chapter).
So I'm sending out some positive vibes for us all, to renew (or initiate) the compassion our spouses feel for us, and the compassion we feel for them and what they have to deal with.
I am like Nini now, but my first marriage horrible. He wouldn't have stuck around a week if I couldn't work, cook, clean and take care of the kids. I left anyway due to (among much more serious issues) selfishness. I used to wonder then "If he treats me like this when we just got married, how will he treat me when I am not as pretty, fun and energetic.
Because of my first experience in marriage, I treated my second attempt at finding a mate like a job interview. What would you do in this instance? How do you handle finances? What type of father are you?
He was aware of my problems with anxiety and major depressive disorders before we got married. We have been married for 11 years and he has always been there for me. He never doubted my RA. He had been there for 5 joint surgeries already. I use 1-10 scale too. After all he is an engineer and gets that
Oh Nini...sigh. I just about cried when I read your post. How wonderful that you found each other. It sounds like a dream.After rereading my post I am going to go give my husband a big kiss and tell him how much I appreciate him.
I will probably be shot down for this but after I read "the proper care and feeding of husbands" by Dr. Laura. I don't agree with everything she says, but she is "spot on" with this book.
After I read the book I made sure that my hubby had all the adoration, attention and appreciation I could give him. Sex isn't the only way to communicate but it plays a LARGE part of it.
This certainly wouldn't work for everyman. You wouldn't use it on an abuser, addict or a completely self centered person. It would not have worked at all on my first husband. But the men I know who wives have read it (some wives throw the book against the wall) and apply it are very happy. In turn they make their wives happy and chances are when mom and dad are happy together the home is stable for the children.
Just my 2cents
Mary, tell us a little bit about Dr. Laura's book. Perhaps we all can learn something.
Ok, I will. But I feel that I might offend some people. Keep in mind that I am not a '50's housewife. I work full time as a teacher, own my own business and make my own decisions.
The book is based on the idea (not original) that men and women are different. Men want certain things out of life and women want others.
Dr. Laura says, “Men are borne of women and spend the rest of their
lives yearning for a woman’s acceptance and approval. . . . Men
admittedly are putty in the hands of a woman they love. Give him direct
communication, respect, appreciation, food and good lovin’, and he’ll
do just about anything you wish—foolish or not.”
Women tend to communicate by talking, a lot. We are different from men. Most men hear or say something and are done with it. Women will continue to talk more about it.
Women are more intuitive to others feelings. They tend to know what others need or want. Most men aren't. They prefer to told, not to have to guess.
Women de-stress by venting. When we vent we might just be blowing off steam, men tend to want to go in and fix things.
Most men say what they think. We women will take a statement or a look and overanalyze it.
She mentions three A's that men are looking for from their wives. Attention, affections and affirmation. Men want respect, paying attention to what they are doing. They want appreciation for what they are doing, even if it is their job to do it. Men dislike nagging and controlling behaviors. Men want support from their wives. I personally try to never say anything negative about my husband to others. I tease him sometimes but he told me he doesn't mind that.
I know it isn't everything but men like the three A's expressed in sex too. Alot!
I forgot to add the old saying that shows how much power women have "When mama ain't happy, ain't NOBODY happy"
Mary, first of all I admire everything you are doing and I really do not know how you do it. Teaching, business, etc.
I agree with Dr. Laura because I have done that and it works. A little difficult with any disease, but it pays off. However, I do not do it all the time.
Dr. Phil said on his show last week that he can tell 95% of the time if a marriage will work and it is determined in the way that people argue. He said that arguing is good and healthy, but when a person brings up old problems or belittles their mate that it keeps that person depressed and feeling intimidated all the time. He said that is the worse thing a mate can do. I totally agree with that and we hear that all the time on here.
Thanks for sharing Mary.
Thanks for asking. I can only do what I do because of the man I am married to. He took over everything when things got bad. He sorted beads when my hands were to stiff, took my daughter everywhere she needed to go. Cooked, shopped, did laundry and paid bills. I went to work and come home and collapsed in a chair. That was it. Now that I am on Enbrel and feeling better I hope I can take some back.
Now & Then: I watched the Dr Phil show too.. I was going to add that but couldnt remember verbatium what he said...Thanks for adding that!
I knew I was going to be in for it. This was a book for women on how to care for their husbands. I am sorry if I didn't make that clear. Of course women want and need the same thing, but women want it in different ways. Most men don't read books on self help and relationships. This was written for women.
My husband has always treated me very well. I would not have thought I could have treated him any better, but I learned a few things.
Statistically, men want sex more than women. Men normally (not always) initiate sex. Sexual desire peaks and changes at different ages for men and women. Of course, this is no secret. Chances are that women are will not always want sex as often as their man.
I never said to pretend and my heart is in everything I do for him. I can sexually show my husband in many ways how much I love him. He can also do the same for me. I do many things in my life to take care of my family that I do not feel like doing. I do it because I love them and this is how I show I them.
There is no "power" in this attitude. I know all too well what someone does to someone they say they "love" to show their power. I lived it. I have the scars to prove it. I would never, ever let someone have power over me again. Ever. Of my own free will I give, that is the only way I ever can do it now.
I don't know Dr Laura but I do agree that you should have sex when you
gon't always feel like it. You have no idea or control of how your partner is
going to interpret your unwillingness. It is harder when you don't feel so
well but you can be intimate with your partner. I like what Dr Laura has to
say.
I think most people either love Dr. Laura or hate her. I don't agree with everything she says but there were 2 books that are very good. The one I have written here about and a book about bad childhoods.
I think that is great what your daughter said to you. How proud you must have been! I mentioned something to our adult daughter that her stepdad and I have argued about something and she was shocked. "You 2 never fight, you are always lovey dovey with each other" Of course, we have arguments but I am glad the kids didn't notice.
Innerglow, you said exactly what I meant to say. My husband is very conscious of how I am feeling physically. He can tell almost before I can when I need help, or rest or just a blanket. He wouldn't expect or ask for sex when I wasn't feeling well, but that is different than when I may not be in the mood at that moment but I will definitely be feeling better
I will probably be shot down for this but after I read "the proper care and feeding of husbands" by Dr. Laura. I don't agree with everything she says, but she is "spot on" with this book.
After I read the book I made sure that my hubby had all the adoration, attention and appreciation I could give him. Sex isn't the only way to communicate but it plays a LARGE part of it.
This certainly wouldn't work for everyman. You wouldn't use it on an abuser, addict or a completely self centered person. It would not have worked at all on my first husband. But the men I know who wives have read it (some wives throw the book against the wall) and apply it are very happy. In turn they make their wives happy and chances are when mom and dad are happy together the home is stable for the children.
Just my 2cents
[/QUOTE]
That does sound bad.
I know my first husband was one that it wouldn't work on either. He was out to sea for months, come home say hi and be off with his horses. He left my daughter and myself alone one Christmas when she was two. She was so excited he was home. He told her had to go get something out of his truck and we didn't see him for almost 2 weeks. I could go on and on. I did everything myself, had to work all the time because he never gave us any money, found out about his "girlfriends" and it got much, much worse
Joonie, are you happy in your marriage???????