Well...I wrote before of my husbands job troubles...he has the FMLA papers there finally so if he feels really bad he can stay home.
My pain....dealing with this as a spouse, an onlooker if you will...my husband has changed dramatically. He is VERY angry at this disease, he is a Chef and his passion, his job, our main income, is in jeopardy in his eyes. He is tired all of the time. He has tried to drown the pain in LOTS of beer...even smoking some "funny cigarettes" but nothing works. This disease has hurt our marriage....his depression on top of the pain and worry he is not the man I have know for the past 10 years. He is only 30 and feels "why me?" and to tell you the truth...I am scared! I can't support us on my income. We are currently looking to move from the Chicago area (VERY expensive) to an suburb of Indianapolis (WAY affordable) because of this disease. We need to be able to afford to live if he can't work. We were going to try for a baby but that is all but forgotten now. Another expense when so much is up in the air. I may not be in the physical pain but I feel a lot of pain regardless. He will just die if he can't cook....or do anything for that matter. He feels like his life is over and I am tired of fighting and being tired all of the time from no sleep.
Does anyone else's partner feel these things? I support him 100% but it's hard...
I know what he’s going thru I’ve been there myself. Something you have to realize is that most men have been told since them where young that it’s the man’s job and duty to be the bread winner in the family. I myself was a heavy equipment mechanic for years until one day I couldn’t get out of bed and I haven’t worked since then. I had a hell of a time with depression and with deeper things that I don’t want to talk about here. He must get involve with something anything, couching after school sports or at the local VA or anything. You can’t push him into doing this or the depression will get worse but you can do something he wont notice ,make small hints ,bring home booklets about part time stuff thing like that. He will find his way but it might take time a lot of understanding from the people around him.
I totally relate how ra changes your life so drastically so quickly. Too quickly, that is why it is even harder. Now every decision my husband and I make - it seems we have to consider the ra ramifications. Be patient with him. It is a heart breaking disease and we all have to learn how to live differently. You are a saint and full of love. I know you want to be there for him and my heart goes out to you too. Take it one day at a time. You never know where this disease is going to take you so don't waste precious days worrying. I am learning that. Time is precious and worry does absolutely nothing for you. Remember that saying "When one door closes - another one opens or the window or something like that "I was 22 with a 4 year old and a new baby when I started having dramatic problems. It was so horrible. I was already a stay at home Mom....so we didn't miss my income; but I honestly can not imagine what would have happened to my family had it been my husband at the time. I can only imagine the total stress you are under with the fear of the unknown. But at the same time...I feel reall bad for your husband. The stress of him fearing a job loss and a career change must have him in a ball of knots 24 hours a day. Add the stress of how you'll react and possible fear of you leaving him? It's got to be so difficult. I'm not sure had the roles been reversed if I'd be able to deal with all of it. (Although this disease has taught me a great deal about patience)
I was married the first time for 11 years. We managed to stay married for a while....but eventually the stresses of life in general....money problems; and a basic difference of personalities we seperated. Surely the complication of a sickly wife played a part. I was single for 5 years. Luckily for me due to my excellent reaction to modern medicine I've been able to go on and have a well paying career. A great deal of which is spent behind a desk. You have to rethink things in life. It might not be the job I originally had imagined for my life....but it makes me happy and pays my bills.
Men can easily earn a living without manual labor. There is any number of things your husband can still do to make you proud. On the right medications he'll be able to live a really happy life. You've got to develope a very strong faith. I'd really like for you to become a regular part of our group. I think us as women with the disease (And the men here) we can give you great insite into what your husband is feeling right now. AND you can give us honest....girlfriend type advise that might help us see what our husbands might be feeling.
Sorry to be so long winded. I do that sometimes.
My husband is one of my staunchest supporters but that doesn't mean I don't drive him crazy or that he doesn't feel overwhelmed by all this. Be sure to keep the communication open no matter what (I am so good at feeling mad or depressed and go in to the poor me mode and hubby don't tolerate that well at allAs many of you know this is my second marriage. I was very hesitant to get married this time because I remember what a strain RA was on my first marriage. The difference this time is that my husband knew full well what RA was and what was ahead for us. With many of you your husband married a healthy, happy, active woman and then one day this happened and everything changed.
My husband now did research on his own (Without my knowledge) to understand this disease and how it effects me.....and our family. He's the first to tell me to take it easy. Not to over do it.....or to please go lay down for a little while. I never got that from my first husband. My second husband committted from the start to loving a wife that has a chronic illness. I'm not saying it's always easy....but my husband now doesn't expect superwoman; and considers everything I am able to manage a success. He committed from the start to doing more than his share of the house work and physical labor so he's not now disappointed that his wife can't manage it all.
I'm living proof that there are men out there that see our value and love us just the way we are. I'm not recommending anyone leave their marriage.....but I remember being in a bad marriage. Truth is; I managed much better single than I did in a stressful marriage everyday. I honestly think that made me sicker.
I'm also in my second marriage. My first husband definately didn't like that I no longer could go camping, that plans could change at any time depending on how I felt, that I needed help with some very simple tasks...etc. He just never seemed to get it. I suppose part of the problem was that during our marriage I did everything, from all the yard work down to all household chores, plus worked outside the home while he enjoyed tv, golf, bowling...etc. He never even remembered to take the garbage out. I ended up leaving the marriage after 18 years.
My new husband Steve is the total opposite to my first husband. He of course, knew all about my RA before we married. He's always doing something around the house and forever telling me to take it easy. He's such a hard worker. But that's just the type of guy he is...always likes to keep busy. Plus, the best thing is that Steve hates sports!
I sure hope that things start to go your way Crunchy, everyone needs (as Dr.Phill says) a soft place to fall.
Kelly -My Brett is like your Steve. A naturally energetic person so he does not mind taking up the slack, and I do feel like a slacker most of the time since ra. It is so sad - I used to love working beside him or surprising him with something I had done - I miss that so much. Lovie, you know my hubby also knew what he was getting into. Not the full extent, I didn't either, but he knew I had ra and was somewhat educated. I am so grateful for that.
Crunchy - You are such a sweetheart - you deserve so much better. Your husband just sounds downright lazy and selfish. In fact, most people that accuse people of those things are that way themselves. You need to put yourself first - you have a chronic illness - not him. If he doesn't like it and leaves - you may be better off.
PS Kelly - my hubby doesn't watch sports either
My marriage just ended a couple of months ago for many reasons. But One of the biggest ones was my husband's lack of compassion for me. He was never willing to slow down and help around the house or with the kids. My disease was such an inconvience for him. But with the help of medication and him out of house and exercise. I feel so like a new person. The stress of a bad marriage can make your pain even worse.
My husband said he would never leave me..but he did some really horrible things behind my back so I had to kick him out.
Crunch~counseling is a really good idea. I'd continue to suggest that. It's obvious that you love your husband....and he loves you. With counseling you might could make your marriage better than ever. It's certainly worth a try.
I'll keep you in my thoughts. It's a difficult situation. We're here for ya.
Crunchy, sounds like you have a rough row to hoe. I remember Ann Landers (or Dear Abby - one them) said to ask yourself - are you better off with him or without him? You obviously love him a lot, and it sounds like he loves you a lot, too. He thinks you're not pulling your weight, either physically or financially.It is hard...our marriage has been rocky with financial issues and now RA doesn't help any. I have been trying marriage techniques that work BUT it requires you to not communicate your feelings and be pleasant all of the time...your spouse wonders WHY things don't bother you any more and you just don't argue...BUT I was miserable keeping all of those feelings bottled up and I eventually exploded. He didn't really change, he was happy we weren't fighting but he still went out with his friends all of the time.
My big thing right now is he is making me second in his life behind his friends...and it hurts. I am the one who takes him to the doctors and gets his meds and cares about him and this illness. He spends atleas 4-5 days a week with his friends and I HATE it.
I guess everyone needs to decide if being single and alone would be bes for them or not...I know I am sometimes more happy when he is at work and not at home. If I get divorced I would lose my house though and that would kill my daughter.
It's been hard...the anger is the worst.
Crunchy -- it sounds like you have more money problems than marriage problems. There is a big difference. I went through a phase where I had to change my spending and I went back to school to find a way to earn more. The first thing I did was cut my lifestyle back though.I am single and dealing with this disease on my own. When it started, I was still responsible for taking care of two kids. Since then, they have both moved out on their own.
For me, I think it is easier being on my own because I don't have to explain to anyone why or when I rest. Housework and grocery shopping can be ignored. I don't have to meet any expectations but my own.
On the other hand, it is lonely and there are times when I am very ill that I am afraid. I'm tired of going to the ER and hospitals all by myself. I'm tired of not having someone to talk about. I was recently engaged. He was sweet for the most part. But he was blind and bipolar. Then, he got pneumonia really bad. I flew out to California at great deal of expense to take care of him. If I hadn't he would have died. Well, he milked all of that for over a year, using it to delay us moving forward in our plans.
Finally, it came out that he was not going to be supportive about my illness, but demanded that I be there for him.
I guess it depends on the love the two of you have. I don't like being alone. But I have been married and uncared for. I think, for me, that is worse. But if you have someone special, despite their faults, do all you can to remedy the situation. I think Arizonara suggestion is very valid. Eliminating the financial stress might be the biggest key.
Okay, you can all send me a check to P.O. Box.....
Ha! I agree it is a money problem...but it is bringing out a really ugly side of him. If I had a way to solve the money issue, I would. I owe a lot of money in taxes from last year and 2004. I have applied for loans and got turned down. I dont have any way of paying it off except to just work and save up 00. We dont have any equity in our home yet so that is not an option either. I dont know what the solution is to that problem except work and pay the bills or dont work and lose it all.
Causing your family to lose it all will certainly cause some bitterness and resentment.
Crunchy,
First of all, you are not the cause of this. It is the illness. I can really identify with your predictament. I had a bankruptcy and that was before I got RA. I've learned a whole lot about how to handle a lot of things since then.
First things first. Food, housing and medicine. I did try using Consumer Credit Councilling Service before the bankruptcy. But they were killing me with trying to make that lump sum payment. I finally decided after I got sick to just let the creditors go crazy. I kept everyone informed and did the best I could. If they started harrassing me, I told them how sick I was.
With medical bills, you get much more leeway. In AZ, as long as you are making some kind of payment, they cannot send it to collections. You also can go to each of your creditors and tell them what you feel like you can pay. But if your income is variable, as is mine because I never know how many hours I am going to up to work, it makes committments hard.
In some cases, you can get forgiven a debt. This is especially true with medical bills.
The key is to making a plan that YOU can live with, not them. And, getting your family to commit to that plan.
One thing I never do now is put my medical bills on a credit card. You are going to pay high interest on those. You are much better off working directly with the doctors, etc. I had about ,000 in unreimbursed medical one year. There were multiple hospitals. I found out that if I let the bills go to their (not an external) credit collections department, then they were more than willing to take payments from me. It depends on the facility of course.
I also have seen others have entired hospital stays waved because they could prove they couldn't pay.
Think about what you would like to have happen. Put it on paper and discuss it with your husband. Together, it is possible to work it out.
Be creative in your solutions.
Also, Crunchy, are you sure you don't have any equity in your house. With the way housing has soared, you just might even if you just moved in. Wasn't thinking about it being a tax problem. But maybe if you can work all your other expenses... I have seen where some lawyers will help you do a "penny on the dollar" kind of negotiation with the IRS. I don't know anything about it though.
Also, is your husband able to take on a part time job for a period of time? It would give him a place to focus his negative energy.
Sorry, I'm just a problem solver type person. I'll be wishing you the best. Have another pickle, it will make you feel better. What the hell, go for the chocolate!
crunchy, you are relatively new to the RA business and it is a tremendous adjustment in a marriage. I've been married 35 years and the RA has really taken its toll the last 2 years since I was diagnosed. I was used to taking care of everyone and always the one to plan occassions, do the marketing. etc.My husband plans a lot of activities without me, or he plans things regardless of how I am feeling. It is especially hard this year because he just retired and I am still trying to work so that I can keep my health benefits. I think the disease throws a monkey wrench into the best of marriages. My advice is to not do anything rash until the dust has settled. Get some counseling if you can and hang in there. You are a compassionate and bright young woman.He wouldnt have time to take on a second job...he works 5-6 days per week. When he works. His co. gives and ungodly ammt of 26 weeks per year of paid sick time. So he can take off whenever he feels like it as long as he has a doctors note. He just pops in at the chiros office and gets a note and then has the rest of the day to screw around and go fishing. I told him today that it is a real slap in the face. My tax debt is of the property/MUD/school district kind. But you guys have a lot of good advice. I hope things get better and soon.Ariandme~
What you just mentioned sheds a whole new light on the subject at hand. My first marriage was very simular. We married very young and had a baby....then two by the time I was 22. I had to grow up real quick. He on the other hand still enjoyed the life he had before. Running around with firends. Drinking in bars....late afternoons on the golf coarse and even later evenings in the club house playing cards while all that time I was at home with the children. I didn't have the option to just do as I pleased.....I had the responsability of the children. After years of feeling like a single Mother I decided "Why not just be one" and despite the way it affected my children I don't regret it for one minute. Children adjust; even to moving. Trust me on that one. Having parents that are happy eventually out weights the rest.
Sometimes two people do not have the same idea of what marriage and family are all about. In my opinion I wanted a husband....a partner to share in raising my children and taking care of our home. He didn't feel that way I suppose and he never thought I'd have the nerve to leave. In the back of his mind he didn't believe I'd have the guts to find a better life for myself. Guess what? I did....and I haven't regretted it for one minute!!
The second go around I found a man that had simular ideas about love and marriage and I can not believe how happy I've been since I remarried. Who knew that life could be so good!!
Not recommending you leave your husband.....but with this new information; I don't feel quite as sorry for the guy as I did at the beginning of your story. Hang in there girl.
Crunchy,
I haven't a clue what property/MUD/school district refers to. All I can say is that someone has had the same kind of problem before and found a good way to deal with it. Ask around, someone might have a suggestion.
You have a full load of problems and they seem overwhelming. My life gets like this. For the emotional stuff, like relationships, where things are really hard to solve I sit down and journal out my feelings. That's when I figure out what I want to do or say. If nothing else it gives me a place for my feelings that is safe. It is like going to a counselor, except you are letting yourself advice you.
Then all the other stuff, the practical stuff, I free form a list of things that must be done. I put all of it down, from buying grocercies to paying bills. Then I decide what is important and what can wait. With RA, you have to put other things to the side until you feel better. Also, I've added delegation to my list. For instance, my son was on my list to help me move.
The other thing I have had to do or it makes me very ill is to make people in my life, those I love so very much, to take responsibility for their own stuff. This has been very hard for my daughter because she is mentally ill. But she is doing it. If she can, your husband can face up to some of his responsibilities too. If you are married, you are not in this disease by yourself. And, he has no right to demean you for any part of it.
Unfortunately, it is the emotional things that hurt our health the most. I have had to temporarily and sometimes permantently shut people out of my life so that I can stay well. This has included a long time of not having anything to do with my parents. We are back to communicating now, and their attitude is much better. But I still limit and control my interface with them.
Setting boundaries is very important in suffering the wear and tear of this illness. "No" must become your word when others are pushing you too far. If you're like me, and have a great deal of problem with this, get a book or get a counsellor to help you learn the skills.
No, the house does not have to be clean every day of your life. You don't have to cook every meal. You can pick up that item from the store tomorrow. If someone else in the family needs it that bad, they can get themselves (doesn't apply to young children of course). No one has the right to call you fat or lazy. That is just abusive and clearly unacceptable. I suppose your husband is perfect physical specimen with no flaws. Even if he is, it is cruel to talk to you that way.
In order to make ourselves well, we have to take care of our inner selves and concentrate our energies on what makes us happy. That's what you have to look for first. Everything else comes second. It is happiness within that changes how our bodies react. I kind of think if we could find this, our over active immune systems would turn themselves off.
Of course, I am no where near this point myself. But I know when the stress is high, it feels like my whole body is hot, then a flare starts and I'm in trouble again. So, I am trying to concentrate my energies on more positive things, including people who have a positive influence on me.
With all that you have going on, maybe it is time to treat yourself to some shut down time. This is when you do nothing, absolutely nothing. Then let the world spin around you. It will change everyone's perspective.
Good luck.
Deanna, You should be a counselor. You give great advice (I was recently engaged. He was sweet for the most part. But he was blind and bipolar. Then, he got pneumonia really bad. I flew out to California at great deal of expense to take care of him. If I hadn't he would have died. Well, he milked all of that for over a year, using it to delay us moving forward in our plans.Finally, it came out that he was not going to be supportive about my illness, but demanded that I be there for him.)Deanna
I agree that you give great advice. I love your direct and to the point style that also contains an overriding feeling of loving concern. There is so much packed into that last post of yours. Thank you.
Cynthia
Roxy, thanks for you comment. It's hard knocks that teaches me.
Justme,
I understand your concern. But being bipolar does not mean someone is going to murder another person. My own daughter is bipolar and she is the gentlest person even when she is maniac. Mental illness does not make a person good or evil. A person is good or evil with or without a mental condition. I learned this from a very close friend who is a physicatric nurse and from my own experience. I have had a lot of exposure to mentally ill people over the last few years. This seems to bear true.
If they are untreated, that is a different situation. And, I didn't do this out of desperation. You're thinking that seems a little unjustified. I fell in love with him. I cared about him. I knew things might not work out, but there was a life at stake. I will not take back what I did no matter how it worked out.
I was never in any danger from him. He is a good person. He just couldn't make a comittment. His illness was a struggle at times. But I learned a lot from him.
I have been in danger from other men in my life. So, I am very cautious.
But please don't assume that motivation was out of some great loneliness. I am lonely sometimes. But most of the time, I am completely happy with my life. No one in my life would ever call me desperate.
When I first seperated from my first husband a good friend of mine said to me "I'd rather be alone....than wish I was" and boy did that hit home.
There were plenty of times during all those years that I felt very lonely and alone even when he was in the next room. Just because you are with someone doesn't always make you happy. Sometimes it can make you very unhappy.
Being lonely doesn't make you desperate.....or all together unhappy either. I think being alone and learning to be responsible for your own personal happiness is a lesson we should all learn at one point in our lives.
You can't be happy with another until you've first learned to be happy with yourself.
I agree your advise is right on Deanna. We're lucky to have you as part of our group.
Deanna, I was not talking about you specifically, I was talking about a lot of women and what they do out of loneliness. And when I spoke of bipolar, you are correct about the fact that not everyone is dangerous. The incident I spoke of was fresh in my mind about a man who broke into a church in my area and killed two nuns. I do believe that he had not taken his medication.Justme,
I wasn't taking it personally at all. It is just with having a child that is bipolar, I find myself continuously educating people. There is so much stigma involved. I can understand how upsetting such a situation that you describe would be.
I agree we have a lot to learn. I tell my daughter and my niece that I can be very good at telling them what not to do, but not what to do. They both laugh and agree. I have made pretty much all the mistakes. Can't say it won't happen again. In this, I am an incredibly slow learner.
However, I am proud of these two. They seem to be learning from my mistakes and are much stronger women right now than I was for a very long time. That's because we talk only about it.
So keep talking.
Deanna, You keep on educating. I have made it a personal mission to tell people as much as possible about mental illness. It is definitely the worst disease as far as stigma and lack of care. I have to admit, now I also like educating people about ra too but mental illness is more important to me. I would not trade RA for schizophrenia, bipolar, they are very painful diseases, mentally painful, socially painful, physically devastating diseases and the meds they have to take have horrible horrible side effects.
So KEEP ON EDUCATING
So anyways, back to me and my problem....ha ha...just kidding. Things were better today...we will see what tommorrow brings. I have not really had the chance to talk since we have been working and busy. Hopefully we will have some time on the weekend to work on this. Thanks for all of the support though guys---yall are great.
Sometimes men take us for granted and think that we're stuck and would never leave. Once they realize we think other wise it might just be all you need to bring change. money is the root of all evil! My husband is young, 30, and I am 35. He is used to having big wads of cash on him from back when he was 17 on up. The single guy...mack on the ladies and have cash to blow....but now we are married and most of his friends are 22-23 and single, going to bars, discovering the legal drinking age....so it is hard. He does not know how to split his time and I told him last night I REFUSE to be second to anyone but my daughter and if he thinks I will stand for it anymore I won't. My family will help me financially and I would get another job so I could keep my house...I don't need a man, never did! I am teaching my daughter to be domesticated and independant and not to settle for just any man. She is very smart and wants to go to college and I encourage that. She knows that marriage is a good thing, just not with someone who will treat you badly or with no respect. Men mature more slowly than woman in fact, you are lucky to find one that has matured at all. My hubby takes our relationship very seriously but he is 54 and he still reminds me of a big little boy sometimes. Aria, maybe marriage counseling to help you communicate. My hubby and I did it at the beginning of our marriage and it really helped our communication. Sometimes it only takes a couple times for them to "get it". I wish you luck, you may not need a man but when a child is involved - splitting up is a huge decision ! Gotta agree with Fiona Ari. Running around with guys that age is asking for trouble. All these men are single, footlose and fancy free. Does he actually think it's good for your relationship to be doing that? He needs friends his own age as well as friends that are married with children like he is. He definately has some growing up to do. I can see how this would be a HUGE problem. Especially considering you are older and obviously far more mature than he is (Despite the age difference). All women need a man they can look up to and admire. Otherwise it's a major turn off. Once you've been turned off by such behavior it's seriously hard to get that spark back. Hope he sees that before it's too late!!
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