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cdogjune
05-30-2007, 07:21 PM
My wife has Lupus and I'm having a lot of guilt because I feel at the end of my rope dealing with her disease.

We were married 3 years ago. We have five kids together, 3 are hers, 1 is mine and 1 together. Before we were married my wife told me she had been diagnosed with Lupus and other than a 2 week hospital stay when she was diagnosed she had few problems with it. She let slip a couple of weeks ago she was sick for about six months after that. I really wish she would have told me the extent of her Lupus problems before we got serious.

We had a child shortly after being married and ever since then she has been in a constant flare. Our baby will be three in July. She has been in the hospital no less than 15 times, I lose count, since we got pregnant.

I love my wife and it kills me to see her sick, but the human nature in me gets so frustrated when she can't help with house work or I see our financial problems and she can't work.

I feel horrible that I get mad when she is sick and at the same time I'm so sick of doing everything alone. She is short with me and the kids when she feels bad and spends most of her time on the couch.

I've heard that people with Lupus will have energy one moment and none the next which is frustrating because she has energy to go shopping or take the girls to gymnastics, but doesn't have energy to help fold laundry or participate in activities with me.

When you marry someone you imagine that you will be happy with your spouse, not constantly miserable. I'm too stubborn to ever leave my wife, but I hate being angry at something that is not her fault. Can anyone give me advice or have you spouse send me his feelings.[/img]

Kokopelli
05-31-2007, 08:36 AM
Hi cdogjune,

I can't say that I know exactly how you feel. My mom has Lupus and has had it for the majority of my life. I can understand the feelings of frustration, guilt and helplessness when it comes to the sickness and even some of the resentment about not having the energy to do things.

5 kids is a lot of energy! Are the kids old enough to be able to help with folding laundry? I can certainly see how that would be a daunting task with 7 in the house. I have a hard time keeping up with just my husband and I sometimes!

I guess I don't really have any advice right off about dealing with the situations at home, but just maybe come comfort in knowing that the feelings are normal and try not to beat yourself up too much about having them. You are right, I think, in that she should've been honest with you about her disease and should share how she feels with you. Her being sick is not a "her" thing, it's a family thing. It effects all of you, so all of you should deal with it together. Perhaps that would take some of the burden off of her and she wouldn't feel so consumed by it?

Beyond that, I would say maybe some counselling for yourself and maybe with both you and your wife to work through some of this.

I hope I don't get in trouble here...but sitting on the couch is no way to live life. I know there are times when a person just can't get up....but living on the couch waiting for a disease to take over, enables the disease to stay flared and energy levels to stay low. She has a commitment to you and to kids to be a mom and a wife....and she's sick. You have a commitment as a dad, a husband and the unforeseen one as a caregiver. There is a middle ground where it can all meet. Compromises can be reached and common ground established. Families do it everyday, and a lot of families on this board to it. Sometimes, she just needs to be sick and be taken care of. Other times, she may need to pull strength from some where (inside herself, you, the kids) to be able to get off the couch and do something for the family.

Neither one of you is in an easy position. Compromise and understanding needs to happen everywhere it sounds like. I'm rambling...I do that sometimes....

I hope you find what works for you and your family. And welcome to the board!

Saysusie
05-31-2007, 09:48 AM
I hope that you will not take this the wrong way, but I would venture to say that she can feel your anger and frustration and that only makes her want to do less and less with you and/or for you. It is hard to imagine having to live with a disease that you know will NEVER go away, will NEVER be cured and that there is NO guaranty that you will ever achieve remission. That is a daunting realization that we have to live with 24 hours/day..seven days/week. Add to that the fact that something, somewhere, is always hurting and there is nothing that can be done about the pain, other than to take medication which more than likely makes you drowsy. Then, you are drowsy on top of the regualr debilitating fatigue that you feel constantly because of the disease. This is a lot for a person to have to deal with every day of their lives and to know that it may never get any better. This alone causes immense stress which, in turn, exacerbates the disease. Add to that the stress of knowing that your partner is angry and frustrated with you!! A vicious cylce that can only lead to worsening of the disease!
Put yourself in her place and imagine how you would react living like this and having no relief and knowing there is no cure. Do you really think that you would be eager to do things with and for a person who is showing signs of anger and frustration towards you and keeping track of what you do and do not do?
Not everyone's Lupus is fine one day and awful the next. Many of us have months and months where our lupus is in a constant flare and we may only have one or two days where we feel any kind of relief (and that may not be much relief at all). On those days, because she can feel your anger and frustration, she probably feels more comfortable with her friends or the children because she does not pick up those feelings from them.
I feel that there is resentment occuring on both sides here. I want you to read "The Spoon Theory" : www.butyoudontlooksick.com
This will give you some understanding of what we feel like and what we go through every day of our lives. ALso, here are some very good books that you might want to read.
-The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace
-Lupus: Everything You Need to Know, by Robert G. Lahita, Robert H. Phillips
-New Hope for People with Lupus: Your Friendly, Authoritive Guide to the Latest in Traditional and Complementary Solutions by Theresa Foy Digeronimo

It is important that you, as her husband, understand this disease, how it affects her, how her medications affect her, how the disease itself causes chemical imbalances that lead to depression, how the symptoms can change and how the disease istself changes. You must understand so that you can eliminate some of your resentments, anger and frustrations.
She, too, has a responsibility here to HELP YOU to understand and to make herself knowledgeable about her Lupus and how it affects her and, especially, how she is affecting her family. The only way that she will be able to manage this disease is if you and she work together as a team. To do that, you must be willing to understand each other's needs and emotions and NEVER let resentment build up to the point where it affects the family.
I agree that you and she could probably also benefit from counseling, but certainly open, honest, respectful conversation is sorely needed!
I am sorry if I am being harsh...I apologize, but this is a very sensitive area for me!

I wish you both the best of Luck
Peace and Blessings
Saysusie

cdogjune
06-01-2007, 07:17 PM
I appreciate your comments. I do need some honest feedback.

I guess it comes down to sucking it up and letting my hope that things will get better carry me.

I have tried to talk with my wife, but she feels so guilty about her condition that my feelings are usually overshadowed which is understandable.

I love my wife and want her to feel better, but I fell in love with a healthy vibrant woman and she has been gone for a long time, it is often hard to keep up that hope that she will feel better.

widgelli
06-01-2007, 10:15 PM
I too hope you dont take what I say to heart too much.
I am the wife of 45 yrs, of an SLE suffer from Australia, and in the last couple of years, I have watched my beloved husband , who was once an A grade golfer, a representative cricketer, to the extent of being selected in the over 50s cricket team to tour England and an A grade tennis player, become a bloated shell of himself, after having suffered a bad back injury, then cancer and now when I look back , he has had lupus as well on top of all this, which was not diagnosed till a few months ago. This has really knocked the sox off him, and he feels so useless at times.
I am a highly qualified equestrian instructor, but I have had to give this work that I loved up, along with my riding, to stay at home with my husband. I dont go out much, as I dont want to carry home such things as the flu, so do live a rather isolated life, but I dont resent him for this.
In our marriage lines, there was a vow, which said " in sickness and in health", so that is they way that I look at it. It is now in sickness, through no fault of his own, he is unable to work , or do much at all.
There are some days when we can go for a visit to a friends place, first checking that they dont have an infection running around the place, but most of the time, we stay at home.
I too may be able to whinge about the fact that maybe he had this when we were married, maybe he didn't, but I can assure you, if you really love someone, you dont worry about these sorts of things, you just get on with life.
If the washing doesn't get folded today, so what? It wont run away , but will keep for when your wife is feeling up to doing it, or when someone else has the time, and if it doesn't get done, then so what?
I do think that things could change quite a bit, if you just took a long hard look at the pressure that you are putting on her. Stress does not help this rotten disease, and the less that she has the better.
Is your wife getting the right medication?
This may also be a problem, if it is not working properly for her.
My husband is at the moment, having a problem with walking, so is now looking at changing his medication to try and help with this, so he too spends a lot of time on the lounge, watching the sport on TV. He would much rather be out driving a tractor of truck, but both he and I have to accept the fact that that is not possible.
Accept your wife and love her for what she is now, not what she has been and what she may be. Live each day as it comes.
Forget about yesterday, as it is gone,
Dont worry about tomorrow, as it is yet to come,
Think of the present, as that is just what today is,
A gift to you.

Kokopelli
06-04-2007, 08:34 AM
I appreciate your comments. I do need some honest feedback.

I guess it comes down to sucking it up and letting my hope that things will get better carry me.

I have tried to talk with my wife, but she feels so guilty about her condition that my feelings are usually overshadowed which is understandable.

I love my wife and want her to feel better, but I fell in love with a healthy vibrant woman and she has been gone for a long time, it is often hard to keep up that hope that she will feel better.

Remember that your feelings are just as valid and as important as your wife's feelings. It's a hard thing on both sides. You obviously do love your wife, or you wouldn't be here trying to understand and get some help and understanding for yourself as well.

Yes, there's going to be resentment, anger, frustration, depression...but you are also grieving. She is grieving for the woman she used to be, and you are too. She needs to listen to how you feel as much as you are listening to her. Facing things together makes you both stronger (and not just the two of you, the children are fighting this diseas too). You can draw from each other's strength and love is something very strong - stronger then any disease out there.

Live on those good days and love extra hard on the bad days. I wish I could tell you that it's going to get a lot better, but I don't know. Remission is always something to hope for and pray for. It doesn't happen!

I spent a lot of time being angry at what I thought was my mom. After years of therapy and soul searching, it's not my mom that I'm angry with...it's her sickness, the doctors because they can't "fix" her and God for allowing it to happen to her.

Oluwa
06-04-2007, 01:55 PM
Cdogjune...

I can see both points, both sides, frustration, resentment, the guilt. I have great empathy for you both. You envisioned a different type of marriage and she envisioned a different life, health. Only if we all knew what was in the cards. Would life be that much greater? Would have we stopped doing the things we would have naturally done, let it taunt us looking over our shoulder or gone overboard and lived hard. Whose to know? None of us.

For me, being inflicted with SLE I just wished I had known earlier in regards to receiving treatment. I wasted many hours, doctors visits, blood draws, pounding my head against the wall trying to figure out what was wrong. Wondering am I going loony, now I know I wasn't. Humm..would I have known if I truly was?

For the financial aspect of it, has she appied for Disabilty Income? Sometimes when one is disabled, there is a program that would pay for outside help. I believe that would be through DSHS. Check it out.

Is your wife doing all she can to help with a better self, to minimize her symptoms. Eating right, exercise, even if it is light. The books that Saysusie recommended is very informative, good reads for both of you.

For me, with SLE I sometimes find it hard to find some stimuli so I lay beached on the couch too. Hard to set goals, when all I feel is pain and know there is no cure. Times too, I feel like there is no light at the end of the tunnel, leaving me to feel depressed, alone despite my husband being in the same room. When I feel like that I look for things to get me out of that thought. I indulge with my senses, in colors, smells, flowers, warm baths, cocktails, soft PJ.s...most of the time it works. Sometimes not. I don't make husband responsible for my thoughts, but I do ask him now to give me that support cheer. Come on girl, let's....stretch, sit on the swing, lay in the grass, go for a drive to the beach at night..anything, play Yatzhee.

I being a believer of marriage vows doesn't mean your position isn't understandable. I feel like my husband is sentence to this, this ugly Lupus just like I am. But I do acknowledge the fact, he does have an out. If, I ever get in the positon where it was making his life miserable and I was too heavy to carry, I would give him his life back. I'd feel awful if he would leave, but I think I would feel worse if he stayed.

We, who have the disease are not that fortunate to walk away from it. Reality check. We can't. Gosh, only if we could, wouldn't we be blessed.

Try all things, seek counseling as suggested, read, converse, be honest, sensitive and then re-evaluate your position. Only you will know what is right for you.

Take care of your mind and spirit, it will show and in turn it will probably help her too.

Keep well,
Oluwa

camyskitties
06-04-2007, 04:53 PM
Yes, that is a very good point Oluwa.

Cdogjune: If you knew before you married your wife she was going to develop lupus years down the road would you have still married her? Just something to think about. My guess is you probably loved (and still do) her so much you would go through anything with her. Well, that is now, and she needs you!

Oluwa
06-04-2007, 09:57 PM
Cdogjune,

Oops I forgot, a common thing with Lupus but....I meant to add this link to my last post. It is information from the Social Security Department for Social Security Disability Income. SSDI. Check it out.

http://www.socialsecurity.gov/pubs/10029.html

and also a quick at your finger tips, info on Lupus. Read, read and maybe it will help you with some of your feelings and thoughts towards your wife.

http://adam.about.com/reports/Systemic-lupus-erythematosus.htm

Keep well to you and your wife,
Oluwa

Missy
06-07-2007, 03:55 PM
My husband once told me that he does this for me because he knows that had it been him, I would have done it for him.

It's what we agreed to, but it doesn't make it easy. I know the "couch time" is hard. I spend a lot of time on the couch, too. However, sometimes when you only have a limited amount of energy, you want to use some of that energy to do something fun, as well as those chores to help out.

I'll be thinking of you and your wife.

happy1
06-29-2007, 12:18 PM
Hi cdogjune- My husband and I have a similiar situation, minus a few kids. We have 2 (one I had before as well). I was well when we met, and had been for several years. I was young and didn't realize the seriousness of m disease. I didn't look or feel sick and hadn't for several years. We married and got pregnant-I flared during the pregnancy and have been flaring ever sense (about 2.5 years now). My husband and I had a lot of plans prior to me getting sick again. We still have those plans, but they're kinda on hold. It is hard. I can understand your feelings of resentment.
I do think counseling is a geat idea, however if that is not available to you-this website is a great therapy. Make sure you find your outlet, maybe it's taking walks, listening to music, exercising, writing, painting or whatever. Just make sure you get time to yourself just for yourself.
It sucks, who can argue. It's sucks for your wife though, too.
I commend you for hanging in there--keep on keeping on.
Erin
P.S. If they laundry doesn't get folded, worse things could happen!

gretchen_ga_01
07-14-2007, 10:01 AM
I happen to be a single parent mother with a beautiful little girl and i have lupus.. with only one child much less having five children as ya'll do i get worn out so quickly! Just lifting a baby bag and carrier up my front steps wears me out! I makes me feel like i'm trapped inside a body that can't keep up with what i want to be doing! :? I never even have time for myslef and i'm always running in circles.. So try to keep in mind that lupus is already exusting without the task of tending to five children.. My advice is sit down and tell her how you feel cause i know she's frustrated with the disease herself. Sitting down to talk will help you both be able to have a better understanding of each others sides, but make sure to listen and not argue, put yourselves in each others shoes. Then try to help her with little things like carrying the kid's stuff to the car, little things that will help her save energy! If you already help out all you can with the kid's then you might want to try to help on her end.. offer to let her take a small nap mid day and make sure she gets time through the day to sit down and eat.. helping with the little stuff might make a huge difference. When it comes to doing fun stuff try to do low impact activites.. maybe pick up some food and take it down to the park and eat it there then feed the ducks the left-overs :D or go let the kids play on the playground while ya'll sit on the swings together or go swimming.. do activites that are low energy for her, but you will both enjoy! & if she still stays on the couch she might as well be doin something useful.. buy her some books to read about how to cope with lupus or about lupus and family life because maybe she's just having problems adjusting.. hpoe it works out :)

LupusLeaper
07-21-2007, 03:31 PM
My wife has Lupus and I'm having a lot of guilt because I feel at the end of my rope dealing with her disease.
....

When you marry someone you imagine that you will be happy with your spouse, not constantly miserable. I'm too stubborn to ever leave my wife, but I hate being angry at something that is not her fault. Can anyone give me advice or have you spouse send me his feelings.[/img]

This is a tough situation. I've been married 23 years and when we firsts got married I didn't know I had lupus. We went on to have 4 babies and after the last one my lupus started to progress. There came a time in our married life that we had to make a decision. Did my husband really want to stick around when his wife was never going to be well? We made the commitment to each other to stay with each other in sickness and in health. A deals a deal and I didn't ask to get sick.

I ended up on life support a few years ago and the Dr.'s didn't give me much hope. My family began making funeral arrangements and they let my four kids in while I was in a coma to say goodbye.

Obviously I made it though all that but it really put things into perspective for all of us. I'm still very fatigued and can't do a whole lot. My family pitches in and helps out with just about everything and not a day goes by they don't tell me how much they love me and they are glad I'm still around. I'm still able to skydive but only because my friends and family help me with that as well. My son and husband pack my parachute for me and help me rest between jumps etc.

It's a very tough deal. No one asks to get sick. But when someone in the family has lupus, the whole family has lupus. The only difference between you and your wife is you don't have to deal with the pain and the sick. I'm sure she would love to be able to do the things you need her to do rather than deal with what she is dealing with. I'm also sure she is as upset about it as you are.

If she has enough energy to take the kids shopping and to sports and things, rejoice! She's around to do those things! It could be so much worse. At least the kids still have a mother to do those things with. At least you still have a wife. Let go of the things she can't do or doesn't do and be happy with what she can do and does do. The more mad you get about her inability to get things done the worse things will get. Nothing is going to change. She'll still have lupus. She still wont have enough energy to do everything.

Maybe enlist the kids to help out with the laundry and other chores you need to get done. You'd be surprised at how well kids can do things even at a very early age. Like I said before, you all have lupus. You need to all be working towards dealing with it and making life work. A Mother with lupus just can't be and do everything. We can't be that model perfect Mom that everyone sees on TV or even down the block. We have to choose what to spend our energies on and a lot of time laundry just isn't going to be it.

I'd personally rather take the kids shopping or to gymnastics rather than laundry because I don't feel well most of the time and I need something that is going to make me feel just a little bit brighter. I totally understand what your wife is going through. I also understand your frustration. I'm not trying to discount that either. But I also know it can work out if you and the whole family are willing to work at it.

cheryl_v
10-17-2007, 06:14 AM
Hi, I hope you are getting the advice that you are looking for. I hope I don't affend any one with my advice. I've been sick for years, only now my husbands coming around. I just hope your wife appreciates the work you do. I have 3 kids, run a home day-care, and take care of the home. Its frustrating doing it all by myself, while he's watching tv relaxing. Even though I'm the ill one, I know your frustration of doing it all. I love my hubby dearly, my illness affects a lot in our lives. I just keep talking to him, trying my best not to argue about it. It doesn't help my work load, but I feel better that I said what I feel. Does she have an on-line area to chat and vent? It helps, maybe thats what she needs. Her own private place to vent. Her illness will not get much better if she doesn't get up and move around. If you need to vent, I'll listen.