husband of a lupus wife

[billie57]

i,m a husband of a lupus wife. need help ,not just being suppotive of her but also
with me dealing with her illnesss.

[Anisah]

Hi Billie, and welcome to the forum,

How can we help you? Is there something specific you are hoping to learn?

I can make some general statements, like to be understanding of the unpredictability of this disease. I can feel motivated and able to do things one day and the next day not be able to get out of bed. The way we feel can change so quickly and unexpectedly, and I find this is difficult for others to understand.

I believe you could benefit from reading up on Lupus and learning about it. You need to be careful however to not read information that is outdated or more than five years old, mostly because treatments have changed the prognosis and improved things drastically for those of us with Lupus. There is a good book that I like to refer to regarding Lupus. Its called The Lupus Book and is written by Dr. Daniel Wallace. There are three editions so please read the third edition. I find the book a good resource for looking things up quickly.

Helping your wife out around the house, or motivating the kids to help her (if applicable style_emoticons/<#EMO_DIR#>/smile.gif), would be a welcomed help to her on her bad days I would think.

No matter how Lupus is effecting us, the best ways we can help ourselves is by getting good sleep and rest, eating well, keeping exercised within our capabilities, staying out of the sun, and avoiding as much stress as we can. If you can help your wife with any of this then that would be a blessing for her as well.

Please be reassured that Lupus is not a terminal illness. Few people die from it these days. There are so many new treatments and treatments in the works. Our future is very promising. Most people with Lupus live fairly normal lives, although they must tolerate the fatigue and pain of a chronic illness on a daily basis which is not easy. I would also like to note that most people who post on these forums are people whose Lupus is quite serious, or they are awaiting a diagnosis or are newly diagnosed. The majority of Lupies are too busy living their lives to post on forums like this. I say this so you won't worry that your wife will have to face some of the serious things people are posting about on the forum.

I'm sorry that you and your family have to deal with Lupus in your life. It won't be easy but hopefully you can work on it together. You might find it helpful to go along with your wife to her specialist appointments? That way you can have lunch afterwards and discuss what happened, etc.?

You are obviously a caring husband. You are doing the right thing by trying to participate in this because her illness will impact on the whole family. I wish you both the very best and please ask as many questions as you like. I hope we can help you.

take care,

[Wallypop]

I'm not a husband, but I hope to become one! I'm really in the early stages of learning... but I do think I've figured out a few things.

One is that you and she need to do it together... it's great to be supportive and understanding, but you are not going to be able to do that by yourself. My love and I talk a lot about sharing and how we both have needs. There are times when I carry the ball and there are times when she carries the ball. For us, it's important that Lupus does not run our lives and our relatioship.

Just this morning I said to her, "There are a lot of things we can't fix, but we can d*#n well manage them."

Don't ever lost sight of the fact that you ultimately dealing with a person, not an illness. As I've posted elsewhere, I think sometimes you just love. Accept the fact that you can't understand, you can't feel the pain, you can't know... but don't stop doing what you can do, even if that's only to love.

i suppose it makes for easy writing, but I don't particularly like the labels "lupies" and "normals." It makes it too easy to create victims and caregivers. See the thread started by Bugsy, "Why can't they understand?" One of the things I love about that thread and about Bugsy is the equality and the realization that a relationship is just that - it's about relating, taking turns carrying the ball... and not noticing who's carrying the biggest one at any given point in time. In other words, I think it is critical that we "normals" not encourage dependency and weakness - because it becomes very easy to take away another's dignity. Allow yourself some needs and expect her to meet them when she can as best she can.

Like Anisah, I'm not sure if there's something specific you would like help with... there's plenty of help and resources here. I guess my caution is just don't forget to get help from the person you want to help in the process. Share!

[helloos]

Hi Billlie.

I think that others have given great advice for you. I think you have made the first step to understanding this disease and helping your wife. I think you should proud of yourself for coming here for support and to find out more information about this. Ask away and someone here will be able to answer your questions, etc. Hope to hear back from you.

[jude mack]

Hi Billie

Welcome, just coming here for support shows you are a very caring man, since you've been given
great advise, I just want to add, remember to take time for yourself, and don't give up all the things
you would normally do, or you will burn out. For you and your wife to stay supportive of one another
you will both need down time. Live life as you always have, with a few adjustments here and there
you can live a pretty normal life. It's nice to meet you.

Take Care
Jude style_emoticons/<#EMO_DIR#>/flowers.gif