Marriage and being sickly! Thought this would be helpful

Thank you Linda for this post. My husband and I actually got a BIG fight last night about this very issue. We worked it out and I think we will be ok but this was just what I needed to hear today. Thank you, thank you, thank you.

Thank you for the excellent advice Linda. Works well with husbands, family and friends too.
A friend of mine has a quote at the bottom of her email, “Be kinder than necessary to everyone you meet because everyone is fighting there own kind of battle”
Best wishes,
Denise

[QUOTE=LindaH]I just saw a posting and thought this would be helpful in regards to our marriage if some of us do have a spouse in our lives while being sick. A good majority of us when we first met our spouses were pretty much so on the healthy side. Neither of us knew our futures or fate. We had fun together and shared our lives together and we talked.
Many of us know our first year of marriage is usually the best year still in honeymoon phase. Then as the years go by we become one and tend to forget what we had in the beginning.
I married my husband 19 years ago and we got along great. Several months after the marriage, I became ill. It took 5 years for them to say I had Systemic Lupus.My husband was there for me many times over. But I never realized that he too needed me for effection.
I did not realize how bad I had gotten until we separated a good year away from each other and when I saw myself, I saw I too had my own faults.
I got sick with Lupus, and every person, that I would talk to it was about me and my Lupus. My husband would come home from work and ask me how my day was, and I would start talking about how bad I felt. My legs hurt, my arms hurt, I can’t drive anymore. I can’t do this or can’t do that. Not once did I ask him how his day was. Me being at home all the time, I had nothing else to talk about. So Lupus became my life! And now I have Lupus and unknown CIDP.
Being away from him and being with my mother a year. You don’t even want to hear about my mother! 😀 LOL! I guess that is what made me see what I was like! Anyway! I saw myself in a different light. I realized that while me being sick, I almost expected him to understand, but he did not understand.
Not only was I missing my life now, but my husband was missing his wife.
I needed attention but then he needed it too and was not getting it!
For those that feel marital stress. Please sit back and take a look at what you were like before you got sick. That person is still there but is now sick! Your spouse is going through a grieving process at the same time. Not knowing what to do and not knowing what to expect and they see our personalities change.
So when my husband comes home now from work. I ask him how his day was. I never bring my illness up to him unless I need urgent medical attention. I don’t even talk about it to him. I talk about our cats, or my mom called. No illness mentioned. I tell him how much I love him and try my best to be his wife. He know’s I’m sick but still needs to know he is cared for himself.
Some of us right now can’t use our hands or walk and some can but hard using. A special dinner even if it’s a Pizza Call and a Candle burning at the table with the dim lights. Really means alot to that spouse.
Keep your marriage working by talking and not arguing. And remember that your spouse is also hurting deeply because you are sick and there is nothing they can do. Assure them that you are okay!
As your illness progresses or get’s better, the relationship you had will gain strength by working together. But you have to remember to include him in your illness but also give him or her those special needs. I hope this helps!
I have seen many marriages spilt up after a person get’s ill. And after experiencing what I did, I saw a light at the end of that tunnel and it helped me change my ways![/QUOTE]my husband has been sick over a year.I feel guilty when i go out without him.number one he gets so tired after a short time.he is also having bowel issues.and sometimes i just dont feel like lugging the walker ,or wheelchair.I sometimes just need to be away from the illness.i am a fulltime caregiver.but i am still young and want to enjoy myself for a couple of hours.I love people and love life .I have to get past the guilt.We have been together since we were 15.I never thought I would becaring for him like and old man,when i still feel young.I just wish we could walk hand in hand on the beach once more.

I understand the guilt talked about and the fatigue. But after almost 3 years, I have found that I have to force myself to go out with the gals from work, or to a friends for a weekend away. If I don’t, I get to the point where I’m depressed and can’t give anymore and want to run away screaming. Forcing myself to take a self help class and spending a little time with friends and especially my grandchildren has helped. Let’s face it. This sucks. For them and us…especially if we fail to take care of ourself. There’s a support group for those with chronic illness at a local church. I think I’m going to try that. I hope I can someday get my husband to go as well.

Thanks alot everyone.
Yes it does suck being chronically ill. We do have to force ourselves to go out. My husband has wrapped himself up in his work and church work and I’m alone alot. It seems like I need to rest alot more than I like. It does help to get out and away from the house even if it is for a little while. I would like a support group for chronic illness. Until then this is a great site;

Linda, thanks for the reminder!

It is so easy to get into a rut and forget that others also are living with the illness.

That’s why I love this site! Without it I have no support. People on here really “get it” and understand how and what you feel like every day being sick.

Make sure you do something special today for you and your family!
Examples:Call someone and tell them you love them, read a book, take a bath, watch the birds out the window, watch a movie, draw with the grandkids

Rhonda from Canada

WOW!!! Talk about a reality check!!!! Thank you so much! Reading this has really opened my eyes to a few things I have been doing to my husband. One thing is not allowing him to be sick (flu, headache, etc.). I think a little voice inside my head would scream “I am the one with CIDP not him”! “Too bad if he doesn’t feel well, niether do I, he can care for the kids I am sicker”! It’s almost like I am sick enough for the 2 of us so he doesn’t have the right to not feel well.
WOW! I can’t believe he is still around! I am going to catch myself when I do this again. I think that is a New Year’s resolution; I am going to take better care of him and baby him the way he does me:o