devastation

Okay gang, I am going to tell you. I never, never thought this could happen to me! He cheated on me. On a business trip. He was gone for 5 weeks overseas...got lonely and went out with "the guys"...had too much to drink...and you know what came next. We've been married since 1990. We have two teen children. I do not want a divorce. He is very remorseful and we are in counseling. BUT, he finally admitted to me what I have long suspected--that being married to someone with a chronic illness is hard. Duh! It's hard for me, too! Gee, I'm sorry I'm not able to go out dancing. I'm sorry I get tired fast and have to sleep on weekends b/c of mtx. I didn't ask for this. I have never felt like a more DEFECTIVE person that I do right now.

Carol,

First you are NOT DEFECTIVE, so get that out of your head immediately!!  As for what has happened and how a partner handles is different for each relationship.  I am sorry what has happened to you because of it, though it is not an excuse, sorry I do not condon any type of cheating. That is something that you and he need to work out with the counselling. If he is using your disease as an excuse, sorry that is his guilt playing on him and he needs to work that out. 

I am NOT coming down on him, because I am sure he is truly remorsful.  Our concern here is you and how  you feel as the RA Patient and how we all cope with our relationship issues and these diseases.  I have to tell you to really reach out to Dr. Laurie she is wonderful person to help with these coping situations.

Several of us have lost significant others becuase of it, I did my husband left me in 2000 because he couldn't take it anymore. Though after being apart for 4 years we got back together in 2004 and remarried last year! 

We literally sat down and discussed the disease what was it that I could do and when. We setup code words on when we could be intimate with each other, other code words on when I am up to walking/dancing (but he can't two left feet).  We agreed that Friday nights were MTX nights so it is a Rent movie night.  We order food in, we eat around 5:30 or 6 immediately after I take the MTX and he and I sit on the sofa and watch movies.  Usually the tiredness will wear off by noon the next day.  After that we can do almost anything we want (with in reason of course). He knows that I have to stop an rest and maybe take a nap, though everything can be worked out, we just have to learn how to PLAN it! 

These diseases cause us to have to plan everything, when to take our meds, when to have relations (lack of better G rating words), walking, exercising or going shopping.  I keep a health journal that i leave in the kitchen for my entire family to see what I have done that day so they know what energy I might have left for the day.  It is now unspoken, if they want to go do something and want me to go they look at it and know if they need to plan it for another day.  IF they do they Write in my book!!  It is actually a great communication tool for us so I do not feel Guilty for saying "No I am too tired" or I can't today.  It helps to releave the negative impact of rejection in the relationships also. 
Keep in mind this is just one thing that I do to help everyone in my household cope with it.  I have also printed off "The Spoon Theroy" from: www.butyoudontlooksick.com  (sorry Creaky). After my kids read this story they now understand the energy levels that the AutoImmune diseases take out of the patient. 

My husband actually sat down with another female RA patient and talked to her and her spouse how they handle it.  If this is something you and your hubby is open to and realize we are NOT Medical or licensed health care folks, but we live the experience. I welcome you to let me know and reach out to me. 

I wish you well and will keep you and your family in my thoughts as you work through this. Remember the Creaky gang is here for you!!

Tess

There's nothing I can add to Tess's spot-on post, except send lots of cyber hugs and prayers that everything will work out for the two of you and your relationship will end up stronger than ever. [[hugs]]

I hope that everything is OK. Well said Tess. We're thinking of you.

Seth

Carol,

I often look at my husband and wonder how hard all of this must be for him.  Not only has he suffered many of the same losses I have from the disease (our finances, our home, our ability to have a second child), but he has to watch the love of his life struggle each day just to move.  I don't think your husband has any EXCUSE for his behavior.  I'm not saying that at all, but I do want to take this oppurtunity to say that there should be some kind of support system out there for spouses of chronic illness sufferers. 

In the meantime, we are are here for you.

- Kati

Thank you all so much. Other people just don't understand. I guess this crisis in our marriage is a good opportunity for my husband to deal with his own grief. I am years ahead of him on that score (what choice have I had???). We are seeing a good therapist, but separately for now. Our family has a "double whammy" in that I have RA and one of our children has autism. We have been so focused on our son that I think my husband has never dealt with my illness.

Thank you for you kind words, thoughts, and prayers. It means so much.

Carol

Tess,

You are such a comfort to everyone! I want to grow up and be like you one day..lol

J/K I know I am way  older then you.

Carol,

I am so sorry for what you are going through...I don't and can't find any words better then what Tess wrote.

What I can add is take comfort in your children, you do have them at least. I was never blessed with children of my own, but my nieces and God Children are my WORLD!

It is hard on them to see thier once vibrant auntie who took them everywhere reduced to the pain level I am at, where there are days I can not even get out of bed.

You are in my thoughts and prayers that you find strength.

Stephanie

Previously TessaD wrote:

Carol,

First you are NOT DEFECTIVE, so get that out of your head immediately!!  As for what has happened and how a partner handles is different for each relationship.  I am sorry what has happened to you because of it, though it is not an excuse, sorry I do not condon any type of cheating. That is something that you and he need to work out with the counselling. If he is using your disease as an excuse, sorry that is his guilt playing on him and he needs to work that out. 

I am NOT coming down on him, because I am sure he is truly remorsful.  Our concern here is you and how  you feel as the RA Patient and how we all cope with our relationship issues and these diseases.  I have to tell you to really reach out to Dr. Laurie she is wonderful person to help with these coping situations.

Several of us have lost significant others becuase of it, I did my husband left me in 2000 because he couldn't take it anymore. Though after being apart for 4 years we got back together in 2004 and remarried last year! 

We literally sat down and discussed the disease what was it that I could do and when. We setup code words on when we could be intimate with each other, other code words on when I am up to walking/dancing (but he can't two left feet).  We agreed that Friday nights were MTX nights so it is a Rent movie night.  We order food in, we eat around 5:30 or 6 immediately after I take the MTX and he and I sit on the sofa and watch movies.  Usually the tiredness will wear off by noon the next day.  After that we can do almost anything we want (with in reason of course). He knows that I have to stop an rest and maybe take a nap, though everything can be worked out, we just have to learn how to PLAN it! 

These diseases cause us to have to plan everything, when to take our meds, when to have relations (lack of better G rating words), walking, exercising or going shopping.  I keep a health journal that i leave in the kitchen for my entire family to see what I have done that day so they know what energy I might have left for the day.  It is now unspoken, if they want to go do something and want me to go they look at it and know if they need to plan it for another day.  IF they do they Write in my book!!  It is actually a great communication tool for us so I do not feel Guilty for saying "No I am too tired" or I can't today.  It helps to releave the negative impact of rejection in the relationships also. 
Keep in mind this is just one thing that I do to help everyone in my household cope with it.  I have also printed off "The Spoon Theroy" from: www.butyoudontlooksick.com  (sorry Creaky). After my kids read this story they now understand the energy levels that the AutoImmune diseases take out of the patient. 

My husband actually sat down with another female RA patient and talked to her and her spouse how they handle it.  If this is something you and your hubby is open to and realize we are NOT Medical or licensed health care folks, but we live the experience. I welcome you to let me know and reach out to me. 

I wish you well and will keep you and your family in my thoughts as you work through this. Remember the Creaky gang is here for you!!

Tess

 

carl, i hope you are finding peace in your relationship with your hubby and children. it is hard to be the parent of a child with any type of disease/disorder. my son had a liver transplant in 1999 so that plus my ra was too much for Steve, but when you have love and strong bonds it will work out the way it is to be!  i wish you well and u are in my thoughts and prayers,

Steph, i am catching up in age quickly so wait up for me lady!

Seth, you know me i just share my life experiences after 33 years with this disease i ans Carolan have lots to share.  she is my ideal! 

the one armed bandit tess

i'm tring folks a week without creaky has been rough. havent even been abe to chat with june on yahoo.

Hi there all!

Thanks for your kind words and encouragement. I am still struggling wih feeling defective...but it has taken this affair for me to face my own feelings about this disease. I guess I DO feel like damaged goods deep down inside, so at least I know what I need to work on. Peter and I are seeing a good counselor. This is just going to take time.

I appreciate you all!

Carol

Carol,

Remember I am just a phone call away if you need to chat more.  I really enjoyed having the opportunity to chat with you the other day. 

It is tough not to feel defective after 33 years I still do, though you learn how to cope with those feelings and deal with them. 

I wish you all the well in the world.

Tess

Hi all!

Just thought I'd send you all am update.

Peter and I are working with a counselor whom we really like and trust. The plan is for us to see him separately and together. No more secrets. One things I've had to face is I have my secrets, too--no, I didn't cheat, but I have kept some financial dealings from him, and also some things about our children. Honesty to both scary and hard. Ive had to tell him that I don't feel he values me--the impression I get is he doesn't think I make much money (I don't-I'm a teacher assistant this year; I'm returning to the classroom as a teacher next year, though). I'm down to a size 12, but I often feel I'm not thin enough or sexy enough. I've lost 30 pounds and kept it off!

I think deep down inside my husband just isn't happy with himself and projects it onto me. Or maybe he just feels scared about the RA and our son having autism and it is easier to criticize other things. Just a theory. But at least we are both committed to working this out.

Thanks for your prayers, virtual hugs, and wonderful advice!

Carol

(((((((Carol and family))))))) 

Carol,

I am glad you and Peter are working through this. Remember one thing we do always project our worst onto the people we love the most. I believe we do this because we either believe that love is unconditional and or we take it for granted that it will always be there. (I will have to differ that really to Dr. Laurie). After many years of therapy it is one thing i have learned and have a tendency of doing and noticing in myself and others. 

Steve and I still struggle with that, though when we see it happening we sit down and discuss it. Usually after a huge blow up and argument.  

As for the weight we all have had or still have these issues. Remember love is on the inside not the outside, well this is what my hubby says...I choose to believe it and still work on my weight to make me feel better.  Remember for every 5 lbs you lose it helps with the pain tremendously from the RA.  Just keep your head held high and you will get where you want to be, (or need to be).

Keep us posted on how things are going and we wish you well.

Tess