- Is it okay to still participate in activities and sports that you used to do together?
- Can you accept invitations to get-togethers and activities that were for just the two of you, for ones that are for the whole family?
- Can you still have your standing Saturday morning golf game, followed by lunch with the guys?
- Is it okay to be upset that the house looks like hell and you haven't had a decent meal in, you can't remember when?
- Is it alright to be mad when you work outside all day Saturday doing all the yard work and you come inside and find your chronically ill spouse laying on the couch watching TV--AGAIN?
- Can you ever think or feel anything, ever again, without feeling guilty?
Well of course the answer to all of these is ---well, we all know what we want the answer to be. And, believe it or not your chronically ill spouse would agree with you---she wants to agree with you. She wants you to do to all the things you used to do, all the things you want to do. But, she wants to do them, too!
So there is a tug of envy and jealousy. There is some button pushing. There is some martyrdom. There is some lip quivering. But, honestly and truly she wants you to go, she understands why you're mad. All of that stuff is because she is mad at her disease. She is tired of always hurting and being tired. She is sad that she can't come with you. She is sad that you can never share many of those things ever again. She is sad that she can't even do the simplest things--like clean the house, fix dinner, pull weeds.
So, you both need to keep talking. But, even more important than that, you both need to LISTEN. Listen to each other when you are talking, really listen. Try and put yourself in the other person's shoes. This is no picnic for anybody. It is excruciating -- for everyone.
Life never will be the same. But it doesn't need to be a death sentence. It doesn't need to be the end of everything your life used to be. Through the pain and through the fatigue, and through the confusion and the questions a new life can be formed, and adjusted, and re-sized. There will be tweaking along the way, new information and new symptoms and new feelings means the conversation needs to be ongoing.
There needs to be talking. There needs to be listening. There needs to be an everlasting discussion.