- 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.
Hi CJ,
ReplyDeleteAs always, what a nice post.I like your style of writing. It's very clear. I feel guilty in relationships too and I'm not even married. I can only imagine the dynamics of living with someone. I think the things you say apply to other relationships as well. I've had zoo tickets almost four years and it's only an hour away from me. I feel guilty about this because my son wants me to go when he goes. He knows I love our zoo. They have a little train people can ride if they can't walk around. They expire this year and I'm determined to make myself go as soon as the weather cools off.
I hope you are having a relatively good day.
With well wishes to you, and yours--
dogkisses.
First of all, I love this post. It is SO true. I am engaged and live with my fiancee. Sometimes we fight because of all the stress we are under because of illnesses and everything else. But I agree, talking is the most important thing. That way, things can be worked out.
ReplyDeleteSorry it has taken me so long to respond to your comment on my blog. I've been kinda slow lately. But yes, we were crazy and insane, but it was so much fun. I felt alive again, if that makes any sense. And as depressing as this sounds, I wasn't really worried/scared about risking my life.
But yes, it definitely does suck having to pay for it the next day, or even days. We want to do what "normals" do so badly, and when our bodies do actually let us, we have to pay for it later. We kinda have to pick and choose what is worth it and what isn't.
And oh, Fibro Voices. Yes, that one. I actually didn't think of it as "my" blog, because it's a compilation of some of us. I want to get it up and running again, now that you mention it. Will have to talk to my friends who are a part of it about starting it up again. Would you like in on it? I can invite you to be an author, as I am a moderator of it.
And thanks, I can't believe I made 50 posts! Insane. I gotta start blogging more though, I've been kinda lazy with it lately.
Ok, long comment, oops. Sorry.
-SarahBear
Don't ever apologize for a long comment, Sarah! I love to hear what you have to say! How does the compilation blog work? I am a novice to all that is "Blog".
ReplyDeleteI am having a hard time writing more than once a week on my own blog. I don't know, maybe too self editing, but I can't think of ideas/subjects I feel are worthwhile and add to the "conversation" as often as I would like. Another problem -- I find that I comment on a number of my friends blogs and then I am too tired to write anything on my own! I also have carpal tunnel and arthritis pretty bad in both hands. And, I am a two fingered typist!!
Do let me know more about the other blog. I am flattered and humbled that you would ask me to join. Thank you.
Hugs,
CJ
CJ, that really hit home. I am sitting here feeling so guilty today for having this..I feel like I have just ruined my husbands life with this..I know its not my fault but the fibro fog and pain cloud my thinking..and shall we talk depression? We have been married for 34 years, thank goodness our sons are grown and out..When the wedding vows said 'in sickness and health' I sure didn't think of this!
ReplyDeleteThanks for your great writing..it does help to know I am not alone because I feel very alone at times.
Barb
Hi Barb,
ReplyDeleteThank you so much for commenting on my post. Your thoughts and feelings truly mirror my own. I wrote that we need to keep talking, but I am the worst offender, keeping everything inside and stuffing it deeper and deeper.And feeling like I have ruined my husband's life? That voice in my head keeps saying, "We never should have married. He would be so much better off without me." He's taken a job out of state and has been gone since January. I keep thinking I should tell him to go on without me, to start a new life there. I mean really, who would knowingly sign up for this?
But, turn it around. What if he was the one with the chronic illness? Would I leave? No way! I would try my hardest to make things as comfortable as possible for him. I couldn't walk away, I love him so much. We would work it out. But, there is that little voice, now saying, well I am a woman that's what women do. I couldn't expect him to handle me by himself. I am too much of a burden.
Now, Barb, about here is the time I am banging my head on the keyboard. I can't win. He can't win. What the hell do we do now?
Believe me Barb, you are not alone. And, now that you have written me, I don't feel so all alone either.
Thank you so much.
CJ
I am so glad that I decided to read the comments posted for this posting....I have been feeling like such a burden to my husband. We do talk and talk and we listen but it is is still soooo hard!! I have an awesome husband and he has been more than I could ever ask for.....I often wonder if this was him with fibro would I be as good to him as he is to me?? Not that I wouldn't want to.....it is just so hard!!!
ReplyDeleteI want him to go do things but at the same time I do get so jealous!!!
I hate that I don't cook like I used to but he NEVER complains!!!
He has NEVER complained about me laying around...In fact he has NEVER complained about anything I do. He has always been my #1 supporter...so why is it still so hard????? He says he is going thru this with me and I tell him but you don't have the pain!!! I don't want to get mad but I do!
We have been married 6 years this November (2nd for both of us)and I have been diagnosed for 4 of those years...:(it just one day slapped me in the face and my life stopped!!
We are happy, we really are except that this thing called fibro and cfs and it's many other fun ailments came along and decided to get involved in our marriage!!! Well I am ready for a divorce!!!
Sorry didn't mean to go on for so long....just all of a sudden came out...thanks for listening!