My wife wants me to be well. Please advise.

[52TELE]

Hey gang , how are you guys fixed for spousal advice?

When I started treatment in March , my wife made me promise that I would always be completely honest with her about how treatment is going and how I really felt , good or bad. I have pretty much stayed with that up until now. We had a talk on Saturday about how "negative" I am about treatment , side effects and potential results of the treatment. I don't think she wants me to be completely honest anymore.
I am always , or mostly always upbeat with my son. I don't want him ,as a 15 year old to have to worry about his old man to much and with my wife I pretty much tell it like it is. When she said "completely honest", I don't think she was anticipating how bad it could get. The problem is/has become, that when she says "how are you", she doesn't want me to just say "fine", she wants me to BE fine. She obviously wants me to participate in family activity a little more , go places with her a little more , try and enjoy my life a little more , etc..etc...

I'm afraid that if I start "being fine" , she is going to have me off doing things that I really don't feel I'm up to and the problem is that is how I feel pretty much all the time. I'm not saying that I just sit in the house and do nothing , I do the best I can , but I'm thinking I'm going to need to do more.

Question: How guilty should I feel about not being able to provide my wife with the companionship she needs and am I being selfish for not wanting to be out and away from my house more?

Please , your honest opinions.

[jmjm530]

Tele: When she said "completely honest", I don't think she was anticipating how bad it could get.
-------------------------------------
I found that also to be true on treatment. Friends and relatives started off telling me they were there for me no matter what, and initially always asked how I was feeling and what they could do for me.

Later, when they realized the side effects weren't going to go away very soon, their attitude changed. Some withdrew, some just stopped asking me how I was doing. The phone rang less and less.

I remember the day (about six weeks into treatment) when one old friend said, "hey you sound pretty good". It happened to be one of my worst days, and since I've known him from childhood, felt I could really open up. For the next twenty minutes I told him how bad I really was -- probably more so than I have ever posted here. Didn't hear from him until a few weeks ago when treatment was over. Never told anyone else how bad I "really" felt.

But like you suggest, you're between a rock and a hard place. Most people really don't want to hear you're feeling as bad as you are --  but if you tell them you're "fine", then the expectations grow and they wonder why you're not playing with them anymore.

It's really a no-win but I've adopted a middle ground. I pretty much stopped complaining and detailing my sides with everyone but my shrink and doctors -- but even here (especially with my doctors) I underplayed things since: (1) I didn't want to be pulled off treatment; and (2) Got the sense that even the docs don't want to hear how you really feel :)

So with friends and family, I adopted sort of a middle ground. Often n matter of factly would say things like "Love to go to the movies tonight, but the drugs make me  prettty tired by six PM".
Or, would love to do this or that, but I still have anemia from my treatment so it's probably not a good idea. "Anemia" was a good word, worked for a lot of things :) "Chemotherapy" was another one for those who I didn't tell I had Hep C.

Anyway, for me and many others, having Hep C is a pretty lonely road, because only those who have travelled seem to understand. And still, we all have such very different reactions to the drugs.

I've heard similar to what I've described from others, but I'm sure there are many loving and supportive partners, friends and relatives out there who are the exception to the rule. For the rest of us, we have to find the strength somewhere to get through.

The trick, I guess, is to get through this without cutting off too many relationship bridges, because one day it will be over and you hopefully will be back to your old self. I never did return my old friends phone call after he disappeared for 10 months. Don't know if I ever will.

All the best luck

-- Jim

[timedog]

At least your honest.  Unfortuatnly relationships are not a game/deck of cards.

I too am divorced but in a committed relationship that has a few pre-tx years under its belt. but still at a tender age of what I hope is growth not stagnation not easy uner the tx spell.

I could just shut my weekends down but in the end it is not fair to my love so I do what i can. house choirs shopping cooking gardening and paying  attention to her needs too.

[jmjm530]

A little repetitive, but yeah, you can pretty much tell anyone anything as long as you *sound* fine. But once a little angst, desperation, anger, fear, worry, neediness etc. slips into your voice, some people run for the hills. Of course, be prepared to bite your lip when you get the "but you *sound* fine" part, and try in a nice way to explain that you do have limitations. Or, you can hang up the phone as I did more than a couple of times :)

Funny scene in the movie Network. Girl breaks up with guy. Guy, very heartbroken and desperate, talks to another friend on phone and comments something like "It's too bad *needy* isn't sexy".

Unfortunately, when we treat we often are "needy" and I guess it really isn't sexy to most.

-- Jim

[mikesimon]

I've told this story before so if you've heard it I apologize. After transplant and during one of my rounds of TX I was sitting at home (as usual) watching TV mindlessly when a preacher came on and pointed at me and said "You can get sick but don't stay sick too long cause people get tired of it. When you first go in the hospital they're sending flowers and visiting all the time but after six months they don't want to hear from you anymore - they're tired of you being sick". Ain't that the truth! I have been through 3.5 years of TX and Karen has seen what I've gone through and yet here I am again, after 2 years off TX and SVR, on low doses of TX and I can tell she's really tired of me not feeling well. I don't know what to tell you to do because you're damned if you do and you're damned if you don't - tell how you really feel. Me, I just try to not talk about it much and hope that things are cool. If she asks I'll tell her and let the chips fall where they will. I don't feel much like doing a lot these days and that's the way it is. I guess my best advice is to try and get by any way you can but it isn't easy by any means. Like Jim I have lost interest in the "friends" I had who seemed to lose interest in me. Good luck. Mike

[NYgirl]

When FLGuy said this Weekends were not just IFN days, there were also recover time from tough work weeks.

It is exactly what I was trying to say in the above lengthy post.

Also he said The expections were set early, don't count on my being my usual self and don't expect to be involved in normal social events

This is exactly what you need to explain to your wife VERBATIM.  I mean some days you will be ok and others dead. I make SURE I have the weekends to MYSELF to rest and recover (even though yes I DO take care of my kids...don't call child servies ;) that way I am ABLE TO go to work during the week.  It's a hard thing to do but we manage it.

But NOT without rest.

Plus after a while it makes it WONDERFUL - knowing I can lay in bed with a remote in my hand a cup of tea at my side and a box of fudgicles in the freezer - and just watch horrible tv all day long.  It's like a REWARD to me!

[Alady1620]

I've been going through the same delimna here.  My husband is very caring and thoughtful but I think he is tired of me being sick all of the time.  I feel bad about it so I have started pushing myself harder for his benefit.

Unfortuntely, that wasn't the best plan bc I really hit a wall on Sunday and I was unable to participate in Father's Day events.  I think that is when he realized that I was doing to much.  

When you find an answer to this problem, please come back and update us bc I am struggling with the same thing.

I did print this letter out for several family members and gave it to them.  It helped for a few weeks but then it was like they forgot.

http://www.hepcassoc.org/towhomitmayconcern.htm