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.

[friole]

It is funny isn't it -- these sympathy pains. Yet I think a lot of it has to do with roll playing --- I have always been a get the job done person, and hubby is a why do it now when you can do it later kind of guy.  Now I am the why do it now, or at all, kind of gal, and I think it has gotten damn confusing.  Even at work, I really don't mind slacking off - in fact, I think I am proud of it -- I have been the workaholic for years, and it is kind of nice to see others working harder than me. LOL
frijole

[Algernon]

You may feel like a total grump but you sound very thoughtful and open.  And I know you have a great sense of humor.  I bet that that still comes through with your wife.

At some point I also used the don't ask/don't tell policy.  After a few months, I didn't want to lie about how I felt ("sure, I'm fine") or go through a current list of symptoms.  I literally told my loved ones to just assume that I feel "the same as TX usual" and please don't ask me how I feel.  It was a relief for me and for them I think.

Two weeks off TX now and I really feel reconnected to my kids and family.  There is light at the end of the tunnel.  Take care.

(Timedog:  I didn't mean to imply that relationships are like a card game.  My former husband is my best friend (and the best poker player I know).  He took care of me all through TX.

[amirtracy]

Haha! I know what you mean! My hubby, bless his heart, does seem to suffer from sympathy pain as well. I'm sure it's coincedental, but now he has allergies he's never had, ulcers (self-dagnosed mind you), his head hurts and he doesn't sleep so well. He's tired like never before. Usually he says "me too" when I say something hurts so I've quit complaining so much. Hey. Wait a minute....;)

[friole]

fishdoc -- you got that right!  I was so grateful my hubby didn't test positive for Hep C I was cheering. Don't think I could have handled 11 months of him on tx. He is such a demanding sick.  He seems to have sympathy tx -- all he wants to do is lay around too.  Makes it easy right now, but I wonder what will happen after I get my energy back..  He is the kind of guy, when you say, my stomach hurts, well, his hurts more....  

Now don't get me wrong - he has been totally supportive of my treatment and understanding when I back out of family committements and just lay around on weekends.  I would have a hard time doing this without him, and it has been hard on him. He feels for my hair loss and everything else.  Still, I think in his heart of hearts, I think he wishes I did not treat

[52TELE]

Thank you my friends. Thank you for sharing personal information with all of us that you more than likely wouldn't have shared with anyone else in another setting.

My thoughts from reading your posts and reflecting on my own personal feelings are that:

Families pull through. This is no time to alienate myself from my loved ones.
Honesty has to be there. This is also no time for trying to keep up a front for the people that know you so well they see right through it anyway. Its counter productive.

There is middle ground , we just have to find it through communication with our loved ones and the trust that kept us married to our spouses all of these years.
I can't stand the thought of for the next 8 months , trying to act like I feel one way and actually feeling the opposite. There will be those days that we don't feel like getting out of bed , and those days that we feel as though we could run a very short marathon. Our spouses have to be able to trust what we tell them and that trust comes from us displaying the willingness to meet them part way .

I too am tired of being sick and talking about being sick. I think a "don't ask-don't tell" policy maybe the best way to relieve the pressure of wondering if our loved ones really want to know , or are just trying to be polite.

At the end of the day , all that we really have are our families , spouses and good friends , some of us don't even have that. Some don't have any support at all and this is the place we go to find comfort from those of our kind. Thank you all for being here and sharing your lives with all of us.

Mark

[Kalio1]

I agree. We are the ones who are sick and as much as we wish we could function "like normal" we just can't. It doesn't work to "fake it til you make it" on tx for me, if I do push myself and force mysef thru activities, I pay a price for that, it is like a "set back" and I become sicker, weaker and more miserable. I know it is tough on those around us and I do sympathazie for ANYONE caring for someone who has a llong term illness, but I'd like to think if the tables were turned, we would be there as the support person. We have all gone thru this so our compassion level has reached new heights knowing what we do now which would make us better caretakers.
I know it is tough, I try to bring it up to my husband and say "hey I know this sucks and seems to be going on FOREVER and gets really old" because I feel for him. I WISH I could be doing all I did before but a couple times when I did force myself it made me pass out and once I had to leave to be sick which was so embarrasing, more so because it was a social situation.
The sickness and health clause is in the vows for a reason!

[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

[Rogirl]

I think now is the time to be completely honest. And from what I understand it is difficult to project from one point to another how you will respond to ongoing tx.
I just started tx--I've had two shots and so far other than constant fatigue I feel like I did before I began. But I know that can change at a moments notice. So an okay day now doesn't guarantee okay days in the future.
I don't know that a spouse or any significant other can really understand. I know my husband tries--but he says "well it's just for one year"--yeah--one year--to me this is a big deal and a year is a long time.

[sfbaygirl]

I know how you feel with the spouse. John has been nothing but supportive and always wants to know how I am. Most of the time he doesn't even have to ask, he can see all the blood has gone out of my face.

A few weeks ago we ran into some problems, because he doesn't think I am paying enough attention to him. He wants nurturing too. I have so little energy and libido it is hard to do this. So I try and make sure he knows I care. I go hug him while he's watching the game, or ask him if he needs something. Sometimes I SURE don't feel like it, but I do it anyway.

Yesterday I took his daughter to get a father's day gift at Nordstroms. He wanted Barnes and Noble too. I couldn't do it all. So we got some shirts wrapped at Nordies, went to Safeway and bought Barnes and Noble and itunes gift cards and home I went for a 2 hour nap! He loved it and said he felt very taken care of.

I think it is the little things that the family needs. I can sit and visit for a while, go to a movie (although I may sleep and have) and I can cook simple meals. All seems to be apprieciated.

At one point I asked him,"do you want me to stop tx?" Of course he didn't. It is really hard on the family. John says he feels like he is on tx too. I know what you mean about not complaining or saying how bad you feel. I really don't think people want to hear, and frankly I get sick of saying how I feel. It's bad enough to feel it!

[Dale_Ray]

I have little advise but confirmation that this treatment is as bad if not worse for the spouse as it is for the patient. My wife was exactly the same in wanting to keep up with me emotionally as well as any side affects. It wore her down and I've gotten to where I keep it inside. I push myself to take her to dinner and a movie or to do this or that. Mostly just trying to prove to myself I am still a man. I certainly don't feel like one some days. For me I let guilt and trying to make her life a little more livable take me to a place where I over exerted myself and tried to fake everyone off and make them believe I was doing great. I wasn't and for every time I over did it I would suffer through increased symtoms of the medication. I know one thing if you don't take care of yourself over this next many weeks and get as much rest as possible your probably pushing the medicine's gains backwards. My new deal with my wife is that I am sick of talking about being sick and for her to just love me and forgive me for the stupid stuff that just jumps out of my mouth. I know what you are going through I just wish our wives could comprehend it as well. Get her a metal when it is over:) I'm taking mine to an island where she can't get away - ha! Dale PS: Remember to that she is feeling guilty everytime she goes somewhere and enjoys an outing. She is thinking about how you must being feeling at home feeling like c**p.

[fishdoc]

going through the same things, but not with hubby, I only see him on weekends, and he comes in and does my laundry, goes grocery shopping, etc.  Pats me on the Behind as he walks by the bed, which is pretty much where I stay on weekends (shot 19, 8 riba a day).  But, my mom is staying with me, and she is getting pretty bored, and I am not the entertainment committee.  Essentially, they cannot have it both ways, it can't be about us, and long term health, and about them, and their need for immediate gratification.  I suggest if you 'cover' and make the effort to participate in normal activities, you're gonna wind up on your @ss, and then it takes three weeks to get back to our semblance of normal...better to be brutally honest......although I agree, children are a special case... spouses and parents.... can take a backseat for 11 months...just my opinion...

[FlGuy]

I'm not one qualified to give spousal advice, but I'll tell you how it worked for me.  During tx my kids were 15 and 10.
Early on in tx I realized that I could not keep up my normal routines, especially on the weekends. IFN was more 'demanding' than riba.  Although I missed only 1 day of work - weekends were mostly lost time. 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 (get togethers, malling etc).  I realized that for the good of the family I had to deal with tx, do what it takes and basically sequester myself for the duration. Weekends were not just IFN days, there were also recover time from tough work weeks. I was a grouch too and in order to have some level of domestic tranquility I hunkered down, did't share details of my misery and basically absented myself.  The family recognized it, knew and supported it. It had a beginning and and end - someday they would get me back.  
I surmise that you are not a selfish person.  But sometimes you need to be and those around you need to accept it and support it, even if they don't like it.  You all (the whole fam)need to go thru this together and it will be better for all if you're all on the same page.  Kids at 15 are more astute than you think and can find the facts, it's the emotional level-setting that's important.  The to-do list might get ignored, the social contacts may be limited and you may have some making up to do later on.  Your focus should be on getting better now so that there is a better you later.
We still haven't found the best way to tell the kids I relapesed.  That's still an unwritten chapter of this book.  Good luck 52.

[amirtracy]

I hear ya. Can't I just feel like cr*p without feeling like cr*p because I made you feel like cr*p???

I don't complain much anymore. I don't wanna hear it either.  I'm not as attentive as i usedto/shouldbe. But hey. I feel like cr*p. I figure I'll make it up to him in 30 weeks. Deal.

But then again I could just be having a bad day...

[Alady1620]

LOL... You sound like me earlier today.

[fishdoc]

Hey I'm with you, here a ****, there a ****, everywhere a crapcrap..... I've got to where when the boss walks in I wail "leave me aaallloooonnnnneeeeee".... hubby is OK, but he's being good.... don't ask about the day he said the wrong thing... evil morph....

[amirtracy]

Hey girls, if the shoe were on the other foot and it was hubby instead of me txing...i'd take it and deal with it. Like he does. Like you should. A famous poet from the 60's named Jagger said it best. "You can't always get what you want..."

[fishdoc]

OK, lets be real.  We have been married a long time, most of us? If the shoe were on the other foot, we'd have to just shoot em to put them out of our misery, cause we know men don't handle sick worth a ****, whether they're the sick ones, or we are, they are not nurturers so it is harder for them to be supportive, at least thats my opinion.  Don't believe me: holler honey will you come look at my rash again......was that the screen door slammin...

[Paris47]

Wow, this hits home, and I certainly can use this advise too.
Thanks for a wonderful post and wonderful suggestions.

[tulsatime]

Hey I enjoyed this thread, so much is true. No one else but someone that has gone through this, will know what we feel. The mental part as well as physical. The best thing is to not push yourself and don't feel guilty about taking time for you. Be honest with your partner. We will be ourselves again and life will return to normial. Some sooner than others. But in the mean time we have each other to vent our concerns and ask for advice. Take care and God bless us all