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problems with fatigue
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problems with fatigue

Hi. I need your help. I have been around for a few years and read but rarely post. I am 1a, stage 2 and grade 2. I treated for 48 weeks in 2005. I had a viral breakthrough week 24 but continued for the duration of tx. I am currently at week 16 of 72. I cleared at 12 weeks. I had a hgb drop from 13 to 10.  My insurance declined procrit and suggested that doses be reduced (not going to happen if I have any say).  I am physically exhausted and breathless much of the time. I am able to work as my job does not require physical exertion; however I have real difficulty with taking care of the house, cooking, etc. My husband initially understood and picked up the slack for me.  That understanding has come to an end as he stated that I need to get off of my “lazy a**” and help out.  Would those of you who have experienced anemia comment on the sxs and the severity of  the fatigue. I want to have him read input from you all and possibly this will help him be more tolerant and understanding. Thanks in advance!
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Avatar_m_tn
I used to park 100 feet form the door to my office. While I was treating I would pull into my space and just sit there trying to get the energy to walk across the street. Sometimes I would sit for 10 minutes because I was too exhausted to get out of my car and walk the 100 feet. Anemia is terribly debilitating go give your Wife some slack, please. Mike
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186606_tn?1263513790
Hi Hubby:
She is not making it up. This is a very terrible disease and the side effects of the treatment are terrible. She is trying and STILL WORKING TOO. I was fired for the fatigue and i was a boxer and marathon runner before the treatment started, so i was strong.

Please ease up. be there for her. if it were you, she'd do that for you.

deb
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Avatar_m_tn
When my anemia was bad under treatment, I couldn't walk more than a block without having to sit down. Cleaning the house and other physically demanding chores were out of the question. And that's just from the anemia. The fatigue from the treatment drugs themselves -- primarily the interferon -- can be debilitating all by itself. I give your wife a lot of credit that she is able to go to work every day because many of us, including myself, couldn't. The fact that someone doesn't *look* sick and tired doesn't mean they aren't. Don't want to be too critical of you because your reaction is pretty normal. I lost a number of friends during treatment because they just didn't get what was going on with me. As Mike says, try and cut your wife a little slack while she is treating. Treating with these drugs is a lot more difficult than it looks.

-- Jim
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Avatar_m_tn
Many relationships don't survive tx, lighten up or you will be one of them.  I had a great relationship prior to tx and now, sometimes I think, when this is done I'm gone. Treat us right.
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Avatar_f_tn
Indy,,,Sorry to hear you are having a hard time with the fatigue and I remember it so well,,,like I would pass out if I overdid!  I know its hard on our families,,,,,but they have to remember,,,,that this is only a year or 2 out of your lives in order to stop the virus and also remember to Thank God that their spouse have the opportunity to do it!  Many don't due to no insurance and tx too costly,,,its a small price to pay for SVR in my opinion so tell hubby to start waiting on you hand and foot LOL
Take Care Indy!
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Avatar_f_tn
Please, lighten up and give her all the slack she needs.  I worked during 48 weeks of tx and let me tell you it was extremely hard.  I only work 5 hours, 5 days a week, had to climb 20 steps to get to my office.  Had to stop several times trying to get to the top, had to take breaks before I reached the top. No physical type of work and when I got home it was straight to bed and pass out I was sooooo tired.  On weekends, (Friday Shots) I would sometimes not even be able to get out of bed.  One night I passed out going to the bathroom, ended up with a HUGH knot on my forehead at the eyebrow.  
If you give her slack now, your life after tx will be wonderful and no damage repair will have to transpire. It seems never ending, I know, but it does end and it is well worth that horrible, horrible year.  She at times (as I did) feels worthless and crazy and wonders what the hell is happening to her, and that would be normal, so she needs you to support her and help her.  
What my husband and I decided on was to have a housekeeper come in every other week on Fridays and clean my house.  That was the biggest relief for me and my family.  So, if you can afford it get her a house cleaner 2x a month and I promise you will be happy too.
I know you have it in you, especially if you love her. So come on hubby and show us how you can SHINE!!!!!!!  I see it , I swear I see that glow already:)

Cajun
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Avatar_f_tn
I remember waiting in line in a restaurant - and my hbg was only 11.0, not that bad - and I had to lean against the wall because standing was too exhausting.  Help your wife out, and get your friends to help her out too.  If you can afford it, pay somebody to help her out.  If you love her, she deserves it.
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163305_tn?1333672171
Indyjo's spouse:
      Would you tell your wife to get off her lazy butt if she had cancer and was doing chemotherapy? My doctor is doing HCV research work and is a liver transplant specialist. He said tx for HCV is like doing chemo. He encouraged me not to push myself. I spent weeks only getting out of bed to eat and use the bathroom. Fatigue is the most common side effect. You should help your wife. Put yourself aside, and take care of her knowing she may not be able to do so for herself for many weeks.
indyjo: Have you tried asking your doctor to talk to your husband?
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Avatar_n_tn
getting proper rest during trx is hard and necessary....this **** kicked my butt and i was an active,fit,stone mason with energy to burn...on trx i spent whole days&nites on the couch-NO WORK!! most exercise i got was too frequent trips to the bathroom....Give yr gal all the help you can muster,she is on a very tough trip....
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217229_tn?1192766004
Dear Hubby ---

Quit being a JERK.

Nothing personal but this is the way I felt when I was going through TX:

I couldn't summon the energy to click the mouse or type.
I couldn't think straight --- my brain would scatter everywhere and nowhere... It didn't matter how hard I tried to pull it together.
I felt guilty because I couldn't stand up to vacuum the house - hell I could hardly get up to go to the bathroom.
I hurt in every single bone and tendon and muscle.
I couldn't remember my middle name.
Everything ached at all hours of the day and night.
I had chills and sweats - my feet would be burning up while my body would be shivering.
Noise of a whisper would drive me into a massive frenzy... A fly buzzing would make me freak out.
I got angry at nothing - and couldn't really control the way I felt.
I couldn't eat anything that tasted good - and everything I ate made me naseaous.
I got cravings for strange things at strange times... But I still got ill --- one way or another.
I was depressed and sad for no reason - to the point where getting out of bed was difficult.
My body wouldn't do what I wanted it to. I couldn't lift the damn remote control to change the channel... and by the time I got my hands to pick it up --- my head hurt so bad I didn't give a flying flick about what was on.
I could sit and stare at nothing ---- without even realizing I was staring.
My train of thinking was off track - I couldn't force it back --- nothing worked.
I couldn't carry on a decent conversation - and forget about remembering what I just said.
Today you could ask me how I feel - and 20 seconds later I could be feeling differently.
PROPER REST --- Ha...  I couldn't sleep sometimes --- and at others I could sleep for 48 hours...
Energy? NONE.
TEMPERMENT? I'm a happy go lucky person - I'm very thankful I kept my humour. I was a total wreck.
GUILT? Oh yeah... Cause although I wanted to help around the house --- I couldn't. I COULDN'T.
SEX? Hmmmm well let's just say my hubby's right arm is a little bigger than his left at the moment... LMAO! It just isn't in the cards dude...
Go out in public? Freak no... First I looked like a heroin addict, my hair falling out, my chin hairs, dark circles under my eyes, couldn't breathe --- couldn't stand up or stay seated upright for that long... and everything made me sick...
Oh and did I mention that the medicine plays with your hormones too? Oh well hey --- how would you like a period every 15 days that lasts 10 days --- and is heavier than you've ever experienced before?
Oh --- and while we're on that subject --- the bathroom stuff... My hubby, realizing I was having a difficult intestinal time --- was wonderful enough to buy me a heated seat, warm water, electronic bidet... Think about what that implies...
Wash dishes? Are you nuts?
Work? Well - if I could remember what my boss asked me to do 3 seconds after he asked me --- and if I could remember how to organize stuff - I would be fine... But even 6 months POST TX... I have to write sticky notes and seriously try to remember how to file and do things that require specific thinking.

Go get run over by a mack truck ---- then tell me you're going to wash dishes... It's comparable.

You fall off a 25 story building onto concrete and tell your wife you're ready to hop in the sack for some excellent whoopie.

Just because YOU can't SEE what I'm feeling - doesn't mean I'm not feeling it.

And if your wife has the patience to go through this nasty - horrible treatment that affects EVERY SINGLE part of your body (MIND, BONES, MUSCLES, TENDONS, EMOTIONS, MEMORY, CIRCULATION) Then you DAMN well have the patience to take care of your wife for the next year and a half.

What a jerk.

Have you bothered to read any other forums?

Have you bothered to ask what THIS TREATMENT feels like to other people?

Have you bothered to see anywhere what Interferon and Ribavirin does to people?

Just because your wife looks like your wife --- but looks like she's a bit haggard... Does not mean that she's not feeling horrible inside.

Go hire a maid.

Get some help from friends or family.

Get church folks to help you out.

OR LEARN TO IGNORE THE MESS --- AND ENJOY IT.
Don't complain about it.

But lay off your wife... Because obviously you have no compassion or understanding for the reality of the situation.

This stuff is nasty to the body, mind and soul. Have some love, compassion and understanding.

You certainly wouldn't tell a person going through Cancer Chemotherapy to get off their duff and work... Now would you?

Well here's one for you.. Interferon IS Cancer Chemotherapy.

Did you know that?

Well - go do some research and learn.

And then hold your wife close ---- if she can handle anything touching her skin at the moment.

Tell her you love her... And you're darn sorry.

Because she's doing this for you.

And it's like walking through the pits of hell.

Meki

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217229_tn?1192766004
In fact --- Why aren't you putting up the money to buy your wife the darn Procrit? She needs it - and just because insurance won't pay for it isn't good enough ---- go sell your hobby collection or whatever it takes.

Your wife is Amazing for going through this not only ONCE --- But Twice... and not knowing if it's going to work.

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217229_tn?1192766004
I now return this station to your regular broadcast of humor and fun.
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Avatar_n_tn
To indyjo's husband:
I don't have Hep C either - so we have something in common.  My BF has it and is in treatment.(I registered for this forum just so I could talk to you!)  He is very fatigued and still works fulltime and has to travel some also.  We live in different states (pretty much all the way across the country) and I only get to visit periodically for a week to ten days at a time.  I know it is impossible for us to "understand" how they feel so I just try to BELIEVE him when he tells me how he feels. He doesn't even feel like talking on the phone most of the time which puts a damper on a long distance relationship, but hey if you love someone............you do what you have to do.
My problem is that I feel helpless that I cannot do more for him.  If he would let me, I would turn my business over to my children and stay with him fulltime.  He would not even have to wipe his own nose if he didn't have the energy.  
So my point is this:  indyjo is your wife and she really needs you now and doesn't need the stress, trauma, and heartache of you turning on her at this time.  Be grateful that you are in a position to support her and do everything you can for her.  So what if the house is not as clean as usual or you have to eat out of a can?  If it bothers you - do it yourself or hire someone.  The big picture is what is important now - indyjo getting rid of this terrible disease.  Keep that in sight.  That is all that counts.
Just wanted to let you know that I understand that it is not always easy to handle it when the person you love is in treatment, but believe me we are the lucky ones and they need us like they have never needed us before.
So, get out of yourself (I have heard that before and am ashamed that I had to hear it) and focus on getting your wife well and then getting on with your wonderful life.
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Avatar_n_tn
You guys are awesome! I had him read your comments and he apologized to me. We discussed the hardship of treatment and he shared that he feels unappreciated and overwhelmed at times. I guess I forgot that this affects everyone in my family and not just me. We had a discussion!!  Your comments were so heartfelt and supportive and I felt that you guys really cared. Thanks to all.
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Avatar_n_tn
Great!  I am so glad to hear that you and your husband got things worked out.  It is so easy for both people in a relationship to get caught up in their part of the equation and not realize what the other party is experiencing.  Usually a good talk is all it takes to get things back on track.  
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85135_tn?1227293372
I heard the “get off your @ss” comment a few times on tx. After my wife found me sprawled on the stairs gasping for breath a few times, she eased up. I was able to feed and water the dogs and cats and maybe a few easy things around the house.
One of the worst points was when I’d go to the pet store and buy a big mound of food, I would have to have someone from the store to load it in the car. I felt like such a wuss.
My wife did become very understanding but for a few rough spots along the way.
I’m glad to see your hubby and you come to a point understanding about each other.

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