Please Help Me Explain to Hubby about How TX Makes you Feel...

Folks - I need some help.

My husband is really niave when it comes to HepC Side EFX on TX.

I try to explain to him how I feel... Tired, Achy, Headache, exhausted, mind fogged, itchy, sore, sleepy but unable to sleep, unable to lift up my arms or concentrate - like things are broken on the inside.

But what he sees is a woman, getting up and going to work - coming home and being just lazy - not able to sleep - but able to stare at a computer... To take my mind to another place to ignore the side effects. He thinks I should be able to run  around and vaccuum and do dishes and laundry.

He doesn't understand the mental stress, because I've always kept a happy attitude and tried not to let the side effects show to my family. Hearing it from me - doesn't sink in. I try to explain to him that some people can't even get out of bed daily to go to work. To him, I'm over exaggerating, because he sees me doing some things and not others.

Could I please get you guys to give him a basic rundown of your side effects? So he knows it's not just in my mind?

Any help in getting him to understand, that what I show him - the good side - isn't the real side - and in week 13 I really am feeling horrible. He is making some life decisions for us right now, and he needs to know

(His 17 year old son coming to live with us at week 18 of treatment *Ok - our responsibility*)

(His parents who are "NEAT FREAKS" want to come out for Christmas - and I can't handle that part - but don't want them to feel as though I don't want them there. Summer would be so much better!)

Thanks ALL!

[wagerwitch]

And might I mention - I'm on pegasys/copegus.

Just FYI platelets are down to 70, RDW is High, Lyphocytes Low WBC low, ast/alt high.

So any descriptions of what it is really like for others - would help.

THANK YOU - again

Wager Witch

[tipiwoman]

I understand where you're coming from for I am in the same boat with my flatmate.
I am in week 19 and I too feel like **** most of the time....ok sx.... I feel like someone has made a voodoo doll of me and are regularly sticking pins in, for I get the most horrible sensations over my arms, legs etc! The aches continue to move around my body and I suffer particularly with my knees....
Head aches...I'd like a $ for each one I've had in 18 weeks haven't had headaches for years! Appetite a joke! But have to push myself! Depressive thoughts...even suicidal thoughts some days...draining and debilitating on an energy level too! Sore throat, dry mouth,can't sleep, legs feeling like there is burning lead running down from my thighs to my toes...feet so sore!!! Was crying in bath each night at your stage!
And cleaning up, yeah forget about it! I would at this stage of your journey think of yourself and cancel Christmas if that is what is comfortable for you. You will only feel like **** having neat freaks around which will cause you more stress. Look after no 1 now!

It is very difficult for our spouces and loved ones to understand when we have been bright energetic people for years but he must now give you a break and shift his view. This is what marriage is hey in sickness and health! Good luck to both of you and your healing journey. Hope this helps a little. Blessings All.

[Lady E]

I'm so sorry to hear you are going through the non-understanding of your spouse as far as you sx. My suggestion would be for him to read through this forum and it might help him understand that you/he are not alone. Find a thread that discusses the side effects & problems that the sx cause, and sit down & read together. There are alot of spouses that post questions and problems to! It's not just the HCV patients.
As far as the holidays go...We always have Thanksgiving & Christmas here, and I've already discussed it with my hubby & kids (all over 21). First of all we have a rule in our house.  Whoever cooks, the others clean up..that's just a standard rule around here and I love it. Secondly, I told my stepdaughter, and in-laws that I am just not going to be "up to" doing it all alone this year. So I have our daughter planning on doing the mashed potatoes, and in-laws are going to bring a couple of other dishes to help me out.  Talking about this issue was painless, and they all understand. They are also informed about what I am going through right now. Also, I take my shot on Thursdays, and Thanksgiving is a Thursday, so I'm just going to take my shot after dinner that day & then relax for the evening. They also understand that sometimes I might excuse myself and go to bed early (usually around 8:30) Sometimes earlier if our young grandkids are being ornery & noisey. I thank God I have a family who understand whats going on with me.
But I can't stress enough what a wonderful support tool this forum is for us and our family. Take what you need from it, and skip what you don't need. Good luck to you!
E

[Lady E]

I also meant to say, that you should express to your husband, that you need his help around the house now more than ever before. It isn't going to kill him to help you clean the house before the holidays.  I had to ask my son (age 23, & lives with us) that I need more help from him.  He now takes care of the trash and cleans the upstairs bathroom for me once a week. I was having a hard time dealing with it all...it was just too much & the fumes from cleaning the shower was making me sick.
He does it for me and I'm very proud of him. I am also proud of myself for not being too proud to admit that I need help with some of the daily chores. :)

[timedog]

what does this say about the world or just husband wife behaviour. I have always wondered why there are so many wives who come on this site because their husbands are going through tx. but I have never read about a husband who did this for their wife.

My  girl friend has been pretty understanding but I am sure she gets fed up me at times. Hey that happened before treatment anyway. I have never found the right words to explain what I am going through to her. But I am sure if she spend a bit of time reading what other write here she would get it real quick

[torry1028]

Listen Hubby who doesn't understand Hep C....Hep C can make one feel terrible.  One needs alot of sleep which is when the liver does nost it's healing.  Someone with Hep C should sleep until the body wakes on it's own, not to an alarm clock.  That's when your wife will feel her best.  But she will never feel that young girl she once was with the vitality she once had.  If she does, it will be for short periods during a day. Fatigue can come on her suddenly. The fatigue can be so altering that often  we feel listless. There are so many symptoms it is difficult to describe.  The biggest problem is we do not always look sick so people think we are exagerating.  Same with doctors who do not understand.  If you don't look dead, then you are okay.  Hubby, you need to listen to your wife and help her.  Don't impose stress on her.  Stress only makes her more ill.  Take it from me, I've had Hep C for 35 years.  I am a widow, but it is Hep C the reason I never remaried,  I don't need the pressure. Pressure, stress and lack of sleep seems to
excell Hep C.  Let her sleep, let her be tired.  We often do things when we don't feel great, that doesn't mean we are well.

[painterlady13]

If you can get him to read more about the TX then maybe it will help him to understand just what the actual side effects are.  Be in Charge program sent me so much info both for me and for my partner.  I am trying to get her to read here from the group and to read what we all go thru.  Also the pamphlets they sent was very informative and explained the fatigue and the lack of ambition.  I still have problems here too though, I am on rescue drugs for low WBC and low Red blood cell (anemia) She doesn't seem to understand just what a low wbc means and that it is not me that can get someone sick but that a sick person can get me so sick that it will be 10 times worse.  Still working on that.

I really was amazed at the information that was given from that program.  you can sign up for it on line at beincharge.com they will send you all kinds of information regarding how to handle sides and what to expect from TX.  And they are keeping monthly updates and keep sending me info as time goes on.

[mycoldfeet]

Just let hubby read the warnings that come in the box with the Pegasys meds and the ribavirin warnings, I know it scared the hell out of me when I read it the first time, maybe that will open his eyes.

[NYgirl]

A very similar situation to what you said "But what he sees is a woman, getting up and going to work - coming home and being just lazy - not able to sleep - but able to stare at a computer... "

Is that in the beginning of treatment most people in my family were like OH NO let ME get you a cup of tea and while I'm there I'll make you some toast!!! and now I could be upstairs DYING and nobody bothers to come up and even offer me water.

Once they see us fighting HARD to go to work and TRY to keep on some regular LIFE they THINK errantly that we don't feel that bad.

They just don't get that we (women especially) are so so TOUGH and just because we are fighting through our symptoms and aches and pains and LETHARGY that is overwhelming...doesn't mean it's not there.

It is so hard for one person to explain to someone not going through treatment just how TREMENDOUSLY AND UNBELIEVABLY EXHAUSTING IT TRULY IS...you just simply can't explain it in words.

Maybe the best way to explain it is really - sometimes the shot effects are like the FLU and then aftewards it is like the five days you need to spend in bed to RECOVER from the flu. The aches and high fever might break from the REAL flu but you still are absolutely totally ZONKED from what your body has gone through - and it NEEDS to heal.

Have you had your hemo checked lately?  

Good luck, I pray really HARD that hubby "gets it".  Unfortunatetly, it's just so damn hard to explain it to someone who hasn't been through it.

Debby

[Kalio1]

Didn't you say in another thread that you are virtually symptom free? Now it seems you are saying something different.

[GrandOak]

Instructions on how to experience m8's sx of tx:

1) Upon rising in the morning, run a marathon, followed by a triathalon, followed by a biathalon, followed by other exercises until such time that your muscles feel like a gelatinous blob and you can barely lift your arms to scratch your nose.

2) Now take a solid oak 4x4 and proceed to slam your head against it until your head throbs in pain.

3) Next proceed to sit in a sauna until you have sweat running down your skin.

4) Jump into a pool of frigid ice water.

5) Repeat steps 3-4 each hour of the day

6) Repeat all afore mentioned steps for several consequtive days

[Forseegood]

Here's a letter that's gone around the various hep c sites...don't know if it'll all print but I'll copy it here, hope this helps

Letter to People Without Hepatitis C
Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.
Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.
Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.
Authored by Bek Oberin

[Lady E]

Ive been told lately by 5-10 people that I look great and also look 10 years younger.
Ok, I've lost 20 lbs since july, due to tx & also cut my hair because of tx. I say to them "Thank you for saying so!"  When at the same time, I am saying to myself "If they only knew WHY I look like I look"
I guess that's proof that we can disguise (to acquaintances) what we are really going through, when we actually feel like 10 pounds of $hit in a 5 pound bag.

[rosygirl]

This is a great thread.  My husband just doesn't get it either.  Or my teenage children.  He asks how I feel but gets taken aback when I tell him I feel like ****.  I too can lay in bed on the 2nd floor and could be dead for hours before anyone would know.  I have been starving and thirsty and cannot get up to get anything.  They don't understand how I could feel fine one hour and have to lay down the next.  My daughter can't stand the fact that I'm not the level headed rock she is used to.  She says I am being a bad example to my children with my behavior.  I can be almost normal a lot of the time and people think I'm okay, but still feel terrible on the inside.  I never feel normal, but when I'm feeling better I like to enjoy life.  It's so hard for my family to understand the ups and downs of the tx.  I, too, cut my hair and lost 15 pounds and people say I look great.  I cannot watch my 3 small grandchildren anymore.  The patience I once had is completely gone.  It's difficult to tell them they can't come over and everyone thinks I'm being difficult.  But I just can't do it.  I printed out the side effects for my 13 year old daughter and told her I need her help.  Hopefully she understands me better. My husband just doesn't know what to do with me because what worked yesterday for me may not work today.

[Forseegood]

I know I'm going way out of the limb here, but some of this is our fault as women...we do, do, do for everybody, and then all these people in our family think we're superhuman or something, and take it for granted that this will always be the case...course I'm not talking about EVERY women, but I just hear this over and over...

They become so dependent on us...it's up to us to make it perfectly clear that we are only human, and if we're nurturing and helpful, it's because we feel the need, but we're not indestructable...we break and become ill just like everybody else...let them do their own laundry, cleaning, cooking, etc. if you just can't...they go into a convenient "denial" about it cause it's convenient to their needs, they don't want to do this sh!t themselves...but if they have to, they have to, it's up to us to also make them independent of us if the need arises, so the house won't fall down if we have to lie down...I just think we need to convey these things to our families...

I shouldn't even talk in this category too much, as I've always been kind of a slacker compared to some of my girlfriends :):) but you know what I mean, part of our jobs is to launch them into independence...even the hubbies and boyfriends if need be!!! they won't break either!

[NuttiNetty]

I can really understand how this lady feels. My husband was like that too. We are no longer married. Don't let this happen to you!
I am presently experiencing these same side effects yet I have completed treatment 3 years ago. I have posted a question asking WHY!
I would like to thank everyone for their suport of one another!

[ejoli]

timedog- You have that right...If something was wrong with my husband I would research it throughly so I would know what to expect or what he would need from me. My husband comes home from work and wants his DINNER. It's pretty tough when I have been working myself and am TIRED!

GrandOak- I like your description. #1 run a marathon. #2 run it again.....

[mkeela]

OOOOOOH you are SOOO not alone. Nygirl really hit the nail on the head with...

"Is that in the beginning of treatment most people in my family were like OH NO let ME get you a cup of tea and while I'm there I'll make you some toast!!! and now I could be upstairs DYING and nobody bothers to come up and even offer me water."

HAHAHAHA...that is so true and real!! But I do have to say, I have a very lovely family, and they all try so hard to understand...I really feel for them, and couldn't ask for more. I will be praying for hubby to "get it" also, and in the mean time, PLEASE take care of yourself and know you can always come here for support from these wonderful cyber angels.

[ricochete]

GrandOak....that was one of the funniest most truthful things I have read in a long time.

The lack of support is so tragically sad. I'm so sorry that your husband doesn't get that you are a chemotherapy patient. What is up with the lack of understanding? I didn't get it while I was on treatment and I don't get it now when I read the struggles people are going through.

[GrandOak]

It's worse when somewhat trained people step away.

Today I took time off from work to help a blood drive at our church, since I am not permanently prevented from ever being able to donate I figured at least I can help.  When asked if I would make a donation, I informed them that I was unable.  When they asked why, I simply pointed to the disqualification sheet at the list item for Hep C, at which point she backed away from me as if I were some kind of lepper.  I simply shook my head and thought "How sad!".

[Pauly Boy]

Unfortunately, no matter how much information anyone gives you prior to tx, it's hard to fully understand what someone is going thru on tx. The first 2-3 weeks I felt great. After that the sx started. My wife forgot everything that we had heard from my doc about the tx, & the sx. It was like she never heard any of it!!! I got angry, she was frustrated. It wasn't pretty!
The best thing I can recommend is to get a book that go through everything, have him read it. I got one for my wife and we read it together, Quality Time LOL!!! We went back in to my doc for another discussion about tx , sx,: the types of things my wife might see in me as tx progressed. Have hubby read this MB, as well. Have him ask questions, he can get the info right from the horses mouth, no nonsense. Another thing I found was a HCV support group that was held once a month in a hospital near us, maybe you can find that.
I was told to cancel vacations, entertaining and other commitments that could interfere with tx, considering the possible sx. So I'd cancel Christmas this year and make it twice as nice some other time. It doesn't sound like it would be fun for anyone. I waited until I was able to take time off work if needed. Good thing, after a month I became a sleepaholic, I'm tired all the time. Everyone has a different reaction to these chemicals. One thing for sure is that they are VERY STRONG, what you are doing is aform of chemotherapy.
Do not feel guilty about your sx!!! That's just the way it is...
Keep the Faith.    Pauly

[Kalio1]

I too have had people tell me I look great on tx. Hard to believe a compliment can be so aggravating but when our outside doesn't reflect how you feel inside as you all know, it isn't the same. I was very sick prior to txing from the virus so maybe I do look better, feeling better is another story.
The comesy goesy nature of the side effects and the unpredictability of them is such a pain! It gives those around us the wrong impression. My husband would say " oh good you feel better!" and I'd say, I do at the MOMENT, give it ten  minutes!
People who have never done treatment have nothing to relate it to. It is up to us to explain to them what is happening, if they then choose to think you are "lazy" or doing a disservice to them or whatever, they are being really insensitive and unsupportive. DOn't do yourself the disservice of BELIEVING them when they say such things. I really feel for all of you who are dealing with this AND dealing with unsupportive families and spouses. What about the "sickness and health" clause? I have known a handful of people who have done chemotherapies for cancer and the main difference was they lost ALL their hair and I only have lost half of mine, other than that the symptoms are similar. As a matter of fact, the NP told me HCV tx was WORSE than many chemotherapies because of the duration. It is hard enough to deal with if you do have support. I hope you can talk to them and I hope they will LISTEN to you and give you the care and attention you need.

[sfbaygirl]

Today I was up early doing taxes and getting ready with a million medical deductions etc. Went to the tax lady and spent three hours there. I felt good most of the day. I guess I spent about 7 hours doing this today. I hit the wall when I was done. I could hardly eat lunch. I came home, went to bed and slept for 3 hours. I woke up with a fever and still feel like someone hit me with a Mac Truck. I was supposed to show my stepdaughter how to make chicken enchiladas and there was NO way I could even get up to sit down to the dinner John brought home.

I used to be able to sit down and relax after a trying day and my energy would return in a short while. Now it takes me HOURS to recover, once that Mack truck hits. I really don't know how those of you that work full time do it!

Thankfully my family is supportive. It does get old for my husband, but he has been a real trooper.

[Trying2BSupportive]

I am going through the same thing as your husband, trying to understand what my boyfriend is going through.  It does not get better, once the tx is done, I am sorry to say.  This forum has really helped me, though.  My boyfriend has been off meds for about 5 months now and although, he is less confused, he is still very tired.  I hope your hubby really reads what everyone says and understands.  I wish there were more support groups for everyone.  I understand what he is going through, too.  It is difficult for us (families), as well.  We want the same person back, but it will get better with time.  Hang in there and remember "in sickness and in health".  I do agree, also, that you should cancel Christmas at your home, unless everyone can be supportive and help out ALOT.  You don't need the stress.

[jmjm530]

At first, friends and family let me kmow they were there for me. "How are you feeling", "Can I bring anything over for you", "Do you have any errands I can run", etc, etc.

Slowly but surely the phone stopped ringing as much as the offers of assistance became less and less. After three months they didn't even ask how I felt anymore.

Last week I was out to dinner with a relative and remarked how wonderful it was to be able to eat all these things I was unable to during treatment because of my various problems. Silence. No response. As if the person didn't even want to acknowledge I had been sick.

Sick? Treatment was the hardest experience in my life and made a lot harder by those who failed to acknowledge what I was going through. I really wasn't looking for "help", just understanding. I now realize that is too much to ask for from most.

Hopefully your husband will read this and try and break free from the mold.

All the best in treatment.

-- Jim

[GoofyDad]

I went through a similar experience. I considered posting as you did here, but upon reflection I decided that the issue was not that the person in question lacked evidence that I was feeling sh!tty -- that was pretty obvious I think. No, the issue was whether she chose to accept the reality of what was happening, or chose to deny its existence. I came to understand that attempting to force her to see that which she didn't want to see would only build walls, not bridges.

Your mileage may vary, but that was the conclusion reached by this emotionally inept hack.  

[wagerwitch]

From OAK:

"Instructions on how to experience m8's sx of tx:

1) Upon rising in the morning, run a marathon, followed by a triathalon, followed by a biathalon, followed by other exercises until such time that your muscles feel like a gelatinous blob and you can barely lift your arms to scratch your nose.

2) Now take a solid oak 4x4 and proceed to slam your head against it until your head throbs in pain.

3) Next proceed to sit in a sauna until you have sweat running down your skin.

4) Jump into a pool of frigid ice water.

5) Repeat steps 3-4 each hour of the day

6) Repeat all afore mentioned steps for several consequtive days"




OMG - Thank you for the laugh!!!

And everyone - thank you for the information as I will share this with my husband.

He's great - he does the housework and is a wonderful husband and father... He just doesn't understand. And I can "HEAR" the implied sigh and look when he is wiping off the counter or doing the dishes - when I'm wrapped up in a blanket on the couch with the fan blowing in my face - LOL!

I can handle the Teen moving in  - But I truly can't handle the In laws coming. I don't have the energy to white glove my house that hasn't been white gloved in 2 years because I've just been practically dead - and not seeing a future with lots of energy - regardless of ownership in Starbucks. *GRIN*

So - super thanks for the laugh and all of the advice.

Wager Witch

[rockymoe]

I am on my 8th treatment. My husband has always stood By me. But I knew he didn't really get it even after reading all the material. Then we went to a hep c conference and that helped. I printed off the letter to those who don't have help c. I am on triple tx with vic and have had a really hard time with it. The other day he said it's almost like your taking poison. I said I think you finally truly get it. He said I will never know how you feel but I'm trying. I love this man

[Livinontheedge]

Letter to People Without Hepatitis & Liver Disease

Having Hepatitis means many things change and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me... Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain or extremely tired or that I'm getting better or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you. Please understand that HCV  is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, Hepatitis may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with Hepatitis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.

Written by another warrior of the storm

[his3707]

have him read my journal from about shot 2 on.  

[redsurfer]

hey how bout you give him a shot of that interferon and then ask him to clean the toilets and make you a nice big dinner after being at work all day...haha that l do it.. ill send you one of mine if you want

[his3707]

o heck have him go back all the way to 1st day on treatment in the journal.  have him read a lot of the posts about how people are feeling someone wrote a good post about being a caregiver and what the person is going through on treatment.  It wasnt the recent one in particular but one several months ago.  I need to try and find it.

[redsurfer]

but you have to promise to videotape it

[can-do-man]

Something tells me wagerwitch is done treating, at least i hope so since thread is 5 years old...........:)

[dixiechicdana]

I had a hard time explaining to my ex also. He is my ex because of this illness even though I didn't want that. He stayed in denial when I couldn't and expected me to be more than I could. But to your husband here goes:

I can only tell you how myself and most of us feel. The best way to explain the way it feels is like having a really bad hang over with the flu 24/7. Many have to go to work cause the alternative is not getting treatment due to insurance but it is harder than I can imagine. Guess again, it would be like working with a nauseating hang over. I am nauseated 24 hours a day. I cleaned my kitchen 2 days ago and I cleaned for 15 minutes and had to sit 30. The next day I was wiped out and spent most of the day in bed. I have to sit in front of the stove  to cook instead of stand, and it nauseates me to even smell the food. My legs feel like they dont have any bones in them to keep me upright and I never know when I will just pass out or fall. I have muscle aches, constant bathroom with pain and itching, headaches that don't go away, everything tastes and smells like crap. I sit at my computer a lot because the one thing I can do when I am not laying is sit. Our minds are weak and foggy. I am temperamental most of the time. I don't like being messed with. I tell my daughter and others, "what happens if you mess with a sick dog"? You get bit. The worse part of that is most people give the sick dog more sympathy. Just let the dog be he is sick...I never get that from anyone and I am a human. I cry at the drop of a hat, get frustrated easy and if challenged will bite like that dog. I don't mean to but Im sick. I am sick and the world expects me to go on as usual...the answer is NO. Not because i don't want to, it is because I can't. I'm not taking care of kids or family...they need to take care of me right now. If the house isn't clean it just isn't.
This treatment is saving us and killing us at the same time. It damages your organs, lowers your red blood cells where you are weak and can't get enough oxygen. my 80 year old neighbor does better than me and I am 48. Please try and understand that your wife doesn't feel good at all. she is very very sick. just because she must go to work she does but i guarantee she is counting the minutes away until time to go home. It is only a short time to have to go without things like they were but I bet she is worth it. I wish my ex would have thought so. we were together 18 yrs and treatment destroyed us several years ago and that treatment wasn't near as bad as this one. I hope this helps you to understand and please don't think i am coming down on you because I'm not. I know it is hard to understand. good luck to you both :)

[his3707]

They need to make that hour glass bigger or even have a beeping sound for old threads.  This however is still pertinent. humans dont change much.  My husband and I might not make it thru this together.   I got a real feel of what I am apparently thought of.  I dont buy any of the baloney.   It was only the first 3 months family that would have made all the difference for me.   I probably should have been in assisted living or a nursing home.  Now that I am up and around I am resentful and bitter for the way I was treated.  

[dixiechicdana]

unfortunately, that bitterness doesn't go away...at least for me it didn't. I knew that when things got tough, I would always be alone even though there were people in my house (my ex). I am hardcore about some things, but i didn't want to waste the rest of my life with someone I found out wouldn't support me. I would picture 10 years down the road and perhaps losing a leg or something maybe a stroke that left me only half mobile...didn't think I wanted "him" there. He would just dodge out anyway. I deserve better. I had a boyfriend this round and he kept me so stressed out that in my heart i believe that is why I wasn't und at 4 weeks. he was mentally abusive and I just got rid of him too. I would rather be truly alone than have someone in my house and still be lonely. Probably should be more positive for you but then I would be a liar...sorry.

[Dee1956]

Hi the other day I found a post titled something like "To the people who don't have Hepatitis C"  I thought it was so good.  I was going to email it my family.  Unfortunately MH deleted that option so I could not email it.  I hope you can find it, it was very informative, I will try to find it

[JasmineT]

I should start by saying i am so furtunate.  My husband is always supportive.  He may jot be mister clean but he has never expected the world to revile around him either and knows how to do the wash, cook dinner, etc fir himself and me if needed.  I do not complain to him and just tell him what i can or cannot do.  I could see at times he did not realize, probably because i do not complain or talk about it to him. No point, he cannot fix it and would worry and certainly cannot understand.  No one outside this forum or at least outside this "club" can.  He has heard me talking to my sister on the a bit when she was trying to be encouraging and i was not up to it, i tried to explain how it felt to her, and i noticed more of a conscious effort to watch out for me now at time.

I hate to past this information because i do not want to discourage people.  It is hard though  We are all managing so its not impossible and it's certainly not as bad as those who have strong chemo and radiation where they come so close to death, lose all their hair in a week and are hospitalized for long periods.  Still, some of you on this site are so strong i cannot even begin to voice how much i admire your courage and strength.  I know to others I look like me but I am not myself at all.  So here goes, i will try to describe.

Every individual cell, every atom in my body, not my muscles, the very cells that make us up are individually humming, shaking, and unstable, feeling as if they are all individually and simultaneously at risk of losing all solidity and dispersing.  I am trying with every breadth and every moment to hold on to self.  Everything feels like it's weak and shaky.  My back hurts my head hurts my muscles ache often but always it's the cellular level that threatens to nova, making me naseous.  I can almost see the aura of nausea and instability all around my self.  The taste in my mouth is horrid and constant.  Candy or sweets make me feel worse, i am so sick of eating fat.  There is no moisture in my body, my eyes often hurt and my tongue swells. My body screams for water and i am sick of water.  My brain cannot keep up with life's pace, the thoughts have trouble traveling through the unstable nerve cells, they pause and stop midstream until something bumps them forward eventually and other times just get lost get lost.

It all I can do, in very limited moderation, to take a shower, eat food, get out of bed, hold a conversation and continue to poison my body with these medicines daily.  When I can get moving I move at 20% the normal pace and it takes all the energy and focus I can muster.  My head is dizzy.

Your husband will think this is not how you are, he cannot see it, no one can see it in us too, but it is there, a constant for our existence as we count each shot and each week straining towards the goal so we can be alive again.  Trying desperately to try to do some of the normal daily things in our lives at this crawling and crippled pace so we do not lose our jobs and our homes by succumbing to the rest our bodies scream for.  Taking each day and each moment as it comes looking forward always to the finish line

Company is out of the question.  You often cannot handle voices, certainly not activity other than a small percent of the normal daily easy activity, you certainly cannot play hostess or clean as you normally would or be sociable.  You will struggle with anger and rage especially when the activity of others starts to wear on you and you cannot just crawl into bed, which is the only thing you want at almost all hours of the day.  You cannot handle the stress of the company of others.  You need to take care of you and so does he if he is your partner in life.  Perhaps he can visit his parents instead, you can handle a few days alone if there are groceries in the house.

I worry you may not make it if you cannot find a safe and quiet stress free space for retreat.  Often in life we put everyone else first and there are some that start to selfishly expect and demand this from us.  You may not be here if you do not make yourself put yourself first now.  Do not lose yourself.  Your life has value and there is much joy to come well worth living for.  

If you cannot find a safe place at home for healing in this time of need, I have to agree with what some others have mentioned, maybe your home is not where it should be, at least for now.

I am going to go think about more positive things now and try to take my mind off how I feel physically  God bless you and hope some of these postings help you find what is needed to make yourself a home which can be a place for healing and love.  

[dixiechicdana]

This touched me very deeply. Thank you for your honesty and description.

[Dee1956]

I came across this back before the recent MH updates, I wanted to email it to myself so I could then email to my family members who think I need a nap because I am bored  The "email this" is no longer available so I will try to print the letter and send to the people who don't understand what is going on with me and why I am so lazy, or why I need to take a nap in the afternoon, or why my legs hurt so bad.  I do the best I can and someone who is supposed to be the closest to  their daughter thinks she is bored or lazy
I am a 2/4 and while I worked through the first trial, I know I could not do it now while on the Incivek, perhaps after I finish the Incivek
Thank you all for your understanding.  To me that is key, to be understood and not be called names
Love
to all, hang in there
Dee

[Dee1956]

Me again the confused one, the letter that I tried to tell wagerwitch about was in this thread DUH
This may be an old post but it is even more relevant now than back then
Bless you all

[slagle2]

When I treated with SOC eight years ago my fuse was extremely short and I would lower the boom on anyone who gave me a hard time.  My wife of twenty years chose that time to do some things that were no helpful and all this brought on the only real trouble we have had in all these years together.  That same year an old friend did some stuff that he need not have done and I went ballistic and banned him from my home.  In more normal times we would have worked things out.  And I say all that as someone who tolerated the treatment relatively well.