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

[wagerwitch]

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!

[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.

[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

[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

[dixiechicdana]

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

[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.  

[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

[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.

[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]

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 :)

[can-do-man]

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

[redsurfer]

but you have to promise to videotape it

[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]

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]

have him read my journal from about shot 2 on.  

[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

[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

[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

[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.  

[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.

[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.

[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.

[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

[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!".