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Being supportive of someone on Interferon/Riba Treatment
I'm logging in for the first time thinking perhaps I can find some good advice here for someone who is a partner to someone having treatment for HepC. I don't know if there is a special part of the site for folks who are trying to understand the treatment -- not having the treatment.
My partner is starting Week 6 of treatment today and has been having a wide array of side effects. Not just muscle aches, ringing ears, migraine, pain but also reports feeling oddly muted, as if he is outside himself. He has lost interest in the things we used to do. We used to go on hikes and take daily walks. I really do understand that he can't do as much, and the weather has been really cold. He gets chills easily. He's lost his libido response. Although he can have an orgasm, he says it feels odd, as if it is outside himself.
Two things. I believe him implicitly. He is a very loving caring person. He just seems to be slipping out of enthusiasm for life but doesn't seem depressed exactly. I am searching for words to describe it and coming up short.
I knew that it would be difficult and am prepared to be with him to end of the treatment whatever happens but I suppose I'm feeling that this treatment has affected my life as well. At least our life as a couple.
Has anyone else dealt with this?
My partner is starting Week 6 of treatment today and has been having a wide array of side effects. Not just muscle aches, ringing ears, migraine, pain but also reports feeling oddly muted, as if he is outside himself. He has lost interest in the things we used to do. We used to go on hikes and take daily walks. I really do understand that he can't do as much, and the weather has been really cold. He gets chills easily. He's lost his libido response. Although he can have an orgasm, he says it feels odd, as if it is outside himself.
Two things. I believe him implicitly. He is a very loving caring person. He just seems to be slipping out of enthusiasm for life but doesn't seem depressed exactly. I am searching for words to describe it and coming up short.
I knew that it would be difficult and am prepared to be with him to end of the treatment whatever happens but I suppose I'm feeling that this treatment has affected my life as well. At least our life as a couple.
Has anyone else dealt with this?
Thanks FIGuy, the acronym list helps!
annieCinMD, thank you for your note and best of luck with your treatment!
jt57, thanks! I suspect that 'waiting for the day our lives are normal again' is the case for many on this treatment along with their partners/spouses.
mkp13, thanks for the update on post-treatment. We are just trying to figure out how to make it through treatment at this point but also glad to hear there is life after treatment and that it takes some adjustment too.
Thanks All, who have posted. I'm generally good about responding to people individually but to be honest, there are so many replies. Thanks many times.
annieCinMD, thank you for your note and best of luck with your treatment!
jt57, thanks! I suspect that 'waiting for the day our lives are normal again' is the case for many on this treatment along with their partners/spouses.
mkp13, thanks for the update on post-treatment. We are just trying to figure out how to make it through treatment at this point but also glad to hear there is life after treatment and that it takes some adjustment too.
Thanks All, who have posted. I'm generally good about responding to people individually but to be honest, there are so many replies. Thanks many times.
I'm female and 5.5 weeks post-treatment. Yes, these drugs make you exhausted and make your body feel very weird. Some days my skin was so sensitive that touch felt bad. I couldn't stand scratch fabrics and sex was at best tolerable. I had almost no libido. What did matter was that people around me cared. Light touch was good. It was also important that people understand that my digestion was a mess, so if I turned down their cooking it wasn't because they were a bad cook. I just felt rotten. Many things I normally love didn't seem like "food" for those weeks.
Though this is way in your future, don't expect all this to get better instantaneously when he finishes the drugs. Some things get better fairly quickly, but many don't. Ribavirin takes many weeks to clear the system. I'm sorta feeling mostly myself again at week 5.5, but in some ways I'm not.
My strongest recommendation to any partner is to just be there when your partner wants someone to lean on. Be willing to leave them alone and go do things for yourself if that's how they want it. And don't assume that the person you loved is permanently gone. They'll probably come back once the drugs are out of their system.
Best wishes.
Though this is way in your future, don't expect all this to get better instantaneously when he finishes the drugs. Some things get better fairly quickly, but many don't. Ribavirin takes many weeks to clear the system. I'm sorta feeling mostly myself again at week 5.5, but in some ways I'm not.
My strongest recommendation to any partner is to just be there when your partner wants someone to lean on. Be willing to leave them alone and go do things for yourself if that's how they want it. And don't assume that the person you loved is permanently gone. They'll probably come back once the drugs are out of their system.
Best wishes.
Hang in there with him. It is really so hard going through this tx. My partner has been great, and there have been times I felt he was being TOO great! Times I just wanted to be alone.
I am a vampire, not dead, but certainly not a part of the living.
I know this affects my partner, and I will love him forever for hanging in there with me. This is so hard for everyone.
Waiting for the day for our lives to be normal again!
Jean
I am a vampire, not dead, but certainly not a part of the living.
I know this affects my partner, and I will love him forever for hanging in there with me. This is so hard for everyone.
Waiting for the day for our lives to be normal again!
Jean
I have a friend in another state who beat the virus about 7 years ago, and she shoots me an email every weekend just to see how I'm feeling since I've started treatment. It really means a lot to me. My life doesn't consist of much except going to work and school and bed. I'm really fatigued, even though I think I'm probably tolerating the stuff better than most folks. So, those of you who are supporting someone going through treatment, keep it up, it does matter, just knowing someone is thinking of you.
If you look to the right you'll se a section call 'Most Viewed Health Pages'. Within that you'll see 'Common Hepatis C Acronyms'. It will help you interpret the posts a little better.
My apologies but I had a little trouble figuring out how to log back in and am finally here. I appreciate all responses above. Not sure how it makes me feel though. He is in to week 6 of 48 (or 24 depending on his response). At this point, it is hard to imagine a whole year of this kind of treatment.
I don't know what TX means or a lot of the acronyms everyone is using but I will be reading along and trying to figure things out.
I can see where reading this forum will help me understand how its working for him. Like any of us who have ever experienced pain, I want to fast forward through it to the good health at the end of the tunnel. I've never experienced longterm treatment like this but have been with my mother through several bouts with chemotherapy. Thanks to the person who made the analogy of chemo to interferon treatment. That is helpful.
I don't know what TX means or a lot of the acronyms everyone is using but I will be reading along and trying to figure things out.
I can see where reading this forum will help me understand how its working for him. Like any of us who have ever experienced pain, I want to fast forward through it to the good health at the end of the tunnel. I've never experienced longterm treatment like this but have been with my mother through several bouts with chemotherapy. Thanks to the person who made the analogy of chemo to interferon treatment. That is helpful.
Sex? lol.
I read and watch tv, do crosswords to distract me and go to work two days a week which is hell. My lovely partner does all the cooking, cleaning, house repairs, shopping, runs after me - brings me my pills, my water, listens to my whinging and moaning, never gets to go out any more, is bored stiff. Without him, I couldn't do it - you partners are so much our support and our love and sometimes I could just cry thinking about that level of support we need to get through this. We are planning a (short and expensive) holiday in Paris when all this is over - things like that keep him going as much as me.
I find the movies manageable but no socialising any more - just can't sit up and be nice for that long.
My partner hates the med help obsessional thing but it is the only way we can understand what might be happening to our minds and bodies and learn to compensate for it. I do have to stop looking sometimes because it freaks me out. I am week 20 - much easier than the first 12 weeks as I feel better and understand me more and make adjustments to what I do.
Anti-depressants and sleeping pills, anti anxiety meds - couldn't manage without them.
I read and watch tv, do crosswords to distract me and go to work two days a week which is hell. My lovely partner does all the cooking, cleaning, house repairs, shopping, runs after me - brings me my pills, my water, listens to my whinging and moaning, never gets to go out any more, is bored stiff. Without him, I couldn't do it - you partners are so much our support and our love and sometimes I could just cry thinking about that level of support we need to get through this. We are planning a (short and expensive) holiday in Paris when all this is over - things like that keep him going as much as me.
I find the movies manageable but no socialising any more - just can't sit up and be nice for that long.
My partner hates the med help obsessional thing but it is the only way we can understand what might be happening to our minds and bodies and learn to compensate for it. I do have to stop looking sometimes because it freaks me out. I am week 20 - much easier than the first 12 weeks as I feel better and understand me more and make adjustments to what I do.
Anti-depressants and sleeping pills, anti anxiety meds - couldn't manage without them.
My husband took a shot tonight and only has two more to go to complete his 48 weeks of TX. I can tell you this has been a long year for both of us and that we will both be thrilled when TX is completed. I think this has been the hardest year we have ever endured. I have cried numerous times over the year but try not to let my husband know because he was already fighting bouts of depression.
We have only been outside the house socially maybe 3 x since the beginning of TX. When he had the sex drive he didn't have the energy now that he is gradually getting his energy back his sex drive has slowed down. My only advice is be patient and understanding. Unless you have lived through TX or watched a love one go through treatment the outside world just doesn't get it. My husband is being treated for both HB and HC. He was unable to work for about six months and working takes everything out of him.
He often felt like he could not form complete sentences and was confused most of the time he just felt paranoid to be around other people and little things would frustrate him. Let me explain my husband is the most lovely patient person on the face of this Earth but treatment has left him with a short fuse. Don't get me wrong he wasn't violent or anything but I could tell he was so frustrated. He never wanted to take anti-depressant's so he really has done this the hard way. I am so proud of him because I know he has been miserable but he never complained much even though I know he was constantly in pain.
I went for months almost the entire time wondering if I was ever going to get my husband back. Many nights he didn't want to talk, lost interest in everything from TV, sex, surfing the internet, eating etc. He was obsessed with gaining info on Hep B & C and Medhelp was his lifeline. He was miserable and just wanted to go into hibernation for a year. He lost a lot of weight and looks very sickly right now but they say when TX is completed he will gradually get back to "normal."
It will be a rough road for you, your spouse and family but know there is light at the end of the tunnel and know that getting TX now is the best course of action and that in the long run everything will return to normal. I am glad we are almost finished and it is the best feeling in the world. Hang in there it is a rough road but you will survive and return to the happy couple you once were. Best of luck.
We have only been outside the house socially maybe 3 x since the beginning of TX. When he had the sex drive he didn't have the energy now that he is gradually getting his energy back his sex drive has slowed down. My only advice is be patient and understanding. Unless you have lived through TX or watched a love one go through treatment the outside world just doesn't get it. My husband is being treated for both HB and HC. He was unable to work for about six months and working takes everything out of him.
He often felt like he could not form complete sentences and was confused most of the time he just felt paranoid to be around other people and little things would frustrate him. Let me explain my husband is the most lovely patient person on the face of this Earth but treatment has left him with a short fuse. Don't get me wrong he wasn't violent or anything but I could tell he was so frustrated. He never wanted to take anti-depressant's so he really has done this the hard way. I am so proud of him because I know he has been miserable but he never complained much even though I know he was constantly in pain.
I went for months almost the entire time wondering if I was ever going to get my husband back. Many nights he didn't want to talk, lost interest in everything from TV, sex, surfing the internet, eating etc. He was obsessed with gaining info on Hep B & C and Medhelp was his lifeline. He was miserable and just wanted to go into hibernation for a year. He lost a lot of weight and looks very sickly right now but they say when TX is completed he will gradually get back to "normal."
It will be a rough road for you, your spouse and family but know there is light at the end of the tunnel and know that getting TX now is the best course of action and that in the long run everything will return to normal. I am glad we are almost finished and it is the best feeling in the world. Hang in there it is a rough road but you will survive and return to the happy couple you once were. Best of luck.
Everything you've described is very normal indeed. This IS chemotherapy but unfortunately most people just don't view it that way. If your spouse was treating for cancer you would probably expect these type of things...but somehow when it's hepc it seems like it should be easier or something. We can definitely tell you it's not.
I treated for 72 weeks. I had good patches and bad patches. One thing you can be sure of is that lethargy will stay the course pretty much but other times your husband will have good days and bad days.....good weeks and bad weeks. The sides come and go and just when you sort of get used to one it will change to something else for you to figure out how to deal with.
Antidepressents were a life saver to me. I'd never taken any before but when the doc suggested I start one in advance of treatment I thought OK why not. While it didn't help me jump for joy or anything it did keep me from getting depressed. That is a reaction to the meds itself.....a chemical reaction. Then you have the mental part on top of the physical reaction and it can get really difficult to try and keep your head above water.
If he's not on them he should think about adding one perhaps. At this early time it would be good to see if it helped at all because he still has a long long way to go.
Good luck.
I treated for 72 weeks. I had good patches and bad patches. One thing you can be sure of is that lethargy will stay the course pretty much but other times your husband will have good days and bad days.....good weeks and bad weeks. The sides come and go and just when you sort of get used to one it will change to something else for you to figure out how to deal with.
Antidepressents were a life saver to me. I'd never taken any before but when the doc suggested I start one in advance of treatment I thought OK why not. While it didn't help me jump for joy or anything it did keep me from getting depressed. That is a reaction to the meds itself.....a chemical reaction. Then you have the mental part on top of the physical reaction and it can get really difficult to try and keep your head above water.
If he's not on them he should think about adding one perhaps. At this early time it would be good to see if it helped at all because he still has a long long way to go.
Good luck.
JT
" Since he is presumably nearing the end of treatment like FLguy said just hang in there. Not too much longer."
He's only his his sixth week and assume he has 48 wks of tx.
Concerned:
Sx you describe are very typical. This is an extremely personal experience and sometimes it's better to insulate yourself as FlGuy said. I don't take AD's, have treated 48 wks with 24 more to go and work everyday. I take care of my husband and my home and it's been extremely difficult but I have adjusted my lifestyle to compensate for those days when things are overwhelming. Hubby will find his nitch, where he's most comfortable. It's not going to be the same as before he started tx. I also live by the creed expect the unexpected and I'm not the same person anymore. Hopefully, I will get my life back when this is over but until that day I keep going forward and I don't look back nor do I have any regrets. This disease is what it is and the battle to rid ourselves of it can get pretty damn ugly but with determination and encouragement the battle can be won. Good luck to you and hubby and keep that chin up. You may not think he understands but he does. It can difficult to verbalize to others.
Trinity
" Since he is presumably nearing the end of treatment like FLguy said just hang in there. Not too much longer."
He's only his his sixth week and assume he has 48 wks of tx.
Concerned:
Sx you describe are very typical. This is an extremely personal experience and sometimes it's better to insulate yourself as FlGuy said. I don't take AD's, have treated 48 wks with 24 more to go and work everyday. I take care of my husband and my home and it's been extremely difficult but I have adjusted my lifestyle to compensate for those days when things are overwhelming. Hubby will find his nitch, where he's most comfortable. It's not going to be the same as before he started tx. I also live by the creed expect the unexpected and I'm not the same person anymore. Hopefully, I will get my life back when this is over but until that day I keep going forward and I don't look back nor do I have any regrets. This disease is what it is and the battle to rid ourselves of it can get pretty damn ugly but with determination and encouragement the battle can be won. Good luck to you and hubby and keep that chin up. You may not think he understands but he does. It can difficult to verbalize to others.
Trinity
Libido and being outside himself.....yep, I can relate. I don't feel that way anymore and I'm in week 11. But I definitely felt "isolated" and "grey" and felt like I didnt' belong around the campfire along with the rest of the kids. While they danced and enjoyed each other's company (something I normally would do) I wanted to just go sit on a log and distract my mind counting bugs.
You're doing great by researching and trying to be there for him. Just remember that it can get even worse, from what I've read on here, or he may adjust and he may feel better. I feel almost BETTER than I've ever felt. I would say that caffiene has helped me with energy and feeling more "up" and more approachable to others. At night, don't expect too much intimacy and cuddly time and his skin might be super sensitive, so caressing can be annoying. Lying close or sitting close might be fine, but in my case, I didn't want to be touched a lot with hands. Just something to look out for.
You're doing great by researching and trying to be there for him. Just remember that it can get even worse, from what I've read on here, or he may adjust and he may feel better. I feel almost BETTER than I've ever felt. I would say that caffiene has helped me with energy and feeling more "up" and more approachable to others. At night, don't expect too much intimacy and cuddly time and his skin might be super sensitive, so caressing can be annoying. Lying close or sitting close might be fine, but in my case, I didn't want to be touched a lot with hands. Just something to look out for.
I think it's great that you came on here to seek out answers for your significant others well being. You being concerned is an amazing thing. I just took shot 5 last night and still haven't had any real sx but the more I read I find that your current situation is not at all uncommon. It sounds like to me that your partner is experiencing a mild form of depression I.E. decreased libido and loss of interest of things that he used to do. Since he is presumably nearing the end of treatment like FLguy said just hang in there. Not too much longer. Sx for some people is a day to day battle and some days are worse than others. After his treatment is over then it will probably take a little while but he will be back to normal.
You're a good person obviously because you care and everything will turn out fine you've had a great amount of patience so just keep on keeping on. Everyone needs support a little differently. I need tough love, the second I think that this treatment is heading south my fiancé tells me to quit being such a Pu........Well you catch my drift :) and I snap out of it. Good luck and let us know how he does.
You're a good person obviously because you care and everything will turn out fine you've had a great amount of patience so just keep on keeping on. Everyone needs support a little differently. I need tough love, the second I think that this treatment is heading south my fiancé tells me to quit being such a Pu........Well you catch my drift :) and I snap out of it. Good luck and let us know how he does.
"I believe him implicitly"
At times during my tx, it was ONLY my partner who believed me implicity, and I will forever be grateful to his patience and trust in me (neither or which had been huge forte's of his prior!!!).
I had similar sx's to your partner and described it as having a "bubble around my head" - I did quite a mass hibernation, and got enjoyment out of the simple things. I simply couldn't relate think quickly or socialise as before. The paracetamol (once I started realising that it DID help) really aided the 'bubble' feeling, but I still took it very easy and kept away from visitors (or excused myself from having to put the energy into them by 'retiring' with a 'headache').
My partner did expect me to be perhaps bedridden, and was happy with what I was able to do (and I did have some good days, but even with those I was happy with my own and my nearest and dearest's company only). Anything else was too hard, and stressful, which was when I would start to be short-fused and find it hard to cope. I told my son it was like trying to function with a toothache or headache - not the same pain, but certainly the same sense of disability. Of course, everyone is different, but I very much relate to the sx's you are describing (plus some!) All the very best to you both; it was a joy to read your post.
At times during my tx, it was ONLY my partner who believed me implicity, and I will forever be grateful to his patience and trust in me (neither or which had been huge forte's of his prior!!!).
I had similar sx's to your partner and described it as having a "bubble around my head" - I did quite a mass hibernation, and got enjoyment out of the simple things. I simply couldn't relate think quickly or socialise as before. The paracetamol (once I started realising that it DID help) really aided the 'bubble' feeling, but I still took it very easy and kept away from visitors (or excused myself from having to put the energy into them by 'retiring' with a 'headache').
My partner did expect me to be perhaps bedridden, and was happy with what I was able to do (and I did have some good days, but even with those I was happy with my own and my nearest and dearest's company only). Anything else was too hard, and stressful, which was when I would start to be short-fused and find it hard to cope. I told my son it was like trying to function with a toothache or headache - not the same pain, but certainly the same sense of disability. Of course, everyone is different, but I very much relate to the sx's you are describing (plus some!) All the very best to you both; it was a joy to read your post.
Like yourself, I found this forum because my spouse has hepC (and several of its related complications). He is currently on week 14 of at least 48 weeks, possibly 72 weeks of treatment. I know I found lots of great information and wonderful supportive people here, and I hope you do too. Welcome to the forum.
Initially, my husband's side effects were some fever, a little fatigue, and a terrible rash. Recently, he's had loss of appetite, nausea, and generally feeling "lousy" and weak. He has been on anti-depressants since starting treatment, so his mood swings are medicinally tempered :) ... but the libido isn't swinging much at all these days. (Whether that is the result of the treatment or the ADs, though, is hard to say.)
I'm giving my best efforts to re-directing my 'sextra' energies into doing the things he's lost the energy to do around the house and yard. (And working out, too, so that the body will be ready and looking good when his libido returns :) ...)
Over the last few months, I've learned to expect the unexpected; be available when needed; and to be out of sight when necessary. (Working full-time keeps me from being underfoot, too.)
You said, "I am searching for words to describe it and coming up short..." which pretty much sums it up. It's difficult to know exactly what to do, when to do it, and to understand how he's feeling and what he's going through. (The medication dosing seems to be the only predictable part of daily life these days.) I try to keep focused on the fact that this is a temporary situation for a long-term solution and try to keep things as routine and low-key as possible.
There's no question that treatment is changing my husband's life, our life as a couple, as well as our life as a family ... but I pray, like most challenges we face, it will all be for the better in the end. Hope this helps.
Best wishes,
~eureka
Initially, my husband's side effects were some fever, a little fatigue, and a terrible rash. Recently, he's had loss of appetite, nausea, and generally feeling "lousy" and weak. He has been on anti-depressants since starting treatment, so his mood swings are medicinally tempered :) ... but the libido isn't swinging much at all these days. (Whether that is the result of the treatment or the ADs, though, is hard to say.)
I'm giving my best efforts to re-directing my 'sextra' energies into doing the things he's lost the energy to do around the house and yard. (And working out, too, so that the body will be ready and looking good when his libido returns :) ...)
Over the last few months, I've learned to expect the unexpected; be available when needed; and to be out of sight when necessary. (Working full-time keeps me from being underfoot, too.)
You said, "I am searching for words to describe it and coming up short..." which pretty much sums it up. It's difficult to know exactly what to do, when to do it, and to understand how he's feeling and what he's going through. (The medication dosing seems to be the only predictable part of daily life these days.) I try to keep focused on the fact that this is a temporary situation for a long-term solution and try to keep things as routine and low-key as possible.
There's no question that treatment is changing my husband's life, our life as a couple, as well as our life as a family ... but I pray, like most challenges we face, it will all be for the better in the end. Hope this helps.
Best wishes,
~eureka
"fretboard, so do people go 48 weeks without a flicker of interest? Or have the interest but not the will to follow through? I dunno. I know its a drug reaction he is having --- what I'm trying to do by writing here is educate myself by talking with people who have been through it. Both with the people taking interferon and their partners".
As far as 48wks without a flicker of interest goes, I don't know and I don't think anyone will be able to answer that question for you. At least in relation to your situation. However you have definitely come to the right forum to educate yourself. Stick around for awhile, you will soon know more about what both of you are gonna go thru and things will become clearer for you. good luck
As far as 48wks without a flicker of interest goes, I don't know and I don't think anyone will be able to answer that question for you. At least in relation to your situation. However you have definitely come to the right forum to educate yourself. Stick around for awhile, you will soon know more about what both of you are gonna go thru and things will become clearer for you. good luck
FlGuy, thanks for your response.
"That pretty much describes treatment for a lot of people. I found it easier to be a little more insular while on treatment, kind of 'leave me to my own misery'. "
That is his response too and its been a little hard to understand but I'm starting to get there. I really think that both of us hoped it was not going to be as difficult as it is, it seemed to start out slow but is building up each week. His response is to want to be alone. Mine has been to want to be there and 'care' for him. But I'm serious when I say I want to be here with him for the whole treatment and beyond, that's why i'm writing here. I don't want to put my own doubts about how its going to work, off on him. At the same time I am having doubts about how safe it is. Just read a whole website about how dangerous and ineffective interferon is. Well, I don't want to rattle all that off to him. He's taking the stuff right now.
fretboard, so do people go 48 weeks without a flicker of interest? Or have the interest but not the will to follow through? I dunno. I know its a drug reaction he is having --- what I'm trying to do by writing here is educate myself by talking with people who have been through it. Both with the people taking interferon and their partners.
Lapis, thanks for the welcome. I really feel your pain because that sounds a lot like what he describes: " I'm experiencing a lethargy and apathy that is very unlike "me." I feel so tired and uncomfortable in my own skin that I have absolutely no interest in sex." Even though we knew to expect side effects, still... the reality is much more serious and scary than the theory of it all. Like you say, no one really knows exactly what to expect. thank you for your words and all best for your journey too.
Connie, CMcH, Also thanks to you for your kind words. I am very worried but it really does help to hear from folks who are going through this treatment, perhaps a little further along the way than we are. I like what you said about 'the person you love is still in there.' I know that every day but its still hard to understand that the entire routine of our days has changed so fast and harsh. Still I will hold on to knowing that he is still in there and that true self will be back. I also want to say that he is the kindest sweetest person I know. That has not changed. If anything its just that he seems much more lethargic and definitely uncomfortable. He still tells me everyday how much he cares about me.
To All, many thanks. I'll be reading around.
"That pretty much describes treatment for a lot of people. I found it easier to be a little more insular while on treatment, kind of 'leave me to my own misery'. "
That is his response too and its been a little hard to understand but I'm starting to get there. I really think that both of us hoped it was not going to be as difficult as it is, it seemed to start out slow but is building up each week. His response is to want to be alone. Mine has been to want to be there and 'care' for him. But I'm serious when I say I want to be here with him for the whole treatment and beyond, that's why i'm writing here. I don't want to put my own doubts about how its going to work, off on him. At the same time I am having doubts about how safe it is. Just read a whole website about how dangerous and ineffective interferon is. Well, I don't want to rattle all that off to him. He's taking the stuff right now.
fretboard, so do people go 48 weeks without a flicker of interest? Or have the interest but not the will to follow through? I dunno. I know its a drug reaction he is having --- what I'm trying to do by writing here is educate myself by talking with people who have been through it. Both with the people taking interferon and their partners.
Lapis, thanks for the welcome. I really feel your pain because that sounds a lot like what he describes: " I'm experiencing a lethargy and apathy that is very unlike "me." I feel so tired and uncomfortable in my own skin that I have absolutely no interest in sex." Even though we knew to expect side effects, still... the reality is much more serious and scary than the theory of it all. Like you say, no one really knows exactly what to expect. thank you for your words and all best for your journey too.
Connie, CMcH, Also thanks to you for your kind words. I am very worried but it really does help to hear from folks who are going through this treatment, perhaps a little further along the way than we are. I like what you said about 'the person you love is still in there.' I know that every day but its still hard to understand that the entire routine of our days has changed so fast and harsh. Still I will hold on to knowing that he is still in there and that true self will be back. I also want to say that he is the kindest sweetest person I know. That has not changed. If anything its just that he seems much more lethargic and definitely uncomfortable. He still tells me everyday how much he cares about me.
To All, many thanks. I'll be reading around.
It is very hard on the family and can change the person that is TXing. The meds can wear you down so much that you don't have enough energy to feel joy. A lot of people take Antidepressants and for me even that does not really work. The person that is treating feels very uncomfortable in their own skin. Terrible headaches, achey ms/bones and itchy rash tend to damper the love life. This medicine can also leave you in a heightened state of irritability.
My kids weren't used to seeing me cry and my husband has never seen me so moody.
I would have loved to go away and live in a cave during TX. I tend to go up to my room right after work and put myself in time out.
My husband just told me yesterday that he didn't know wether to ask me how I am or leave me to "wallow". I said it is nice to ask how I am doing but don't try to fix it or ask me to shake it off. I would if I could. When I do feel good I try my best to do something special for my family and I try to push myself when I am not so good.
My heart goes out to you. I don't like being around me anymore.
Perhaps just ask him if there is anything you can do for him and if not take care of yourself. Do remind him that you deserve happiness too because this TX can be very self absorbing. Remember that time will pass and the person you love is still in there somewhere. Take care,
Connie
My kids weren't used to seeing me cry and my husband has never seen me so moody.
I would have loved to go away and live in a cave during TX. I tend to go up to my room right after work and put myself in time out.
My husband just told me yesterday that he didn't know wether to ask me how I am or leave me to "wallow". I said it is nice to ask how I am doing but don't try to fix it or ask me to shake it off. I would if I could. When I do feel good I try my best to do something special for my family and I try to push myself when I am not so good.
My heart goes out to you. I don't like being around me anymore.
Perhaps just ask him if there is anything you can do for him and if not take care of yourself. Do remind him that you deserve happiness too because this TX can be very self absorbing. Remember that time will pass and the person you love is still in there somewhere. Take care,
Connie
Welcome to this site! Yes, it is perfectly appropriate for you to write in as a partner of someone who's undergoing treatment, and I'm sure you'll find support here.
I'm in Wk 17 of my treatment and am certainly experiencing all the things you've mentioned. If you read other posts here, you'll see that many of us experience multiple physical, emotional, and psychological symptoms, including the loss of libido. These drugs are very potent and each of us has our own unique response to them. Some folks are "lucky" and don't get too many side effects, while others of us really have to alter our lives to deal with the symptoms we are having. I'm experiencing a lethargy and apathy that is very unlike "me." I feel so tired and uncomfortable in my own skin that I have absolutely no interest in sex.
I am certainly not myself, and I apologize to my husband for being cranky, easily irritated, etc. My grown daughter has even remarked, "Mom, you're changing, you seem different." I'm thankful that my spouse is supportive and just keeps on keeping on, even when I am difficult to live with. We both know this will be over sometime, and I look forward to resuming my life.
Your partner is fortunate that you care enough to try to get support for your situation. Hopefully other partners of folks in treatment will speak up as to their experiences also. Feel free to write anytime you need to vent, that's one of the ways we support each other here.
Hang in there, wishing you both the best on this journey.
Lapis
I'm in Wk 17 of my treatment and am certainly experiencing all the things you've mentioned. If you read other posts here, you'll see that many of us experience multiple physical, emotional, and psychological symptoms, including the loss of libido. These drugs are very potent and each of us has our own unique response to them. Some folks are "lucky" and don't get too many side effects, while others of us really have to alter our lives to deal with the symptoms we are having. I'm experiencing a lethargy and apathy that is very unlike "me." I feel so tired and uncomfortable in my own skin that I have absolutely no interest in sex.
I am certainly not myself, and I apologize to my husband for being cranky, easily irritated, etc. My grown daughter has even remarked, "Mom, you're changing, you seem different." I'm thankful that my spouse is supportive and just keeps on keeping on, even when I am difficult to live with. We both know this will be over sometime, and I look forward to resuming my life.
Your partner is fortunate that you care enough to try to get support for your situation. Hopefully other partners of folks in treatment will speak up as to their experiences also. Feel free to write anytime you need to vent, that's one of the ways we support each other here.
Hang in there, wishing you both the best on this journey.
Lapis
No I haven't dealt with it from that side, but I do have an opinion about it. Besides doing your best to support and understand what he is going thru I think you have to even go a step further. You're not gonna be able to see what's going on inside his body with him obviously, but if you read you could learn alot about what he is going thru.
If you just grab the drug inserts for the Pegasys and the Ribavirin and read them completely, they will help you to understand some of what he's going thru. Also, if you read around on this forum you can learn alot as well.
"He's lost his libido response". Please do yourself a favor and give the poor guy a break. lol I don't think very many ppl are gonna want to make love when they are going thru tx, and it's not you it's the drugs. good luck
If you just grab the drug inserts for the Pegasys and the Ribavirin and read them completely, they will help you to understand some of what he's going thru. Also, if you read around on this forum you can learn alot as well.
"He's lost his libido response". Please do yourself a favor and give the poor guy a break. lol I don't think very many ppl are gonna want to make love when they are going thru tx, and it's not you it's the drugs. good luck
That pretty much describes treatment for a lot of people. I found it easier to be a little more insular while on treatment, kind of 'leave me to my own misery'. Sometime escalating to 'get out of my face'. Most of the time it was 'hand me a blanket, a pillow, the remote and some Twizzlers and I'll be fine'. Treatment effects everyone around the patient. But you need to remember, it's tougher on the person taking the meds. Re-adjust your expectations if you are a concerned partner. Tell the patient 'good luck'. Assuming that it's a 48 week treatment there are only about 10 months left.
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