Aa
Riba Rage advice
For those who are helping people go through treatment, what advice would you give future caregivers about dealing with heppers ribarage?
I probably worry about this the most...even though i won't mean to be mean, it doesn't mean it will hurt the other person any less...I have 2 teens at home with hormones of their own flying around and even though my partner has been through treatment, he hasn't been on the caregiver end of the process...I am guessing that is a whole other ball of wax!
I probably worry about this the most...even though i won't mean to be mean, it doesn't mean it will hurt the other person any less...I have 2 teens at home with hormones of their own flying around and even though my partner has been through treatment, he hasn't been on the caregiver end of the process...I am guessing that is a whole other ball of wax!
From what I've read, and from what I've observed a time or two with my husband, is that it's a combination of the extreme fatigue, not feeling well, feeling overwhelmed/frustrated, feeling irritable/depressed, and then all of a sudden someone says or does something that just triggers a "flash" of anger that is totally uncharacteristic of him. I could see it in his eyes, on his face, and you can hear it in his voice, that whatever that trigger was has just hit his overload button. I think this combination of circumstances just came together like the perfect storm to create that over the top, somewhat scary, anger/rage reaction. As I've mentioned in other threads, with his first two therapies, those rage moments happened a few times, I've handled them (setting/maintaining a boundary, giving him time/space, and then bringing it up later in a calm manner) resulted in either an increase in the antidepressant or an additional antidepressant), but this time (triple therapy) there has not yet been a need to increase or add. The one he's on has been just fine. With all 3 of his therapies, I would say that those few rage moments happened the first day or two after the first few injections, resulting in my Saturday or Sunday solo lunches out for a couple of weekends.
Advocate1955
Advocate1955
I wouldn't say pregnancy rage is like riba rage. When I was pregnant, I'd burst into tears. With riba, I get rabid.
I've found it hard to let go of things which I normally can let slide. Its like getting obsessed and angry.
But that doesn't mean you'll feel that way.
My guess is it effects people somewhat differently.
I've found it hard to let go of things which I normally can let slide. Its like getting obsessed and angry.
But that doesn't mean you'll feel that way.
My guess is it effects people somewhat differently.
Actually it is more the Interferon that causes this ,however " Riba Rage" sounds much cooler than" Interferon Rage"
Kinda like you want to tear someones head off ..just for the sake of it,,however not all get it really bad. below I believe is a woman who got a good smattering of it tho.... :0)
You will be fine....
Will
http://media.photobucket.com/image/angry%20woman/safetygirl79/angry_woman.jpg?o=2
Kinda like you want to tear someones head off ..just for the sake of it,,however not all get it really bad. below I believe is a woman who got a good smattering of it tho.... :0)
You will be fine....
Will
http://media.photobucket.com/image/angry%20woman/safetygirl79/angry_woman.jpg?o=2
is riba rage anything like pregrancy rage? I once cussed out Bill Walsh when I was about 8 months pregnant (on my second pregancy within a few months of each other, the 2 babies were 14 months apart)...I had been standing in line for 1.5 hrs to get an autograpgh and picture for my oldest son, legs tired, had to go to the bathroom something fierce...when it was my turn, one of his people put their hand in my face and said, "he's done for today, no more autograpghs"...I don't remember much after that...just some cussing and "oh no, you didin't just put your hand in my face!" Bill Walsh just rolled his eyes and said "ok, come on", ha...everytime I look at that picture I can still see the look of fury on face and I cringe, ha...
Wow in all the time you have been here I"ve never seen you lose it like that - and boy I can relate. Some folks are rude dumb idiots and they have no idea what a woman on ribavirin can be like. I always said thank God I didn't have a gun or all the blue haired ladies on the highway doing 20 would have been in big, big trouble (until I went to jail that is).
Hang in there.
Hang in there.
Thank you Advocate, it helps...I knew that hector is the one going through treatment and you are the caregiver...I think the caregiver goes through this processs every bit as much as the patient, it may be different, but none the less, you are going through it just the same...and both of you will be changed forever once you have completed this process...you two seem like a very strong couple, and it's inspirational, I hope that's how it will be for my partner and I...I hope it will make us and not break us...I think it will make us :).
Excellent advice, Advocate. Haven't experienced too much grumpiness yet (on his part that is, on mine - that's another story) but when/if it happens I'l use your approach and give him some space.
I am not doing treatment, my husband is. Third try for him. I've been with him every step of the way, but I've learned to go out and have lunch somewhere the day after the shot the first two weeks of treatment, find ways to give him control over things like what to eat/time to take meds/when to get up and then help with the rest, and look for milestones that are encouraging so he can have hope. It is hard to be the caregiver to someone who has always been able to care for themselves, so I have to figure out when he needs time to work it out, when it's a side effect that can be helped, and when to remind him that he's done this before and it will get better. When he's over the top, I tell him it's not acceptable, and then leave him alone to regroup.
Don't know if this helps.
Advocate1955
Don't know if this helps.
Advocate1955
I dont know what to say but will say it anyway. I am all over the emotional department. fighting mad/ and then twirling around talking my head off. I almost got my whol family in big trouble by beeping my horn at a rude man that cut in front of me at the place where you put air in your tires. It was obvious i was next in line, and the pansy man that I was waiting on took at least 15 minutes to put air in his tires. I had my blinker on everything. Then here comes this @%$#! and pulls around in front of me and strarts helping the pansy man. Ohhh I was extremely aggitated. My 16 year old son had to save us by tellin me I could say what ever I felt with the windows rolled up, but no more honking. He wanted to see tomorrow. I cant wait till this is over. The bi-polar, manic Acting behavior had better disappear or I will be assassinated by someone for sure.
0-60 = :D :0 :( :/ : hang in there! Tell everyone to put their seat belts on Hey look on the bright side, You might get only a mild case of the A$$ :) and you might need to have some of that in the real world. maybe the best parts of this as sometimes referred to Riba Rage or "split personality" phenomenon, will leave its best parts with you!
0-60 = :D :0 :( :/ : hang in there! Tell everyone to put their seat belts on Hey look on the bright side, You might get only a mild case of the A$$ :) and you might need to have some of that in the real world. maybe the best parts of this as sometimes referred to Riba Rage or "split personality" phenomenon, will leave its best parts with you!
Eureka,
Both you and Hector are amazing people, 139 weeks is an incredible amount of time and I know you are still going through it (doing the Waynes World not worthy bow). I will take your advice to heart and buy my guy and the kids the best head phones money can buy,ha...Now can you tell how to get my kids to keep their room clean!
Both you and Hector are amazing people, 139 weeks is an incredible amount of time and I know you are still going through it (doing the Waynes World not worthy bow). I will take your advice to heart and buy my guy and the kids the best head phones money can buy,ha...Now can you tell how to get my kids to keep their room clean!
I get mean as a snake :( but I have a great husband who reminds me I am being the B word and if that don't make me mad I am good lol. I try to keep it under control but I have always been an uptight kind of person, glad I am on ad's they do help, now if I could just stop the tears running down my face over nothing...
"even though i won't mean to be mean, it doesn't mean it will hurt the other person any less..."
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Happens to me all the time... but in my case, I can't blame treatment ;).
The fact that you're thinking about all this ahead of time will probably go a long way in helping you maintain self-control. Having been on the other end of the stick yourself, whatever tools worked for you may be worth passing on to the kids. Maybe you can sit them down and explain that you'll be experiencing the medical equivalent of "teenage hormones" in the coming year, and it's now time for them to cut you a little slack :).
As far as what worked for me as caregiver (my husband did 139 weeks), it was an ongoing challenge... when things got hairy, I reminded myself frequently that treatment was temporary... when my husband had those bad days, I did my best to react not as "wife" but as "friend" -- I found it helped to approach the caregiving role as impersonally as possible and to do my best to put aside any feelings and emotions, and take the perspective that his bad moods were outgrowths of the medicine cabinet :) rather than the relationship. Took a lot of long walks when necessary, and on bad weather days, I'd take "I'm unavailable" blocks of time with noise-cancelling headphones and lose myself in music. And of course, this forum was a heaven-sent lifeline when all else failed. Hope that helps, and best of luck! ~eureka
--------------
Happens to me all the time... but in my case, I can't blame treatment ;).
The fact that you're thinking about all this ahead of time will probably go a long way in helping you maintain self-control. Having been on the other end of the stick yourself, whatever tools worked for you may be worth passing on to the kids. Maybe you can sit them down and explain that you'll be experiencing the medical equivalent of "teenage hormones" in the coming year, and it's now time for them to cut you a little slack :).
As far as what worked for me as caregiver (my husband did 139 weeks), it was an ongoing challenge... when things got hairy, I reminded myself frequently that treatment was temporary... when my husband had those bad days, I did my best to react not as "wife" but as "friend" -- I found it helped to approach the caregiving role as impersonally as possible and to do my best to put aside any feelings and emotions, and take the perspective that his bad moods were outgrowths of the medicine cabinet :) rather than the relationship. Took a lot of long walks when necessary, and on bad weather days, I'd take "I'm unavailable" blocks of time with noise-cancelling headphones and lose myself in music. And of course, this forum was a heaven-sent lifeline when all else failed. Hope that helps, and best of luck! ~eureka
Hi 1oftheclub,
Consider talking to you caregiver about a key word or phrase or even just to say, hey your meds are kicking in. Hopefully if you have discussed it in advance it may click when it's needed and you can apologize quickly and explain you are having a reaction to some medicine that makes you overly emotional at times.
Catching it before it comes out of your mouth is a different challenge, I try to talk less when annoyed but every now and then a rant comes out before I can stop it.
Consider talking to you caregiver about a key word or phrase or even just to say, hey your meds are kicking in. Hopefully if you have discussed it in advance it may click when it's needed and you can apologize quickly and explain you are having a reaction to some medicine that makes you overly emotional at times.
Catching it before it comes out of your mouth is a different challenge, I try to talk less when annoyed but every now and then a rant comes out before I can stop it.
The following letter has been circulating among the websites and there are several with a similar tone and message. There was someone that had a journal post recently that had a small collection of these letter that might be good to read if you can find them.
An Open Letter To Those Without HCV - by Beth Oberin (from Nomads website)
Having Hepatitis C means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disease or the disability the treatment causes and their 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 HCV and its treatment doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school 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. I may be tired. I may be in pain. I may be sicker that ever. 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 five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.
Please understand that HCV and its treatment are 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 scold me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. HCV (and if on treatment) may cause a secondary/reactive depression but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it that, I would.
Please understand that if I say I have to leave/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 doing something else more exciting. HCV does not forgive their victims easily.
Please understand that I can't spend all of my energy trying to get well from my chronic illness. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness and its treatment.
If you want to suggest a cure to me, please 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 many people suggest one at one point or another. At first I tried to research or try them, but then I realized that I was using up so much energy looking for answers that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability 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 similar and different chronic illnesses and disabilities, and if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better might not happen at all. People with Chronic HCV have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens. But most importantly, I need you to understand me.
by Beth Oberin
An Open Letter To Those Without HCV - by Beth Oberin (from Nomads website)
Having Hepatitis C means that many things change. Just because you can't see the changes doesn't mean they aren't real.
Most people don't understand much about this disease or the disability the treatment causes and their 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 HCV and its treatment doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school 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. I may be tired. I may be in pain. I may be sicker that ever. 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 five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.
Please understand that HCV and its treatment are 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 scold me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. HCV (and if on treatment) may cause a secondary/reactive depression but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it that, I would.
Please understand that if I say I have to leave/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 doing something else more exciting. HCV does not forgive their victims easily.
Please understand that I can't spend all of my energy trying to get well from my chronic illness. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness and its treatment.
If you want to suggest a cure to me, please 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 many people suggest one at one point or another. At first I tried to research or try them, but then I realized that I was using up so much energy looking for answers that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability 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 similar and different chronic illnesses and disabilities, and if something worked we would know about it.
If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.
Please understand that getting better from an illness can be very slow. And getting better might not happen at all. People with Chronic HCV have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens. But most importantly, I need you to understand me.
by Beth Oberin
I am curious about this question as well, naive and starting tx soon too
Am worried as I have a tendency to go from zero to 100 quite quickly :-)
Am worried as I have a tendency to go from zero to 100 quite quickly :-)
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