Aa
Feel so alone in this nightmare HELP
Hello all it's me Denise back again. last weds was shot 7. I am on AD effexor, was working until lately. My problem... I am so emotional and my family just doesn't get it. My husband is so nasty and critical of me. Can't come home from work without saying something to hurt me. My daughter (26) is here "helping" til end of month. She's been here for 2 mnths. She wakes up nasty to me. I disgust her. I'm a bad mother, etc... all the while I want to scream but I have to try to keep the peace because of my 6 yr old son. I have a very disfunctional family. I'm loosing it. Why can't my family just try to keep me calm and understand that my head is so messed up right now. If I ask for help with something it's like I'm asking for an arm or I am lazy/or exagerating. So much more to tell. I don't know where to turn. No one understands. I'm so tired, I can't sleep, MY family gets me so worked up I have shaking panic attacks. Doc also gave me klonopin for panic attacks. Not really helping. On top of it I'm going thru pre-mentalpause, ra factor over 500, lower back, hands & shoulder hurt and have limited mobility, have rumatolosist app tues. Also have neutropenia. potasium low. Red cells are still good though! Sorry for rambling. My parents are gone my family can't stand me. I want to do this for my son! Yes I know everyone goes thru crap during tx. But I have no one. :(
Junebug has a lot of excellent suggestions. You have to take a break and get away from all this negativity.
First, I would talk to your psychiatrist. To me it appears that you are depressed. The feeling of being overwhelmed. The effexor can be increased or another med may be needed.
Second, this one seems an easy call...Thank your daughter for her help, and tell her you no longer need her help. It appears she is doing more harm then good. Whatever bad blood is between you two, it needs to be resolved at another time. This is your time to cure yourself of the hep C virus. That is your priority along with taking care of your son. Your daughter and husband can take care of themselves. They are grown-ups now.
Third: Get outside of the home support.
Do you have a girlfriend to stay with? A neighbor?
You must find positive support. Whether it is a group or a therapist there are many options out there. They are free group meetings and low cost therapist. Find people who truly listen to you and that allow you to express yourself uncritically. You need to let your anxieties and fears out. Don't keep them inside they will only snowball into bigger issues. No one can do this alone. We are social creatures we need to interact in positives ways with others to feel good about ourselves.
"Why can't my family just try to keep me calm and understand that my head is so messed up right now."
It is sad that your husband and daughter "just don't get it" but not everyone has empathy and can put themselves in another persons shoes. That is their shortcoming not yours. It appears they have their own issues and you can't let them dump them on you as you are in a fragile state dealing with so much. Anyone dealing with what you are dealing with would feel the same way you do.
Do things you normally like to do. (If you can't find pleasure in them, that is a sure sign of depression). Go to the movies, find one of your friends to do thing with (it will ease your mind to be involved in something other then your illness), do something together with your son that you haven't done before.
Remember you can always get support here.
Good luck. Let us know how things develop.
Hector
First, I would talk to your psychiatrist. To me it appears that you are depressed. The feeling of being overwhelmed. The effexor can be increased or another med may be needed.
Second, this one seems an easy call...Thank your daughter for her help, and tell her you no longer need her help. It appears she is doing more harm then good. Whatever bad blood is between you two, it needs to be resolved at another time. This is your time to cure yourself of the hep C virus. That is your priority along with taking care of your son. Your daughter and husband can take care of themselves. They are grown-ups now.
Third: Get outside of the home support.
Do you have a girlfriend to stay with? A neighbor?
You must find positive support. Whether it is a group or a therapist there are many options out there. They are free group meetings and low cost therapist. Find people who truly listen to you and that allow you to express yourself uncritically. You need to let your anxieties and fears out. Don't keep them inside they will only snowball into bigger issues. No one can do this alone. We are social creatures we need to interact in positives ways with others to feel good about ourselves.
"Why can't my family just try to keep me calm and understand that my head is so messed up right now."
It is sad that your husband and daughter "just don't get it" but not everyone has empathy and can put themselves in another persons shoes. That is their shortcoming not yours. It appears they have their own issues and you can't let them dump them on you as you are in a fragile state dealing with so much. Anyone dealing with what you are dealing with would feel the same way you do.
Do things you normally like to do. (If you can't find pleasure in them, that is a sure sign of depression). Go to the movies, find one of your friends to do thing with (it will ease your mind to be involved in something other then your illness), do something together with your son that you haven't done before.
Remember you can always get support here.
Good luck. Let us know how things develop.
Hector
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 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 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.
.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.
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 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 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.
.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.
Dang that is crappy. Can't understand why your husband isn't cooler to you. If I was bald and not so good looking I'd kiss your butt, you're a pretty lady.
Have you tried other AD's maybe so drying else might work better. I used Zoloft worked real well. Trust me no one understands. My wife was nice and supportive but every once and a while she couldn't handle it. Complaining to me I didn't want to do stuff ect....ugh you feel so defenseless. I'd almost feel guilty...HA ! We've all been there, it isn't easy, mental sx were the hardest for me to deal with.
My heart goes out to you, hang in there !
Have you tried other AD's maybe so drying else might work better. I used Zoloft worked real well. Trust me no one understands. My wife was nice and supportive but every once and a while she couldn't handle it. Complaining to me I didn't want to do stuff ect....ugh you feel so defenseless. I'd almost feel guilty...HA ! We've all been there, it isn't easy, mental sx were the hardest for me to deal with.
My heart goes out to you, hang in there !
Plan 1: Pack an overnight bag. Go to a motel/hotel and don't tell anyone. Order movies, order room service. Go into the Jacuzzi, see if there's any outdoor festivals or concerts in the area. Do this for one week and they will miss you and see what fools they are doing without you. Remember you don't miss something until it's gone. I say go and stay for a week...
Plan 2: Go to Vegas for a week. Hotel rooms are very reasonable now and there's 24 hr. everything... Whatever you do, get away for a week. You will give yourself a mental enema and come back with new eyes on everything...
Magnum
Plan 2: Go to Vegas for a week. Hotel rooms are very reasonable now and there's 24 hr. everything... Whatever you do, get away for a week. You will give yourself a mental enema and come back with new eyes on everything...
Magnum
I'm sorry this is happening to you. I seem to recall that your husband was wiling to go to the psychiatrist appointments with you. Is he still willing to do that? Where does that stand? It sounds like he needs help with coping too and I'd suggest you make regular appointments for both of you throughout treatment.
Send the daughter home. Not much explanation is needed. Tell her that it's clear from the way she's treating you that this is too difficult for her and it's not helping you, thank her for coming and send her on home. Like Hector said, anything that needs to be sorted out between the two of you can wait til after treatment is over when you aren't being impacted by the drugs and when your energy doesn't need to be devoted to getting through treatment.
It's easy to say go away for a vacation but I wouldn't have been able to do that while on treatment. I had to keep working and there was no spare money in the budget for that. You perhaps need to start approaching treatment like you're a single person. Find a support group for Hep C in your area and go. Get yourself a regular counsellor that will be your support person. Hopefully your husband resolves his frustrations rather than taking them out on you. Address that directly with him if you can. And if not, then you'll have to realize that whether he's in the house or not, you need to get *yourself* through this. Some of us went through this as single people and you can do this. It's harder to go through it with an unsupportive partner in the house than it is as a single person but it's easier when you stop looking for help from people who constantly let you down.
Keep your eyes on the prize. Get through treatment. Good luck with this.
Trish
Send the daughter home. Not much explanation is needed. Tell her that it's clear from the way she's treating you that this is too difficult for her and it's not helping you, thank her for coming and send her on home. Like Hector said, anything that needs to be sorted out between the two of you can wait til after treatment is over when you aren't being impacted by the drugs and when your energy doesn't need to be devoted to getting through treatment.
It's easy to say go away for a vacation but I wouldn't have been able to do that while on treatment. I had to keep working and there was no spare money in the budget for that. You perhaps need to start approaching treatment like you're a single person. Find a support group for Hep C in your area and go. Get yourself a regular counsellor that will be your support person. Hopefully your husband resolves his frustrations rather than taking them out on you. Address that directly with him if you can. And if not, then you'll have to realize that whether he's in the house or not, you need to get *yourself* through this. Some of us went through this as single people and you can do this. It's harder to go through it with an unsupportive partner in the house than it is as a single person but it's easier when you stop looking for help from people who constantly let you down.
Keep your eyes on the prize. Get through treatment. Good luck with this.
Trish
Oh My! It just took me 10 minutes to read all these posts. I had to stop a few times to
cry, laugh, feel good inside (haven't felt that in weeks), smile, and cry some more. I Love
you all!!! Thank you, thank you. Here's a big kiss! :-0 I have to print this out so I can respond without rambling too much. And also for some inspiration. I'm off to the food store - haven't eaten right lately - no appetite :( I'll be back in a few hours and have to respond to all.
I couldn't even pick the best! Every response helped me today xoxo
p.s. I have drain fog too! Can't think straight ;p
cry, laugh, feel good inside (haven't felt that in weeks), smile, and cry some more. I Love
you all!!! Thank you, thank you. Here's a big kiss! :-0 I have to print this out so I can respond without rambling too much. And also for some inspiration. I'm off to the food store - haven't eaten right lately - no appetite :( I'll be back in a few hours and have to respond to all.
I couldn't even pick the best! Every response helped me today xoxo
p.s. I have drain fog too! Can't think straight ;p
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It's harder to be a caregiver than we realize. We are the ones with the shakes, the skin with ants crawling around on it, the ones who can't get enough air to walk to the mailbox...or stand up in the shower, and yet THEY are the ones angry and resentful???
well yes, but there are reasons. they love you, and they are going through the stages of grief. They don't want to lose you or see you sick, they are scared...for you and for themselves....they will have to process their anger, their bargaining with God, etc...and fnally get hopefully through grieving and come full circle...full circle is a return to love, to acceptance, to caring. If you look up the stages of grief, you will see how we process death and disease. Sometimes folks don't process, they get stuck in the forst stages and never make it past them...they need help.
we are expecting our families to be OK but not all folks can be on their own. Even ones with faith in God can get anxious for us. Have you thought of trying to get your hubby or daughter to see someone?? Be it a pastor or a psychologist I think it's worth a try.
the psychologist really helped my husband, and he was getting very ansy...there's just a lot of stress..on top of which I got so messed up I could stand up to even cook, much less shop. Very tired. For a lot of men, that is a real issue if they've never done it.
for your daughter it just sounds like she has her own life, and doesn't like having to be inserted into yours.I've seen more than one young woman melt down when expected to return the love that was freely given to them for years. If she can't handle it, let her go...the resentment isn't worth it.
If push comes to shove you can get help for what she does. And my six year old learned to cook his own oatmeal and a whole host of other things. They can be really grown up when the need arises.
It might help you to make sure and get on Epogen if your HB goes low...and it might help to show your husband a list of the common symptoms of treatment, and of oxygen deprivation. Perhaps he's be a little more understanding if he saw that list in print.
Anyway, keep your chin up, this too shall pass.