Cirrhosis Support Group

I hate it when my husband who has COPD severe is MAD at me because I cannot go, or do what he wants, when he wants. I hate when my kids whom are all young adults (you would not know it) get MAD when I cannot do what they want me to do. WHAT AM I SUPPOSED TO DO! Talking to them does not help they do NOT want to hear it. They honestly think I am faking all this. My husband is just plain stupid the humidity here is like 100% and he is running around shopping in this heat how dumb is that? I have been jumping through hoops all day to do what others claim they don't know how or can't. I feel like crap, I am tired, in pain and don't want all this but today is the day they all want or need something.

I also got the your always sick routine! Well that just makes me feel so good and its not like other people are not sick what can I say I have no thoughts on this. Sorry need to vent big time I am sure some of you have gone through this or not. Idea's PLEASE!

Cheryl

Post edited by: abhome3, at: 12/04/2011 07:54 PM

Can you get him or the kids to go to the hep with you next visit? Talk to the nurse ahead of time, by phone, and let them know the problem. My docs have been my greatest advocates, laying it on the line with my husband, and the social worker with the entire family, explaining how I might feel ok some days but not worth a hoot on others, and what my limitations are whenever I do experience complications. Other than that, you can't be run over unless you allow it. It's hard to do, but learning to say "no" sometimes, must be lesson number one on your list. Put on the headphones and read a book in your room. I'm sorry that developing a thick skin is another of the many problems that you must deal with, but it's obvious that YOU are your best advocate. Please don't ever take any type of physical abuse, and try to avoid being around when the verbal attacks start. If you need help from an outside agency, then don't hesitate to contact somebody.

I'm so sorry, hope things get better. Bobbi

Cheryl,

I do understand where you are coming from. I really don't have a good answer for you But please vent all you wish. We do get it!

I know one night after feeling really bad , I stated "man I feel bad" the response was you always do. Arhhhhh! For the next week or two no matter how I felt when asked I said "I'm Fine" It worked for a while any way.

I also know that when I was sick in March and my son took me to the hospital He heard the Dr say "This is very serious But we'll treat it aggressively and try our best to help you"

The Dr also told him your Mom could die from this. that got his attention.

I have a great family But there are times when they just don't think. I also have to remind myself that I know they love me and that this is hard on them also. maybe to some degree they think if they ignore it it's not real.

In the mean time we're here for you.

Thanks everyone! I did the I'm fine routine till I'm ready to pass out and they can actually see it. My husband takes me to every single appointment I have he is actually present in the room when I am with the Doctors, he has asked them how long I have can you believe it, but hey curious minds want to know. When they told them this is not a disease you can predict and things could go south in a day or two a year or two or even 10 years one never knows he STILL DID NOT GET IT! We recently discussed our situation in regards too whose health will take a turn first and what will we do that was a discussion that was very hard for both of us. We could not find an answer

we do have a son who lives with us who does all the cleaning, yard work, and other things that need to be done. I thank God everyday for him, I have also explained to him and even read my book to him with explanations he does get it however he is working and

also is not home at times. My husband on the other hand I think suffers from Oxygen deprovation so things do not register as they should sometimes. I have taken that into account and yes we both see counselors and have even sat in on each other appointments to try to cope with things around here. I just feel I am so needed, I don't have the time to be sick and with each new symptom it just makes me feel very bad. No I do not let anyone abuse me, I just get angry because of the lack of feelings or regard they have because I look good so I must feel good too. I am forcing people to take responsibility for themselves and they don't like it, and this includes my husband. I do have to give him some credit though he does take me where I want to go, he also cooks and it is hard for him, I do help when I feel up to it and he shops boy does he shop I think he does it to get away as he is not good with things like this at all. He is even in denial of his own illness and its just plain out gonna kill him I think he has a death wish or something nothing I say does any good its like talking to a wall same with the kids, example my son came over the other day I was really out of it not feeling well at all he said common Mom you can do it, its not that bad I know you can do just make yourself feel better??? See that is only some of the comments I get or they just don't come over cause they cannot deal with it. I know this is all a part of life but it just stinks..... When I first found out about this I did go and make my OWN funeral arrangement because I knew it would be a mess! Its done right down to the last thing including the obit read. Sorry this is so long but I do my homework and also make sure things are done one way or the other just not feeling it so much anymore I don't do a lot of things I used to and noticed things changing. Being a caretaker and patient at the same time is very difficult one never knows..... thanks Cheryl

Cheryl you have to be thankful for what you have. You do have a husband and son that are helping you. Some of us, like me, have no one. It is hard to deal with this disease but it a positive attitude works miracles.

Cheryl,

I think it is great your family is so active and close! They don't want to see you sick is what it sounds like. You have to be your own advocate and learn your limits and the right to say NO and mean it! They will back off eventually. I hope you feel better. Your son is an angel! Like TzuWho stated, there are many people suffering alone. You are blessed with a big family. Feel better

Tzu I am very very thankful for what I have! I am sorry that you are alone! It's just the pressure that is put on me as a caretaker as well as a patient of not only this disease but other diseases that I have as well can be overwhelming sometimes especially when people think you should act and do as if there was not a thing wrong with you.

My husband blames me for his illness which he alone is responsible for, he also is angry because I am sick as well! It makes for a very hard road to travel. I posted because I wanted people who are in my situation (there are a few) especially with parents not so many with husbands to respond to see how they handle this.

From your recent posts it seems you are doing well and prayer and a positive attitude has done wonders for you and I am so happy for you!

There are not many positive things going on in my house so it is very hard to be that way just venting here. God Bless my friend Cheryl

Cheryl,

There is no easy way to handle the issues that you are dealing with. I think that most of us forget that everyone doesn't have the same support at home. I'm sure you are grateful for what you have even when it's not close to enough to what you need.

I know you love your family , Even if you don't like how they are acting. I doubt you will change your husband's attitude so the only thing you can do it the best you can for your self.

We are all guilty of thinking we can make things better with a smile and a hug But the truth is sometimes we need that hug with a good cry , Stomping of feet, or screaming instead.

Vent All you wish

One way to get most of the family to understand where Mark is... I always respond to their complaints of "Dad is always sick" as, "I do not know how he feels. I cannot feel what he feels SO if he says he is sick, we must believe him."

I have also used similar comments to THEM WHEN THEY ARE SICK. "Wow, you act like you feel bad. Since I do not know how bad you feel, I will believe whatever you say as to how you feel."

My son has never believed his dad feels as bad as he says. SO, I think it's part of who some of them are. They just figure if THEY THEMSELVES can work while sick... then everyone can.