Hello everyone, I hope you all had a great Thanksgiving.I am pretty new to the forum, my husband has been on treatment for about 77 weeks now. He had a liver transplant March 2006. I was wondering how you are able to get up and go to work. My husband is up most of the night and sleeps alot during the day. He is on ad for depression and his on sleep meds but he only sleeps a couple of hours a night. He wants to g back but I don't know if he can.we will see his doctor dec. 10 so we'll know if he is going to stay on the treatment but I don't what else there is. Since he is transplant he can do any of studies they have. Well any input would be thankful. Ruth
I don't know - I think it's amazing that he had a TP --- and is on TX for so long -- is taking such heavy meds --- yet wants to go back to work.
My suggestion is to give him something to do --- within his capability... Something that can earn money --- because to me it sounds like he is bored --- and he needs to feel like he is accomplishing something -- but may not be able to do so --- which may lead to more depression.
Find him something --- whether it is a hobby --- or collection --- or something that he can do during the hours he is bored --- or during the time he cannot sleep....
And if it is something that can make some money - FABULOUS!
Maybe he could EBAY --- yanno? Have you ever tried that? A lot of home bound folks go to Garage sales -- and then go EBAY the items --- and they make good money at the very small part time work.
I dunno if it really works - but it would give him something to do --- and something to look forward to every day.
Much luck to you.
As far as energy --- some of us have it - some don't.... But 72 weeks is an amazing amount of time -- and 77???? Wow!
thanks for the ideas, he does some side work but only for family members and won't take money. But most times he doesn't want to get up. I try to get him to take walks but he doesn't want to do. The only thing he really wants to do is have sex. Right now that is the last thing on my mind. I get angry cause if he can do that he must be able to at least help around the house which he doesn't. Well thanks again for your input. Ruth
It's funny you mention that. That's about the only physical thing I am able to do during treatment and my hubby certainly doesn't mind that, on the contrary. I don't get out of bed much and get exhausted just taking my daily shower. So we are very happy that our sex life is not suffering from treatment. (now I understand what Meki has been talking about, dunno about the monkey part though :-)
And I must agree that standing up for 10 minutes to do the dishes, is much more exhausting than doing that. Vacuum cleaning is totally out of question. I can fold a little wash now and then. And I have only been treating for 15 weeks so far.
My hubby doesn't care that he also has to do most of the housework. He just does it, never one word of complaint. He is on tour a lot these days, so he doesn't even get to relax much, when he comes home. He comes home exhausted, often to my pile of dirty laundry and takes care of the whole lot. My son also helps of course, he takes care of me when my hubby is not there, the shopping and his own laundry etc. Sometimes he does ours too. This weekend I was so happy, because I was able to cook for my hubby for a change. I think I married and angel and I am forever grateful for the love and support I receive.
Some people can do all kinds of things like go to work etc on treatment, but there are also people like us, who are practically good for nothing, not even a daily walk.
I hope you and your husband will be able to find a good balance. I know it must be hard for you, as I have cared for my ill mother, who had leukemia. I also bathed her and fed her at times she was not able to do that.
But when one feels like this, one cannot force oneself to do something which is physically impossible. I'm just speaking from my own experience, but I find it almost impossible to do things which involve having to stand up for a while or sit up for longer periods of time. My body tells me when to stop, and I can feel that if I would push it a bit further, that I would collapse. It has happened several times, and it is a scary experience, when your legs just go. So one learns to read the signals, before it happens. I will either head straight to my bed, a couch, or sit or lie down on the floor, wherever I am. This is just a little description of my symptoms, maybe this is how your husband feels, too. Men are often not too good at communicating exactly how they feel. I have told my husband each and every feeling I have and how it feels in my body, the creepy crawly feeling of the meds all over the body even in the brain, feeling half dead half alive at times... The whole thing can be kind of creepy and gross and disgusting on top of this amazing weakness of the body. So even though my hubby cannot feel it, he can kind of imagine a whole lot of it. At times he was trying to get me to go for walks and realized afterward, that it had been a bad idea, unless I suggest myself to go out. Not worth the hours of exhaustion and pain afterward...
I hope this helped a little.
I wish you the strength to go through these difficult times. You might need to go and get a massage or spa treatment once in a while, because this is a very difficult time for you as well. Some relaxation and pampering usually helps to give new energy and make you feel better.
Thank you some much for your input. I was in an auto accident 20 years ago and have had chronic pain in my leg and back, I have a metal rod in my leg and hip. Sometimes I have trouble doing everything and I have never been an energetic person. I think the fact that he has a hair trigger temper and makes me feel bad alot is probably another reason our sex life isn't great. I want to be close but sometimes he is so hurtful..He also went to the doctor today and he has empysema and does not want to quit smoking. I have stayed out of work for the last 2 years since his liver transplant to take car of him but with finances and the rages I need to get some distance. I do love him we have been together for 32 years but this disease is tearing us apart. Well thanks for letting me vent I feel alittle better. I hope you will do well with your treatment it seems as though you have a loving husband, Thanks again, Ruth
I'm sorry to hear that you are ALSO having such a rough time physically on top of all the other things. I wasn't aware of all the circumstances and details of your situation. I am sorry if any of my comments offended you in any way. Under your circumstances I very well understand what is happening. Maybe you should try to get a way for a week or so to get a little air. It is very difficult being the care taker.
I remember when my mom was so ill and I was of course taking care of my 5 kids, being a single parent. After 1 1/2 years of this, there was a time where I knew that if I didn't get away, I would just collapse. So I talked to my mom's hepatologist and we decided to admit her into hospital until I would come back. I was able to recharge my batteries and go through the last few months, where I had to be the strongest. It is amazing how much strength I was able to gain during those 10 days.
Warm thoughts to you. You are truly blessed with patience and compassion, being such a loving wife!
You have not affended me at all . I appreciate your input as it makes me feel as though I am not alone. I tried to get my husband to join a group or this forum but he said he would feel worse. And when you talk to friends and even some family they don't know what you are going through so its hard to get honest feedback.
You have had your hands full in your life and I give you alot of credit. I hope God will Bless my husband and all who have this disease so we can all live life the way it was meant to be lived.
I also was wondering if you know what happened to Kristina? She always had an encouraging word to say.
Ruth, sorry hubby isn't cooperative and helping. It's rather confusing to me because sex requires an abundance of energy, well good sex anyway. I don't know how one could muster up enough energy for that and nothing else? Making a sandwich for yourself requires a lot less energy, picking up after yourself, or even personal hygiene. I guess it's a matter of what a person considers a priority but he really should think about you instead of himself all the time. To me it's selfish but I'm not married to you either. He is totally discounting your needs because your health is not good either. Perhaps if you weren't so accessible he wouldn't demand so much from you. You have needs to and sometimes when we are going through treatment it consumes us and we don't think about the other members of our family which can cause problems in the relationship. Hope it works out - but you are important too and never forget that.
"It's rather confusing to me because sex requires an abundance of energy, well good sex anyway"
LOL from what I can remember it is the most energy sapping, sleep inspiring, sweat inducing thing known to man if it's done correctly that is and sometimes..........you don't even have enough energy left to make your man that sandwich now do ya? ;) ;)
but then again maybe it's changed since my last experience, what would I know.
Kristina is around, I just messaged with her yesterday, I think. She just hasn't been posting much. But if you want to get in contact with her, just write her a note. I so agree with you, she is a wonderful woman!
Thank goodness I am not alone in this, I was starting to feel there was something wrong with me as sex is the last thing I feel I can do.
Not because I don't have the desire but I just don't have the energy and my naked skin is so sensitive I can't bear be touched and my mouth hurts so bad that kissing is not what it used to be! My poor hubby.
But I give him lots of full body hugs, tell him I love him heaps and look forward to the day when I'm off treatment and we can be like newly weds again!!
Nothing wrong with you at all. It is understandable that this would be a problem for someone in your situation. But nevertheless you make the most out of the intimacy as possible.
We all react different to tx.
I have no mouth sores or the like. My skin is also very sensitive to the touch, but in a very pleasant way. I will refrain from going into further details, but it is definitely good all the way. So obviously it is wonderful for us that we are able to share our love and intimacy and also have excellent sex. We definitely like to make it a priority, to use the little energy I have on something we can both enjoy together. We have been eternal honeymooners until now and we intend to keep it that way. The laundry can wait, the dishes can wait... they are not running anywhere anyway. Provided one's health and other circumstances allow it, I wonder who wouldn't rather make tender love to their spouse than doing chores.
I forget what week you are in, but I will say that while on triple therapy (weeks 1-12) that was the last thing on my mind as well. I don't know if it was the study meds or just the adjustment to the meds overall.
(and make your own dang sandwich, while you're at it, lol!!)
But....after week 12....everything is back to normal. Monkeys and all ; )
Thanks, Alittle humor is just what I needed. I guess I should be grateful that there is something he wants to do. Your right Marcia, I need to be worry less about
running the house and spend quality time with my husband.
And thank you Trinity, I thought I was being the selfish one since he is the sick one.
Isobella, what is with the monkeys? I have seen that in several posts but can't figure it out. I feel kinda dum.
Well its almost time for my husbands night time meds so I'll talk to you later.
To learn about monkeys, you gotta look up Meki and read some of her (hilarious) posts.....specifically the ones about the wild monkey sex on tx....haven't quite figured it out, but we each seem to have our own version.
Acutally read all her stuff.....lots of wisdom comes from Meki. At one point I had her quotes taped all over the bathroom.
There was a classic by her last year about a parody of us all sitting down for dinner complete with "pass the potatos" Priceless, lol!!
I would also like to say, belatedly...Welcome to the Forum!!!!
Your husband has been through alot, which means YOU are going through alot. This place is so helpful because we all "get" it.....whatever it may be at that particular moment. =)
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