Good Morning Everyone,,,Understanding of TX

[Honey15637]

Good Morning All,,,,I pray today is a new day for everyone and we can start new.  Everyone has right to post here and if you feel unwelcome,,,,then you are allowing it. Only Cindy at Med Help can give us the boot!  If all will ignore what they are dying to respond to and get back to the hep c,,,then we can move on.

I have noticed lately being on tx,,,,that what started out in beginning with understanding from family and friends is now getting tiresome for them and they don't understand.  Are alot of you running across this and how do you handle it?  I know 6 months to a year can be a long time for people to be understanding but thats just the way it is for us if we are not up to par any given day of the week....

[mikesimon]

I was pretty sick one day and was sitting in my recliner watching stupid TV on a weekday afternoon. I'd been through transplantation and hadn't been feeling well for a long time - probably 8 months or so. A black preacher in a green Neru jacket was really getting into his sermon and I was fascinated with his firey brand of evangelism. He seemed to look right at me and the camera zoomed in on his face and he said "you can get sick but don't stay sick too long because people get tired of it. When you go into the hospital everyone is sending you flowers and cards and visiting you everyday but after about six months they're just sick and tired of you being sick and you find yourself pretty much alone with your sickness." That just struck me as I sat there on a sunny afternoon wrapped up in my blanket feeling just miserable. It is so true what he said. How do you get through it? Like everything else - one day at a time and one foot in front of the other. And the up side is you really learn who your friends are. Hang in there honey and you'll make it through just fine. Mike

[Sioux]

Hi, I am now 5 mo. post tx.
I think that it was hard for my family to deal with the fact that I was no longer able to do the things I used to. As for my hubby and son. They knew the struggles that I was going thru, although they didn't know how to help. (emotionally)They did help by doing chores etc. My mom would send over meals. Pops would give me extra hugs. I would get calls from my wonderful cousins (who live half way across the U.S. from me.
As for friends..... most of them faded into the sunset....
I have a few that still keep in touch.
I watched Dr. Phil alot. And learned that most of the time, you have to tell husbands what you need, as in Dr. Phil's words..
"they don't have a clue" And I have found that this helps alot...

Hang in there....
Many blessing to you.

[Sioux]

Oh, I hope I didn't offend any of you guys.... Sorry if I did.

Mike, That was a great post. A great way to look at things from the other side...

[PhilaGuy]

Sioux:  You are so right..I think that goes for everyone, really.  You have to tell people what you need, as awkward and unnatural as that may seem.  We're goimg through something they have no idea about, and it's unfair for us to expect them to have osmosis or to just KNOW somehow.  By all means, talk to your partners, let them know how you feel and how they can help - they really want to!

[sher_]

This is such a good topic for me to read. As most of you know my husband begins a trial this fall.He is an over achiever and has a very physical job. He pushes on no matter how much pain he is in. I worry he will push too hard on Tx. and what if anything I should say or help him with while on Tx. How do you give space Chev, but be there to make sure he doesn't over due or let him over due and realize it himself? I guess the closer this gets the less I know.

[Honey15637]

Wow,,,,Its so nice coming here as their is such a understanding!!  

Mike,,,Now if that isn't a powerful message,,I don't know what is LOL  Especially in the comforts of your own living room! Yes,,,but so true and forgot or hadnt even thought about it! Brings back a memory of a few years ago and my mom was so sick but noone knew what was wrong and nothing seemed to help. First few weeks,,I was over there doing laundry, cooking, running her errands etc and finally going into 2nd month,,,I was getting behind on my stuff and one day went over and she was laying down and I said "you know,,,if you get up and just bite the bullet, you probably would feel better"   She says to this day after finally getting past that,,,noone knows how sick she was...Ouch!
Maybe there is a reason,,,I'm now in these shoes! Thanks Mike! I hope you are slowly feeling better and coming out of the fog!!

Sioux,,,You are right,,,if I don't speak up and say what I need,,how can anyone know. haha Can hear Dr Phil saying "they just don't have a clue"  Thanks for the support Sioux,,,No offending at all from you!!  If anything you have always been so encouraging thanks!

Chev,,,As usual,,,you have some great advice and knowing since you have been on meds,,,,I just don't feel like talking like I use to and that is where people surrounding me think I'm being antisocial. Yes,,,I could handle if my family jot things down on paper and doing that within certain time limit but just lately not up to tackling all in one day like I use to do. And giving me space would be wonderful and not thinking that I don't want to be around them,,,,I just am not myself at all times! Mostly my girls are getting impatient! We usually like to chat for hours on phone and I for some reason now run from the phone!  So glad to hear you are slowly getting your life back and its so promising to all of us!!  

Sher,,,Your husband sounds like mine and if anything there is times mine gets mad and does even MORE because he says he is not going to let tx keep him from doing things he wants.  He learns though by paying for it next few days.  Just try to help when he asks and back off when he wants to be by himself and try to understand,,,its not you!  Its a long road for the spouse that is waiting around in background trying to be patient and doing this up to a year.  I think at times,,,the family has it harder then the ones actually going thru tx.  You will get through it as you see we all do,,,a little complaining here and there at medhelp will help you out!  Be Strong!

[Ella Mackenzie]

I have been on tx for 6 months and the people in my life have been very supportive. I have spent lots of time on the sofa watching old movies and I am sure everyone is sick of me being there but they love me and realize it is only temporary.

Lots of friends call all the time just to check in. Mostly I told them that I might not call back, that I just need the space until treatment is over. Most people understand. ONe friend brought food over every Sunday for a while but it took too much energy to entertain him for the hour or so that he visited so I had to tell him that I appreciated his help but didn't need it any more.
I usually would feel quite guilty, but I keep telling myself that during this time, it is most important for me to take care of me. I don't have to return calls and I get to eat all the chocolate I want.

[jonihs]

Way before I started tx., I had my hubby and family start coming to this forum. They saw what others were going through and were ready for the worst if it should happen. Not once did I, or do I now 3 mos. post tx., have to explain anything. That really, really helped me.   Love, Joni

[jonihs]

Also I wanted you to know that I did answer your Q under injection ?. Better late than never, I guess.

[Honey15637]

Ella,,,you do have a great support group! That is very fortunate for you and also,,,,maybe its me and I have pushed a few away too.  You said about the person delivering sunday meals which is soooo nice but being on this,,,I know what you mean about not wanting to feel you have to enertain maybe for an hour so its easier for us at times to tell people not to bother.  I guess if I was really bold,,,I could tell them to drop off dinner on front porch and ring bell and leave LOL  Isn't that awful that the meds can do that?  That is the part I hate as I usually love being around people.  I love the chocolate on the couch and you said "I don't have to go the phone"  Love it!!  Take care!

Joni,,,,Yes got your reply on shot and this week,,,I made sure about shot being at least 2 inches or more away!  Great Idea,,,about family reading in on support group  to get an idea I'm not the only fruitcake on tx!!  haha  Hope all is well with you!

[sher_]

This thread brought tears to my eyes and a new reality about all of you, that brought humility into my heart.

[Maybe someday]

I come here most days to read how you all are doing.  I do not have HCV, but the love of my life does.  He started tx last year...I have not seen him in almost 2 yrs and have not heard from him in almost a year.  I continue to email him, leave voicemail, and send cards...not often though...maybe every 4 weeks..don't want him to think that I am smothering him, but neither do I want him to think that I have forgotten.  My question is, when do I give up?  I don't know if maybe too much time has passed and perhaps I will never hear from him.  Please, communicate with your loved ones.  They will understand. Something is better than nothing.  Praying for him, as well as you all!  

[Ella Mackenzie]

I am laughing so hard! I would love to ask my friend to drop the food off on the porch.....I didn't even think of that. But I can't imagine how he would take it.  LOL

[DonL]

I am certainly tired of being a patient although most friends don't seem to mind as much. Probably because I have backed off from seeing most of them as frequently as I did so they don't hear it that often. We also don't have people for dinner, meet for dinner, etc. these days. I am tired of tx taking over my life and spending whatever time I am not at work thinking, talking, or writing about it.

My wife has been growing snippier with me. She is tired of my being tired and achy and not getting as much done around the house as I normally do. Also, she is not happy about my taking sleeping pills, which I really need to get more than 4 hours sleep. (She tried to wake me when the smoke alarm went off and couldn't. Fortunately, a false alarm.)

When I complained about her anger, she said, "Your treatment is hard on me, too, you know." She and I agreed to back off on getting annoyed with each other. I am at 42/48, last shot on Labor Day weekend, and due for vacation in the middle of August, so I think I can hold on, but barely.

[DH Bill]

I really relate to what you are saying. My wife was so sick and tired of me being home so much and being sickly all the time. It felt like to her that things were never gonna change.

6-weeks to go... I remember it well! Hang in there man!

I do qual test tomorrow last one was at 24 weeks. It has been 3-weeks since I stopped tx. Wish me luck that I'm still undetectable.

[DonL]

I do.

And thanks. I feel so stupid these days and work has heated up (a good thing) but I am not nearly where I should be. I will be glad for this thing to be over.

[Honey15637]

Maybe,,,You say when should I give up?  If you haven't had contact in 2 years and no replies to your calls emails etc...Then probably to me,,,that would be all you can do.  Usually on tx,,,you do pull away from people in general somewhat but I might have a day or two where I don't feel great and then I will catch up all my phone calls to visit etc...The time span you are talking about is a long time for no contact and there must be a reason other then the tx.  Just my thoughts...

Everyone,,,,Yes I totally agree that our families do go through very rough times and none of this is a smooth ride all the way around. I just pray that when this is all said and done,,,,That I will remember this year like it happned yesterday and be more patient of others etc...  The only thing that sometimes I get ahead of myself and this can be a negative thought,,,,But the relapse scares me,,,,I just don't know if I can keep coping with this disease year after year!

[Honey15637]

Hey,,,Great Idea and if we didn't use them,,,it wouldn't matter anyways because after tonite,,,Like you said,,,we are starting back over again.

[sher_]

BECAUSE WE ARE NOT AFFORDED THAT LUXRURY...GO TERESA

[Sam Hall]

Are we?
Sam Hall

[Honey15637]

We could have..lol

[layla]

Thanks for sharing that. That is the way it is for sure. I didn't tell many people to start with and if I had to make that decision again I would tell even less. LL

[rsterling]

Good Morning All!

I think my problem is that I look okay, so it's hard to grasp that I just don't feel okay.  

To all, when this forum is down, where do you all go to keep in touch?

Thank You,  Robin

[Sam Hall]

Trouble is right now everything i feel reminds me of pre or during tx. I wake with really stiff joints(that includes...during the  night) then i don't feel to bad  then 'round 10am i have to lay down and sometimes i sleep for a couple of hours then i'm fine. Cant really explain but i keep thinking of signs that it's still there.I have 6mnth PCR Sept so plenty of time to cook-up anxiety. But that's the name of most of this game.
Sam