your opinion?

[LisaMarie]

I get just as fustrated...my feeling if you don t want the answer don't ask....since we don t always look as sick as we feel ...I think it is hard for people to believe we are as sick as we are ....sometimes I just want to ly in bed and bawl and wail due to the pain and the pure exhaustion from the fatigue...but God made me a stubborn strong person who will probably die working at my desk then laying around somewhere.....I think somepeople do not understand this disease kinda determines our daily life so it is always a thorn in our side

[Sangye]

I remember early on having major problems with all this. One day my therapist asked me to describe what I'd like others to say and how I'd like them to treat me. You know what? I couldn't even answer it! I was so unclear in my own mind that that was what came back to me from "out there."

The other piece was that I couldn't feel compassion for myself so I didn't even recognize it when others directed it at me. I labeled it all as "pity" and resented them for it.

I still have these habits and have to stay on top of them. They crop up everywhere-- in relationships with friends, doctors, receptionists, you name it. Sneaky devils!

[alexciasmom]

So it'snot just me. lol I gess i need to find my sense of humor agin Thanks for the input.

[Hammy8241]

I agree. no one really wants to listen to the answer. We look OK, so we are OK.

Still, in my normal manner, I'd like to help. So after great thought, i found this mood chart which you can show to people. It will save them asking and you having to answer - great!

[BrianR]

Love the mood chart Hammy. And...great name for your pooch! No one who lives in our town of Jasper can really name their dog as such so nice to see it crop up on such a handsome canine as yours! I trust he is making his mark throughout your house as all good pups will do!

[Hammy8241]

Thanks Brian.

Not picked Jasper up yet so the house is still smelling sweet. Collect week Saturday. We go and visit him each week. Been collecting newspapers.

Good of you to name your town after my dog, he'll be proud.

[NicShaf]

Has anyone else found that family and friends after so long when they ask how u are doing and you start to tell them and its as if they really don’t want to know. And most of them act like that just because your on what hopefully will be your last treatment that it’s a cure. And you should now be all the way back to normal doing what you did before you got sick. Or is this just me?

I find that it's a 50/50 mix. I think those who have gone through something difficult or had a loved one fight a tough battle against some sort of disease are usually genuinely concerned in what I say and how I feel. I find that most "healthy" people, especially people my age, don't really want to hear how I'm doing...nor do they understand what I'm going through. I have learned to read my audience a little more, and I tailor my answer from there.
I talked about Wegs and what I'm going through to a friend’s wife...I especially confided in her about how we may not be able to have kids because of everything I'm going through. She still insists on rudely asking us in front of people "when are you guys going to start having kids", even though she knows it's a sore subject. And she acts like, "oh, is that still going on". Grrr, just had to vent about that one

[ScreaminMeanie]

Oh boy, Nicole, that's a tough one. I'd be pretty upset if a friend did that to me......

Sangye, I think I'm a lot like you described, too.

I think a lot of my unwillingness to talk about it is that (some) people subconsciously (or even consciously) blame anyone who is sick for their own condition. I fear that anyone I tell might do that, since it has happened with so many other people. It may not be overt, and they may not realize they are doing it, but trust me, they are doing it. I have friends who ask me why I don't go out dancing anymore. They know how much I love to dance, and they just can't understand - didn't I have some treatment? Aren't I doing better now?

Another part of it, I think, is that people we are really close to (spouses, parents,close friends, etc.) don't want us to be sick, so they might be in a form of denial about it, and it can come across as lack of understanding or lack of caring.

Like others have said, I think all we can do is have a sense of humor about it.

[alexciasmom]

Oo he's so sweet.... LOVE HIM... good luck with the puppy stage lol

[alexciasmom]

o hey any one else having trubble sleeping? And what have you found out that helps? (Plese eexcuse the spelling between the drugs messing with me and numb fingers its some times a pain to type.