Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 and Martha and y'all, I don't really have people to discuss this with either. My husband is supportive but not much in the emotional realm. He does not like to talk about it. He gets furious if I talk about dying. My children at home 13 and 17 aren't into learning about it. They don't like it that I can't do everything a mom should. My 22 year old daughter can't deal with it. My 20 year old daughter will talk with me and we are very close, but she works two jobs and then goes hunting and fishing with her hubby. She is about to start her very strenuous nursing program. She's a peach. My mom continually compares my illness to her growing older and all the aches and pains that go with that. I am not unsympathetic to my mother in the least. It's just that she didn't feel like this when she was 42. She doesn't seem to get it. But, then I understand, I'm not the only child of hers that is sick. My 45 year old sister is dying of cancer, my brother is diabetic, one sister has major anxiety problems, and then there's me. I think she somehow feels responsible. It's interesting how so many people just ignore my deteriorating health and never ask me how I am. Then there are those who are so kind. I wish I were a more thoughtful person. I just haven't got the energy to do anything more than I am. Cheryl 42, PSC, UC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Cheryl, We seem to have a lot in common besides PSC. My husband is also supportive when it comes to being helpful with the children and around the house, we both work and both do our share of the household chores. Besides getting up with the baby, he can sleep through anything. By the time I finally get him awake I might as well just have feed the baby myself. However my husband also gets furious when I even discuss the subject of dying, he just will not accept that it could be a possibility. We could always discuss all subjects openly, until this one, it is really hard not to be able to talk to your husband about your feelings. My oldest child is only 11 so even though he probably talks about the PSC more than anyone else in my family, I can only say so much to him, I do not want to worry him or make him upset, he is just to young. My twins are 8 and know about it, but just get upset when the subject is brought up, I am sure they are just afraid of losing there mother, which is very understandable. the other two are only 2 and 6 weeks so they have know nothing about it. My mother is the only one I can discuss it with and even she never brings it up, I have too and then I can tell she is uncomfortable with the subject. Well, I guess that is why we have this support group to be there for each other. Even though I am usually not to good at that, because I cannot seem to find much extra time in my day. However there are a lot of wonderful people in this group who are very supportive and helpful, I also wish I could be like that, maybe someday!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Cheryl, I can't imagine a spouse not wanting to know everything there is about the disease but I guess some just can't handle it. I'm sorry that you don't have family that can help you more. It must be so hard with kids at home (many teenagers don't have a thought process much beyond how things affect them). I as a spouse wanted to know everything and have an outlet of people who truly understand what its' like. This group is as supportive to the spouses as to the PSCers and remember the spouses need caring too, if not the physical problems PSC causes we are going through our own set problems this disease causes. We've also got spouses that seem to be suffering more from the PSC than their significant other, who may be in denial. I am so glad that Phil and I are able to discuss it pretty openly and how it affects both of us. Then there is this group that fills in the gaps. If you aren't getting the support you need from your family we hope to fill in your gaps. Thanks for mentioning the insensitivity of those of us that have a weight gain problem in joking about giving our weight to you who have the other extreme. I guess we are trying to make you laugh and I realize now it might be insensitive. Sorry. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Cheryl, I can't imagine a spouse not wanting to know everything there is about the disease but I guess some just can't handle it. I'm sorry that you don't have family that can help you more. It must be so hard with kids at home (many teenagers don't have a thought process much beyond how things affect them). I as a spouse wanted to know everything and have an outlet of people who truly understand what its' like. This group is as supportive to the spouses as to the PSCers and remember the spouses need caring too, if not the physical problems PSC causes we are going through our own set problems this disease causes. We've also got spouses that seem to be suffering more from the PSC than their significant other, who may be in denial. I am so glad that Phil and I are able to discuss it pretty openly and how it affects both of us. Then there is this group that fills in the gaps. If you aren't getting the support you need from your family we hope to fill in your gaps. Thanks for mentioning the insensitivity of those of us that have a weight gain problem in joking about giving our weight to you who have the other extreme. I guess we are trying to make you laugh and I realize now it might be insensitive. Sorry. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 I have also had this experience -- my husband absolutely will not discuss the fact that I may die. It may be that many man feel at a loss when they cannot control certain situations. I'm positive that Jim was in denial when I was very sick. You gotta love the optimism though........ Penny cathyre123@... wrote:. However my husband also gets furious when I even discuss the subject of dying, he just will not accept that it could be a possibility. We could always discuss all subjects openly, until this one, it is really hard not to be able to talk to your husband about your feelings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Hi Cheryl, I'm so sorry about your sister and the others in your family with health problems. It must be pretty hard on your mom, watching you all go through this. But Ed and I know what you mean about people. His favorite is when people tell him he looks good. I think most people are just very awkward around people with serious health problems. That's why Ed chose to keep it to himself as long as he could. Being out of work now makes it impossible now. Thanks for your kind words in your earlier post. Hang in there.... Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Cheryl wrote: > I am not offended by people saying they wish the could lose weight. It was > the implication that they envied my illness (because I lost so much weight) > without any acknowledgement of how sick I was. The comment I've been getting a lot when I tell people I need to gain weight is " I sure wish I had that problem! " I guess it really doesn't bother me, 'cause I know they're trying to be nice, but it does tell me that they really don't understand. I tell them to imagine that they're very hungry and there's a table in front of them with their favorite food, but once they take about two bites they start to feel sick. Then someone takes away all the food they like and brings our food they can't stand and tells them they have to eat *lots* of it! Not really a fun thing to have. They look at it from the perspective of " he can eat anything he wants " but the problem is that I don't feel like eating much of anything, but I have to anyway. Oh well! I guess it's true there are worse problems I could have, so I don't worry about it much! athan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 I'm positive > that Jim was in denial when I was very sick. You gotta love the > optimism though........ Well he at least thought enough to post to us and keep us informed and boy did we enjoy his posts. Both of you have such a great sense of humor and we need people like you. Peg Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.