I feel like a big baby feeling sorry for myself. I need to vent I have know one to talk to. I just feel like know one understands. This is more or less directed at my sister I guess. She was dx'd with breast cancer about a year and half ago. She is doing great and looks great now. It was caught early but she's young 41 when it was caught. She elected for a mastectomy and chemo. It was very rough on her and her kids. She is a single mom to 3 teenagers. I never left her side. I was at every appt every chemo session I cleaned her house fed her kids took care of her emotionally and financially. And I would do it again.
I had a hysterectomy 4 weeks before she found out. Although I didn't get a visit from her during my recovery it kinda stung but I sluffed it off. It was an emotional time for me. I was 37 and although I knew the chances of having a baby was zero it was still hard to do. Her cancer took the baby blues away as her health was a priority to me.
It was shortly after her dx that I started having weird symptoms mostly the purple spots appearing on my right hip/back fatigue and pain. Because I was busy with her I didn't get it looked at for about a year. They would come and go. A host of other things as well. Now here we are and I have sle with nephritis. My kidney issues are not new but the dx of sle is new.
Now I know I'm not dying I don't have cancer but I don't feel good most days. It's one thing or another. You all get that. I hate the 6 pills a day I have to take probably going up to 9 here shortly. I hate the way they make me feel.
Last night she called and still most of the conversation was about her and her breast cancer. You see she works in a breast center so she is never away from breast cancer and its a part of her daily life and its important to her. I get that. It's important to me too. Anyway I can't totally relate but I can understand her fear about it returning. I want to be there for her and listen to her fears I love her she's my big sister and I need her. I don't mind listening I just wish I would get the same in return.
As we were talking the conversation turned to her medication causing weight loss and I mentioned to her I had lost a few pounds since starting cellcept. As I was talking she started talking over me and said she had to go she needed to call her son. My husband was staring at me and shook his head. I hung up and said what. He said how long are you going to keep taking it. Take what I said. He said her always cutting you off when the conversation turns to you. He said I know you need someone to talk to babe. I bust into tears. He's right.
He's gotten better. For years he said many times over its in your head your fine. He has come to several appts with me and now gets it. Well at least he says he does. I told him last night I didn't want to irritate him. He says you don't not anymore. I know as time goes on and with the right meds I will start feeling better and I know it takes time to get it right.
Constantly she is talking about what has been robbed from her because of cancer. Well lupus has robbed me of a child and took several from me. We have all been robbed of something in our life that's life. It's how we choose to deal with it. I am grateful, for what I do have as I said I am not dying. I am grateful for my life. I just wish on the days that it feels like to much I could get the same compassion from her as I give her.
Preach on girl! I was in tears for hours th other night dealing with this same thing (not a sister but the giving and giving when no one is there when I need them). I can give you all the same advice your husband has but I don't think that is really what you want. I think you want to hear that I understand and I really do.
It's ok to feel bad and you deserve people around that understand that. You also deserve to your spoons whenever you want. It is ok to say No
Vent on! We'll always be here for you! Anytime you need us, we are here. We've all felt at one time or another that we are screaming in a room full of people and no one hears us. But WE hear you.
Vent away! Some people just don't get it. To qoute Marlo Thomas, "My father said there were two kinds of people in the world: givers and takers. The takers may eat better, but the givers sleep better." Hope you at least know others of us have been there and understand the unexpected loneliness that comes when someone close to you does not take our disease, symptoms, or drug side-effects seriously. So sorry for your hurt.
You should tell her to count her blessings, and to be thankful each day that she is still alive.
Originally Posted by tomcatsgirl
Cancer could have robbed her of her life.
The irony is that many people who are diagnosed with various types of cancer in it's early stages can be declared cancer-free after the proper course of treatment.
But barring a cure, or a significant long term remission, people like you and I can never be declared Lupus-free.
Well, for what it's worth, I'm glad YOU're the one on THIS website - you seem to have an awful lot of compassion and patience. I am sorry that your sister doesn't share those gifts - even though sometimes they feel like burdens.
Come here anytime and complain - we hear ya!
I also sometimes wish family members or friends could be different than they are - I know better than to be that way, but sometimes it's just how I feel, dangit. It's nobody's fault.
But yeah - I agree with your husband - you DON'T have to "take it". Have you tried telling her how you feel? You really sound like you are pretty rational and balanced about things - it's not like you are denying the importance of what she has gone through and how it continues to impact her life...you are just asking that she give you a little listening-time and support. Of course, if she feels like she simply can't do that, she can say so...nothing you can do about that. But maybe at least give her the opportunity to hear you and (hopefully) rise to the occasion. It might even make her feel better - as you said, sometimes helping somebody else proves to be the best source of strength for us!
In any case - know that I'm sending hugs from Seattle...
Thank you all so very much for your kind words and I guess validating my emotions. I really try and not judge others for any reason as I have not walked there path. It wouldn't do any good to say anything to her really its just who she is and how she is. This isn't anything new it was just pointed out to me something I have thought but didn't think anybody noticed. I am a giver by nature and put others before me by nature it's who I am. Sometimes the nurturer needs to be nurtured.
I feel horrible for saying this but her breast cancer was not the worst thing in the world. She is cancer free although she won't say it but its gone. Lupus is not the worst thing in the world either. I guess that's my point she needs to find what good she does have vs what she doesn't. I have told her several times everybody has there dark days/months but those dark times are not what defines you it makes you who you are but does not define you.
We are very close and we talk almost everyday sometimes two or three times a day. She is very sensitive if i said something she would turn it on me. I did not call today. My feelings were hurt. I will be okay. Simply put I am the baby sister to an older brother and sister however most of the time I feel like I'm the oldest or their mother. We do need each other we're all we got our mom died when we were all young and my dad well that's another forum lol.
Again thanks so much for your kind words it does help. I hope to return the kindness to you all.
has she read the spoon theory
or the open letter
both of these have helped others explain to family members.
i understand your frustration...
my mother has had or knows all about every ailment, every operation, and every complaint known to mankind.
This is something I wrote for an Australian @Lupus group and how I cope with many friends and family do the same taking and never giving.
This is a comment I posted on Lupus Facebook and I think it refers to not only people with Lupus but anyone in a transition faze. I hope it helps others to come to terms with change in their life!
Desley Watson-Raston The hardest thing I have to cope with was admitting I had to meet my body's new needs. As i couldn't do the housework like I used too, I couldn't push myself in the heat, I couldn't be there for everyone else, I had to listen to my body. I had to learn to let go of my desire to have the home perfect and accept it as a real home with its faults and especially when I started getting cleaners as I used to struggle all week to get the house clean and feel exhausted and feel guilty because I didn't get it done in the two days instead now my whole week was full of guilt in looking at housework and trying to get it done and cope. Well I learnt to let go, I have cleaners and I accept that they are not perfect, I have learnt to use my energy to enjoy every day as much as I can and have so much fun, WITHOUT FEELING GUILTY at what I used to be able to do. Now that I have come to this happy place I really enjoy life. The house is clean, I have a wonderful husband, I paint watercolour, I play the flute, and clarinet or I am learning, I have great friends and have many laughs each day. Oh yeas and I don't regreat not working as a uni lecturer any more, it does take time to get to this place but it is a great journey getting here. There isn't any shame in using a walking stick, or parking in a disabled car spot, or being on the pension it is what you do,with your self each day. You either enjoy the day, worry about what you can't do, or refuse to accept the reality of what your capacity is now. When there is a balance in all of this then you can really enjoy each day.
Lupus is a hard disease mostly because it has such a bad reputation of being the hypochondriac disease. For the people who actually have lupus it it makes it so hard to deal with because people will never understand or sympathies a disease they can't see. My sister has never really understood how serious lupus is and constantly throws the fact that I can't work or go to school anymore in my face. It has gotten better now that we live apart but I never talk about my illness around her because she is like your sister and I just don't bother anymore. She used to get so mad at me when we would go somewhere and I park in the handicap spot, after 6 years she kind of likes my only nice perk of lupus. I am like you and have always been the strong one in my family, even though im the littlest and sickest it's just my nature. You get to a point when you mental health is more important than having to listen to your sister put you down, and it always makes me so sick when I fight with my sister, it's so stressful.
I am with you about cancer, it is bad and very serious but cancer has something dont have...hope. Thats a big thing, we don't get that feeling like we are going to beat this and this chemo will make me live. We don't get the luxury of that possibility of beating our disease and living a healthy normal life. We all live day by day thinking maybe tomorrow will be my good day, I hope that sharp pain isn't something serious, do I have my sunscreen on. We are constantly thinking about how many steps are in this building or do I feel well enough to go get groceries, or can I even get out of bed today. We all feel so guilty about not being able to do things even though mentally we know we can't. It's a very hard not to have hope, that hope that you will get better because it won't for us and we will always have lupus. Sorry if this is kind of depressing but this is how I think about the cancer versus lupus issue. I only ever talk about the bad stuff with you guys because I know you will understand when even the closets people in my life can't.