need some advice in family situation

Oh nona43,i feel so sorry you feel the way you do,you say you live with your daughter so i asume it's her home you live in rather than the other way around! Either way they dont sound very understanding of your illness...does your daughter think you swallow all those meds for the fun of it? Think you deserve a little understanding lupus is miserable enough to live with and it can be very depressing at times and i too cant get up some mornings because i'm in so much pain and this illness is very complex,fluctuating and difficult to control...i'm 47yrs old and my mother runs around after me sometimes because i feel so ill..fortunately i can still drive or i would feel so isolater too as you do and it can get you very down depending on others. when i've been in a bad flare though i cant drive sometimes for months but once i'm over the flare i'm fine but i never go more than about 15miles in case i'm ill and need to get home...i dont drive any distance coz i never put myself in a position where i could get too tired and feel ill and if i want to go out for a day somewhere i need someone to take me. my mother is 74yrs and fitter than me and i'm very lucky to have her..I live alone so i just shut the world out and ignore the phone if i dont feel well enough to have a conversation coz when i'm bad i cant even cope with that! You have a lot more than me on your plat since my lupus is mild...I think your daughter needs to be a little less selfish and read a book on your illness then maybe she'll be a little more sympathetic..we dont choose this miserable existance but we try to make the most of it with a little help +understanding!

Hi! Nona and everyone,

Before I give you my "free" advice I want to let you know that what you are feeling is ok and justified, and I can relate to much of it. My youngest daughter is often hypercritical and unkind, my oldest got wiser with her age. They often said, 'but you don't look sick, if you'd get off the couch and get some exercise you'd feel better, or that I couldn't possibly be as sick as you are acting...." but I am. I read everybook on Lupus I could find, and asked both my daughters to read "The Lupus Book" and "The Spoon Theory" for me. I am considering disability soon, and am blessed that my husband is so supportive. You aren't going to get a "magic" cure, family is what family is. What you are entitiled to is a bit more understanding and tolerance, more BALANCE from your family. Is there someone, an impartial observer, you could talk to? A minister, or check with your dr, a family counselor you could just sit down with to help give you some distance from your hurt feelings, and the mutual feelings of resentment and disparity, and stress, that only make your illness worse. I started a journal, and for  years that kept my sanity. I would write whenever I got angry or upset, or even had an unusual good day. And often, when I wrote I "talked" to my daughter, and ranted and raved. I would be careful to start a new page each time, because several times I ripped out pages and flushed them down the toilet... but that too, was helpful. It helped me see what I really needed to talk to her about. And then I wrote a list of 10 things I wanted different. In priority order, and a why. Then I selected 3 things that I felt were most important. And I worked to fix those top few issues. How would you eat an elephant??? One bite at a time,

hugs, keep us posted, share(not vent or whine) with us when you need to.

suetoo

Hey Nona, sending you huge hugs and prayers. I'm sorry you are going through all of this. Sadly many people are in your possition. I have been staying with my bro and sil for about a year and ahalf. I'm moving into my own place next week that goes by income. I can't wait! I just spent 2 weeks into hospital and my dr. wants me to get a motorized wheel chair because my lungs can't support my heart when i get sick. My 50 year old SIL just pops up with "I don't want you to get a wheel chair then you won't do anything. So I figure it's ok if my heart blows up as long as I'm not in a wheel chair. Frankly she said it so fast the only thing I can get from it is She thinks it will be a hassle in her life some how. At least in your situation your kids are still at a basically selfish age. Well at least my 29 year old son is. I think some of us are blessed with care givers and some of us are not. Are you in a position to get your own place. I know you are the bread winner there but hey they are grown up and if they think that you are being worthless then let them have to take care of their own stufff. You know what? This is all crap. We got a bunch of minipulating little buggers that need to grow up. You are sick disabled and you don't need their crap. You certainly don't have to pay for their love. But if they can convince you of that they got it made. You are sick you're disabled they are going to put you in an early grave. Stand up to them. Tell them if they don't get it together you are gone. They need you much more then you need them.

you come here and rant any time you want to. We have all been there. I think I have about 30 trophy's so far. But it was a long summer.

hugs

carol

Nona, sending you a big gentle hug. You are in no position to be a babysitter or cleaning
lady. You are important and the emphasis should be on you, your health and well being.

Hoping that some positve changes happen in your home soon and you will be appreciated
for the wonderful caring woman you are. We Care!

Hugs

Robin

Nona--
Sorry your family and friends don't "get it". I had finally gotten through to my family and started going through this again because I went to church and some people there don't understand because I basically look okay. People are afraid sometimes, other times they are just selfish. They say misery loves company so maybe they want to get you back to work because they view their jobs as miserable. Who knows. But I seldom find its out of compassion. Sometimes you just have to kind of tell your older kids to just "get a life" and focus on their own problems. Living with your kids can be a blessing and a real problem. The only thing I can suggest to you is to tell them you just cannot do it, when you can't, and to have them read the spoon theory. Remember, no one has the right to "prescribe" a lifestyle to you, especially when they don't understand what you are going through physically. Like so many other replies say, I'd pull rank as Mom and explain how hurtful the comments are to you and how insensitive they are being to your illness. Basically, it sounds like mykids that can take advantage of my brain damage to order me around and then all the sudden I have to stand up and yell "Back Off!" Bottom line, she's being rude. As her mother and an elder she should respect your ability to know what is best for you. If she doesn't like the extra burden of a little extra cleaning at times, maybe you can split paying a housekeeper. I was doing dishes every night by age 5 so it doesn't hurt a child to learn to do these things, along with vaccuuming and cleaning the bathroom and I got money for it. Kids have to learn sometime and I thought it was fun. So maybe the grand kids can help some. And your babysitting and teaching services are worth alot. A whole house cleaning once a week is much cheaper than a week of child care with expert mothering. Just don't let her take advantage. And as for loneliness, I got back with church and go to the library when I can and communicate alot through the web. I know its hard, but I have learned that the void of loneliness can be filled by a small dog or cat, spirituality, hobbies, many things. And once you are not so lonely when you are alone, then people have a way of finding you, but you may not want them by then! You are not alone, we are here!

Nona,
I hope you have read the spoons theory. I forgot who mentioned it to you earlier. Your daughter needs to read it and hopefully it will help her understand what you are dealing with. Maybe take her to the doctor on your next appt. and let him/her explain how sick you are.

I went through the Cytoxan infusions about 4 years ago. So I can relate to the after effects. Bless your heart. You don't need that kind of treatment from you family and friends.

You will be in my thoughts and prayers. Rest and let someone else wait on you. You may have to put your foot down. Keep us updated. Hope you feel better soon.

Babs