I’m exhausted most of the time. My sister who also has lupus says I should file for disability. Only problem with that is… Disability won’t pat for even half of my bills. Other than my mom working at a fast food restaurant, mainly to psy feo her online shopping. am the only income. I have 4 children all except 1 lives with me. The one that doesn’t has a toddler that I do take care of. My second daughter has a toddler and an infant. All of who live with me. She has a part-time job that helps with diapers and wipes. But not much as far as food and necessities. My son works for his spending money but does not contribute to the household. The father of my children has never been seen after my youngest daughter was born . Now 15. The father of my second daughter’s children is in Alaska. He pretty much took off. My husband is in between jobs and has been for a while. Not completely his fault but not helpful. And my mother-in-law has also moved in with us. Her last stop from the nursing home. I also have 5 stepchildren who come to visit. All this under my 4 bedroom home and only me to support it all. If I miss a day of work we end up either missing a meal or becoming past due on a bill. It takes everything I can to get out of bed in the mornings and go to work. There’s not much help as far as cleaning up and after a exhausting day at work is bad enough. Then I walk into to a tornado hit house and crying or complaining kids. When I finally break down and can’t take it any longer and start fussing I’m told to calm down. They don’t understand. And the way things are going I will be working up to the day I’m put in the grave. Check to check robbing Peter to pay paul. How do I make them understand what this is doing to me.
All I can say is my heart really goes out to you, I can't begin to imagine how frustrated you must be. No one with this disease should be its families only source of support, I hope you can find a way to get them to understand they have to start helping you, both with the chores and financially, if they're not willing to do that, maybe they should make other living arrangements, you need above everything and everyone else need to be taking care of yourself first. good luck
Time to set some firm limits- those that are able MUST work and contribute both financially and with household chores. PERIOD No exceptions no excuses. You need to lay down the law here- your health and well being needs to come first- if you go under you have done no one a favor by letting them off the hook now.
I wish I could help you. I know I can only say I know how you feel from similar lack of support, family support emotionally and physcally. Unfortunately people don't get it. They can't understand what they can't feel. Pray and meditate for your self. Be as loving towards yourself. What ever that may mean in your house hold. You have the weight of the world on your shoulders and are doing all that you can. I'm all alone, with no family close by. My Mom passed at the age of 86, she also had lupus. I miss my mom. My kids are doing great and don't live close enought to help. I have to build community for myself through people I know and meet in the town. I want to work, but not while I am grieving for my husband who passed last year after no real care for him through the VA, I don't want to sound like I am whining. I am trying not to be angry at everyone, because it makes me worse. I feel mad at myself. I guess because I feel ineffective. Not able to make my world work. I do not have the overwheming problems you are facing. I don't know, but love, love, love. Just feel as much as you can. I love you! I want for you to have solutions show up at your door for you. Yo deserve help and love. I will pray to all the angels of healing and gifts to hover around you. Goofy maybe? I love you. Look in your mirror, I love you. I love me. I love everyone with Lupus, everyone of us struggling. Send as much love to each other as we can. I love you!!!!!!! Linda Sue