Wanting the pain to go away is familiar to all of us. I know how hard it can be to have Lupus with two young children (one of which who has ADHD). You are probably feeling a bit overwhelmed and frustrated and that is quite understandable.
Here are some suggestions that I found to be very helpful:
Educate yourself and teach your children about your Lupus. Children must develop a basic understanding of Lupus to eliminate confusion, fear and misperceptions. Talk freely and openly about your illness and its symptoms and be open to your children's questions. Help them overcome their feelings of helplessness when mommy is sick. Try to pace yourself and conserve your energy for those things that are most important.
Don't neglect your own health. You must be considerate of your children's needs but not at the expense of your own needs. Don't try to be SuperMom and don't try to do everything for everyone.
Don't hesitate to askfor help when you need it, you'll be surprised by the willingness that you will find in your children and your family (you already have seen it in you husband and your family).
Because you need to care for yourself and pace yourself, try to keep your family activities simple but special. Be creative while looking for solutions and/or activities. Look for new and better ways of doing things together. Plan ahead and when possible, pre-arrange activities and outings. Remain flexible in your plans and make back-up plans in the event that you are unable to proceed with the first plan. If your disease dictates a change in plans, don't sweat it, you can make up for it another day or in another way.
Re-think your definition of a successful parent. Adapt and adjust your parenting plans and priorities to your new reality. Focus your efforts on what you can do, not what you can no longer do. Nurture yourself and your children, they will observe and learn from your words and actions.
Accentuate the positive. By example, your children will become more caring and compassionate towards you and others. Truly a gift from you to your children - the capacity to care.
Peace and Blessings