Hi Hooversomom :lol:
Most of us here truly understands your fears and your frustration. I know how debilitating the fatigue can be and how you can feel as if you are letting everyone down because you can no longer do those things that you once were able to do.
You are not alone, we have all been where you are. One of the best things that you can do for yourself and your husband is to become knowledgeable about this disease, its symptoms, its medication and its treatments.
First, Lupus is a chronic and life-long disease. Your husband needs to understand this. The disease can get better and some people even achieve remission (those are times when the disease is not active). But Lupus NEVER goes away. You will have good days and bad days. No one can predict when the good days will happen and no one can predict when the bad days will happen. One of the most common (and frustrating) features of Lupus is the relapse/remission syndrome.
There is no cure for Lupus, but there are medications and life style changes that you can make that will help you to manage the disease so that you can live a relatively normal life style. Some of the lifestyle changes include taking recuperative rest periods so that you do not aggravate the fatigue. You will need to avoid the sun, eat healthy and try to get some form of daily exercise. Mostly, you will have to portion out your activities and plan them very wisely. Instead of doing several things in one day, you may find that you can only do several things in a week.
There is a lot of information on the web to help you understand Lupus, there are also many good books that you, your husband and even your children can read so that everyone has a good understanding of your Lupus and how and why you must make the lifestyle changes that you are going to make in order to be as healthy as you can.
You can also always come here where someone will always be willing to answer your questions, offer you support and comfort and let you know that you are not alone.
I wish you the best
Peace and Blessings