Welcome to the forum. It sounds like this is just the place you need to be. Oh can I relate to where you are and sympathize with how overwhelming this can all be.
I'd like to know more about you. If you're 33, then your child must be young. Do you work outside the home or at home? How long have you been sick? It's apparent that you don't have the support from your doctor that you need. I think you'll find all the moral support, answers, and friendships here that are missing in your life. We aren't doctors and we can't answer medical questions nor diagnose, but we can share our own experiences and offer our own suggestion as to how we cope and deal with these AI diseases.
We all deal with the need to rest and I know what you mean about paying the following day for doing too much today. If I have an important event that I especially want to take part in, I plan to spend the next day or two resting at home. Fortunately, although it has taken a while, my family understands and is supportive, and I hope yours is. Friends are a different matter. Most have trouble understanding and some fall by the wayside. With time I've learned to accept that. But it's tough. Acceptance has become my friend. As others have said here, naps are crutial to our well being. I hope you can fit them in as often as you want.
When I was in my first real bad flare, four years ago, I went into a pretty bad depression, probably because I was so overwhelmed, as you are. This forum became my lifeline because I could connect with people who understood what I was going through and I could talk freely about what I was going through. The people in my life didn't want to hear about it, nor did I want to be known only as a lupus patient. But here I could dwell on it, complain about it, whine, cry, ask questions, get support, and support others. Then I found myself offering support to others, and finally I began to pull myself together and learn better coping skills. I wonder how I could have done it myself.
So welcome, friend. You really have come to the right place. I look forward to getting to know you better.
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin