Dealing with fatigue and family

Hey there! I am so sorry you are not getting the much needed support! Have you read the spoon theory? it was written by a fellow lupie and it couldnt be written any better. It helps family and friends somewhat understand what you can be going through on a daily basis.

Have you looked into joining your local chapter for lupus? You can find it at the LFA's website. Support groups, in my opinion are the best thing for us lupies. They really understand what we go through and its just nice to meet men and women in your area that you can relate to!

I have a friend who was mildly complaining that her husband takes a nap in the living room recliner, then he wakes up and walks to the other end of the house to the den and takes another nap in that recliner in there and then he goes back to the other one.  I chuckled to myself and then explained that he isn't being lazy there are just simply days that that is all we feel like doing and that is all our body will allow.  He is 61 years old and has been dx for 3 years now.  He retired last year and has been sick ever since.  I can understand that she is afraid that he has given up and is sleeping because he doesn't have anything better to do but I also told her not to give him a hard time.  If there is something that she needs or if she is going somewhere that she thinks he would like to go also then wake him up and tell him about it otherwise leave him alone.  Last friday they found out that he has developed Sjogren's syndrome as well.  Now she is listening to me that he isn't just being lazy.  I pray that your wife realizes how life is with Lupus very soon.  I understand the guilt with all the naps, I feel that way sometimes, but I also know my limitations and if I don't go to my room and shut the world out once or twice a day for 30 to 60 minutes then I will over do myself and be worthless the next couple of days.  Lupus is a whole new way of life.  It sux but we and our families have to make the best of each day.  Good luck.