What I wish people would understand

When I was diagnosed with Lupus about a year ago, I had no idea what path I was going to go down or how I would feel from day to day. I felt like I had a death sentence handed to me and I was not going to be able to watch my kids grow up. I know now that there are things that I can do to help myself and my disease. Also I know that the chance of me dying from Lupus is slim. The one thing that I wish people would understand is the symptoms that come with it. Looking back, I cant blame people because before I was diagnosed I was blind to what people are going through too. I always thought that it could not be that bad. I had a boss that had fibromyalgia and would have extreme fatigue to the point that she had to quit her job as a successful veterinarian to stay home and even then her husband had to do all of the domestic chores and feed the kids when he got home from a 12 hr day of work. I admit, I never understood and I guess until you live it, you can't. I just thought she was lazy and using it as an excuse. Boy am I so sorry. Along with Lupus comes chronic fatigue.....no one, not even my husband understands the way that I feel. Because of this I get pissed and defensive when someone complains that my house isn't clean, or I didn't get to something I said I would, or I wont go to the gym. It hurts. You think that I like feeling like this. Like I am inadequate, a horrible wife and mother and all while trying to fake it on the outside so no one will notice what it is really like for me. More days then not, I fight to stay awake while I am driving because I get so tired. I pray to god that me and my kids will get home safe. I pass up playing with my kids to lay on my bed and then am full of guilt for everything that I have missed and how they are missing out on their mom. There is no true way to explain what it is like being this tired unless you have lived it. I guess you could maybe say it is the kind of tired when you have a newborn, only it goes on forever and you never get caught up. I still don't think that quite is enough though. I would love to get help at home, like an organizer or cleaning person or something, but that costs money that we cant afford so I look around at all that has to be done and get even more overwhelmed. I am not writing this for pity, I am just writing this so that maybe when someone is cranky or rude or grumpy, maybe they are having a bad day or living with a condition that no one but them knows about. Now don't get me wrong, I have good days too...but I just wish people would understand how most days are.....