You found a good way to describe how we feel. Love it. Usually I have told people that "It's not a good day for me," but I might try your "unplugged." Great descriptive!

Just diagnosed a few days ago with Lupus.....in a flare now and it's a freaking doozy. I know exactly what you mean when you explain "unplugged" couldn't have described it any better. I am going to take your idea and put into play in my own life....my son more than my fiance need to know when I am caput.

I think you pretty much hit the nail on the head so to speak. My family is wonderfully supportive and have learned over the years that I can be full of energy one day and go go go like I did pre SLE, etc and when I'm like that I need to be able to do just that and not be told "you're over doing it, don't do too much because it'll put you down for days if you do." Because the simple fact is with lupus just getting up doing normal housework, nothing out of the norm and then waking up the next day can put me out of commission for a day, a week, or longer, I just never know. I have to be able to live life as it comes and that means taking the good and the bad. Over the 20 years of my diagnosis my family and I worked hard to understand and cope with this mystery of an illness.
The biggest problem I face is that people outside my immediate family, husband and kids do not understand the madness of lupus and question my lifestyle. Question my illness still to this day. I have lost many friends, family members have really distanced themselves which is hurtful. I ask you all is it because we don't have cancer or a disease of such and die off in a timely fashion that makes it so hard for individuals to understand or is it that we seem fine one day and not the next that just makes us seem crazy or like we want to be sick on purpose? I've always tried to blow others opinions off, but lately I'm really struggling with this.

@Mel1967
I think it's because we "don't look sick." People don't understand what's going on inside, because the outside looks normal. They often think we're exaggerating our symptoms.

#keepsmilin37
I love your avatar. Is that a papillon?

@nanny1611, thank you for your kindness. You are exactly right, it is because we quote look healthy, that's what is so frustrating I guess I'm just tired after such a long battle and going through yet more issues right now and my body and mind are not healthy.

I do try to keep smiling through it, just have hiccups every now and then.

Not sure who to give credit for the avatar, came across it on Pinterest, don't believe there was a credit given but I loved it.

Have a great day.

I feel ya.

I had someone hurl an insult in my general direction about how "healthy people should work" because they cannot see my pain. I was having a really bad day pain wise and flipped out on the guy. The rant was scathing. Not usually like me.

I'm so tired of being judged by what I look like on the outside on a certain day by people who've never held my hand while I was in pain, my hair while I puked, or my empty pocketbook when the bills came. And, I'm not gonna take it anymore!!!!!

I shouldn't have to explain to ANYONE but my family and my doctors how I'm feeling, and then to only those who've held my hand, my hair, or my empty pocketbook.

You did hit the nail on the head. I've gotten that alot over the yrs & at first I had no idea how to explain but somewhere along the line I connected with saying "well, it's like there are world war three battles that go on inside you."

i think it would be great if the powers to be, could put more information out there regarding lupus, maybe a public awareness drive like they do with other disorders. I was at a hospital er with my daughter yesterday for 10 hrs, (shes fine), i was outside getting some fresh air and trying desperately to avoid all the sick people, when a woman approached me and sparked a conversation, she has COPD and fibromyalgia, we got on the subject of autoimmune and i told her i have lupus so i could relate to her issues, she told me people tell her all the time, "you dont look sick": i was so mad, i get this all the time. What does sick look like???Its a sad fact that there is not enough info out there on lupus as well as many other auto-immunes. Ive also noticed over the years that many Dr's dont like to talk about lupus, i think its because they are not educated enough about it, and for them its not worth there time to try and educate.. Sad, but this is how i feel sometimes..Anyway, thanks everyone for your posts, love and peace

Yeah. I got tired of reading articles put out by "Lupus Organizations" because most of it was some famous person - or just a person who was talking about how GREAT they feel!

I'm like, "What the heck am I doing wrong!?" I felt like a failure. But,the people who aren't doing so hot get little attention in the media. I found a few...but not many:

http://news.health.com/2015/10/09/lupus-real-people-stories/

http://narrative.ly/living-with-lupus/

I "get" that the medical community and the media doesn't want to harp on how bad Lupus is to scare newly diagnosed patients, but dam* it, we're HERE. They don't publish magazines about how great cancer patients have it, do they? If so...they should stop that right now.