I find it hard to get ready for guests, do all that cooking, sightseeing and just never having down time. It is a relief when they are gone! Takes me days to get over the fatigue! I get where you are coming from! And I used to be the person with every one at my house, party, party, party!
Mary Ann

Me too! I can relate to every single word in your post. So much so that I can't even think of anything else to add!
Tricia

It's the same for me. I finally told members of my family that they couldn't stay here when they were in the area. It ruffled some feathers but I can't deal with the added stress anymore.

We are hoarders, so that solves that problem.

Actually, I miss having guests. A lot; I get pretty isolated, and I know my friends won't live forever and neither will I.

I think the ideal solution would be to just say, "Look, you're welcome to stay, I'd love to see you, but you have to fend for yourself, and I'm really not kidding about that. We'll hire a maid and make the beds before you come and cook some extra food, but that's absolutely it. I have a chronic illness, and we live in a dysfunctional culture where the simplest things are impossibly complicated. Here's our schedule, here's when you can borrow the car, here are the times I am available. That's all I can do."

I now handle it in the same manner as Catalyzt. My family were never really a problem, they are fantastic and very good to me, however, my friends were a different story. It became so bad that I isolated myself from everyone. It was peaceful and I was resting, but I was turning into a recluse. Me and two Yorkies....I was 42 turning 80. What I do now is tell them they are more than welcome, but they must help themselves. I don't clean up after them, make food, etc. and if I am tired and they are still chatting and visiting, I simply stand up and go to bed. My close friends are also single and they are most of the time welcome. If I am not great, then I give them 30min to chat and then I simply tell them enough and we watch a movie. It is imperative to be honest with the people you love and who share your life. It is difficult, but the ones that do not understand and respect your situation, are not worth calling friends.

I agree with you, it is very hard. It happened to me regularly all through my life, that on occassions, when I tried very hard to be at my very best to enjoy myself and have a good time, a flare-up not only made me look unwell, but also feel unwell.I have no idea why this disease goes lso unpredictable like that, but it makes me feel very insecure and unreliable sometimes...
I have the same problem with important appointments. I never know whether I am without any flare-up signs on the occassion and that makes me feel insecure, because, when I am in a flare-up I can't even concentrate and think as well as I should on the occassion...
The same goes with meeting friends and aquaintances... in the past I had to cancel meetings so often that it has been difficult to remain believable, because the next day after another cancellation I might feel much better and able to cope; this makes people, who may not know too much about me or my regular flare-ups of SLE/MCTD wonder and I don't really like to talk about "my" diseases too much and explain on each and every occassion my health details...all that combined has always been one of my biggest handicaps to get on in life and get going...
Do you have similar experiences and similar frustrations as well?
Best wishes from Kristina.

You all have no idea how comforting it is to read your replies. I sometimes wonder if "it's just me" despite my inner self knowing otherwise.
And Kristina....I relate to every word you wrote! Nothing can ever be predictable any more. And I too am tired of explaining my health. But canceling something, or missing out on my own appts or dates with friends...is somehow less stressful than anticipating guests, not knowing how I'll feel. The only thing I do know is that I never feel good afterwards! It's always just too much. Ugh.
But thanks everyone for your feedback....keep it comin!

Nancy