I was having the same problem with family AND friends. They'd say "you can't possibly be that tired, you haven't done anything." "Why do you always feel bad, don't you ever have a good day." And things like that and it would make me so mad. But honestly they really don't understand because they haven't been in our shoes and I told them that.

When I joined this website I took someones advice on here and sent my friends/family links to this website so they could read what it's like for people in my position, that it takes more time to heal then they realize.....it has helped a bit.

Yes I did the same thing there is a letter out there called to those that dont have lupus and it is pretty good. I am just so tired of being told "you dont look sick" Everyone acts like I love to not be able to do the things I use to. I was a dancer all through high school, cant do that anymore. I use to love going to the zoo with my nephew or to the movies and cant do that because I am so tired. Lupus is pretty bad and now getting the PE's it is worse.

I know exactly how you feel. For me I feel like telling friends and family "don't you think I'd be out there doing what I used to if I could." They just don't understand and probably never will so lately I've learned to not care what others think (which for me is very hard) and just push through each day whether with family and friends help or without.

Hugs

People suck sometimes. And sometimes it's wasted energy to keep trying to set them straight or convince them you're sick. I think it's best to stop trying and just live your life the way you need to right now, which is if you need to rest, rest. Their not believing you is not your issue but your friend's and family's issue.

And franky, people posting shit on Facebook about ANYTHING need to get a real life with real friends. I swear, Facebook is going to be the downfall of humanity, but that's a different topic entirely. Anyway, tell your sister not to post anything about you on Facebook. And that be the end of that discussion.

Cowgirl, amen. You gotta quit caring what people think and not get caught up in the drama. It's hard, because we want to be supported but sometimes, we need to find support in different ways.

I couldn't agree more about faceache!! Anywayyy family and friends.. I told my parents about this site and my dad decided every time I had pain that I had just read about it on here and convinced myself I had it too. This is the same man who was told I might not survive when I had my clot, he was so concerned but as soon as I was out he expected me to be back to normal.
Now I figure that only I know how I feel so stuff anyone who doesn't believe me!

Thank you all for your advise. It is just so depressing. I live by myself and if I dont have my friends or family to help me I dont know where to go. Ij just seem so lost some times. I am really looking for a good church that I can lean on but right now its just me and some times I just dont think I can handle it.

What do you need help with- Are you physically unable to do certain things right now or do you need emotional support? Is there a Lupus support group in your area that can help you? Have you ever considered therapy? I went after the PE, and it was very helpful to me. I didn't go forever. I just went like 6 times. It helped to just talk and vent and get out of my head a bit. I think sometimes, we just want to be heard. We want to say, this happened and I'm scared and pissed or whatever we feel and we don't want people to poopoo it or try to dismiss it. Therapy gives you that.

I know what you mean. My sister will say stuff to me sometimes that makes me upset. She told me tonight if it would have been her that it happened to she wouldn't have been sitting around. She would have been right up and doing things. I had major PEs in both lungs with DVTs going up my entire leg. Did I mention my foot is broken & torn tendon and I have been on crutches for 2 months with no weight baring on my foot at all. I can't drive because it is my right foot. Sometimes she seems to understand while other times she totally doesn't. My sister had a bad bladder infection recently and she sat around for two days. I think she thinks it shouldn't take longer than a week to get over all of this. She couldn't understand why I didn't go back to work a week after I got out of the hospital. I love my sister very much! I just wish she would understand what I am going through. She saved my life by getting me to the ER in time. I think it is hard for others to understand why you don't just bounce right back. This is the hardest thing. You have the mental stress of making sure you are listening to your body closer & that you just survived a major thing and then you have the physical stress. This site has been great. It helps me to know I am not alone or crazy for what I am feeling. Thanks for listening to me vent.

dmott, rmb has some great suggestions. You are going through a lot. My brother-in-law had Lupus. That is hard enough and makes you tired by itself let alone adding PEs and pneumonia to it. Your body has been through some major stuff! Your sister should try looking up some information on the web about your illness to see if she can find some ways to help instead of writing wrong things about you on facebook. By the way if they gave you pain killers, you probably needed some with all you have going on. Finding a good church that is supportive sounds like a great idea too. I will say a special prayer for you tonight.

I have an automimmune disease too (ulcerative colitis) so I get how that can affect you on, top of the clotting thing. Having a chronic illness, especially when it's not in remission, can wear you down to a nub, mentally, physically and emotionally. Support groups can be really helpful with getting you through that. You have to reach out though. I mean, no one is going to knock on your door and say, hi, I'm here to help. We don't get what we need unless we ask for it.

You are so strong to have survived this, so you can handle it. It may not feel like that, but you have to dig deep and remind yourself of that. Otherwise, what's the alternative? Take a day at a time, a minute at a time.

dmott,
I know how difficult it is not to have the support of your family. They honestly don't understand and I know you pray they never have to go through even a single day of what you go through. Just know you have people in this forum that are here to support you, we will listen and understand, offer advice and emotional support when we can. You need to concentrate on you! As RMB said if you feel you need to rest or even take a nap then do it. It's none of their business if you lay down or rest. If your tired then take care of your body, listen to your body and your inner self. You know yourself better than anyone else.
Stay well and follow doctors orders and know you always have a compassionate ear in here.
hugs
Ferr

I've told people that sometimes it would be easier to have a broken leg or a missing hand because then people could actually *see* what the problem is. With PEs, you usually look intact on the outside and people forget how much you are struggling on the inside.

I first read about the "Spoon Theory" on a blog by a girl with diabetes, but the original writer had lupus. Both of course, being long-term illnesses that don't necessarily visably affect the sufferer. The original writer was trying to explain to a friend what it was like to be sick and came up with the "Spoon Theory" as an explanation. It is too long to post here, but this is the link:

http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

I really enjoyed this perspective on being sick and maybe it will help you explain to your friends/family what you are going through.

Hang in there!

The "spoon theory" was awesome TossNTurn!
I hope you are feeling better soon dmott.

Yep! I really like it. Might be worth printing out a copy to have folks read when they are on your case about "looking normal."

I agree, no one ever knows how you feel and you "look fine". Right. My mother in law told me to just get over it and if I think about being past it I will feel better. That is true to an extent but anyone who has gone through what we have knows it's not only a physical struggle but emotional as well. (and she's on more meds than me so...) And just because the PEs may be gone doesn't mean we don't have bad days!