We haven't had a chance to chat before, but I wanted to introduce myself to you....I'm Browneyedgirl and I know all too well how you have been feeling.
As someone who has a history of blood clots, I want to strongly encourage you to call your doctor when you have that "trouble breathing"....many people with lupus tend to have clotting problems with their blood. A blood clot can be fatal and is nothing to ignore, and if you don't know what to expect it can be very serious in just a matter of minutes. I don't want to scare you, it's just that I was having the same problems and I thought it was just acheness and heart burn. It turned out that I had several blood clots in my lungs and one very near my heart; so I was literally minutes away from death (as the doctor told me).
About your friend, there's a part of us that always wants not to disappoint our friends but when you're living with lupus, I guarantee you that disappointment accompanies any relationship you have. This is an unpredictable disease with flares that can pop up out of nowhere and remissions that seem to never last long enough. Many of our loved ones do not understand, nor should we expect them to....but we can expect compassion and perhaps you can invite your friend over for a cup o'tea and share your heart with her about what you're dealing with and that you are more frustrated than she is and that you need her to understand that this is a very unpredictable disease and it roars it's ugly head whenever IT wants to....not to our choosing (smile).
Above all else, I would want to say to you "be gentle on yourself, do what you can not what you think you should do" , my grandpa used to always say "thou shalt not should on thyself"....which used to make me laugh; but it is so true.
Some days, it's all we can do to get dressed, and have breakfast....and that's okay. Believe me, I was a woman who lived 19 hours a day on adrenaline for over 30 years and lupus has dictated a different schedule. I now understand that when your body hurts, it's telling you to slow down. When you feel like someone is sitting on your chest you should ALWAYS call a doctor, it could be a heart attack, blood clots, pericarditis, etc. Lupus likes to move in and dominate our bodies, but how we live with lupus is up to each one of us. It is hard, it is frustrating, it seems impossible some days....but ALWAYS remember, you have a world of friends here at WEHAVELUPUS to support and encourage you.
I hope you start feeling some relief soon.
"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly." - unknown