I feel awful
I feel awful. It is Christmas and I am having a hard time getting out of bed. I wrapped all of the presents ,around 50 in total, but it took me 3 days. The pain has been excruciating. On a scale of 1-10 it has been 30 and I have a high pain tolerance. I am now having problems getting my breath and so I wake up at night feeling like there is a great weight on my chest. If I prop up then the breathing is somewhat better, however the pain in my back and hip is worse. My doctor has quadrupled the muscle relaxer, but I can't sleep anyway. I should be baking, but I have no energy and it is hard not feeling depressed. I have a friend who is upset because I might not be able to do a New Years Eve party. I just need to find enough energy to get through this...........sorry for the rant, but I just had to vent.
Thanks for "listening",
Maybe your friend can help you instead of being upset with you or anyone else, this is the season of giving :x-mas: Remember your limits and all you can is all you can do. Don't let the holiday season turn into more work and pain than joy.
I feel for you with your pain. I what I used to do compared to now is unbelievable. I wouldnt worry about your friend. Take care of you, do something nurturing for you on New Years eve YOUR WORTH IT! If you can afford it have the grocery store bakery bake your cookies for you. I know I like to bake and my kids are used to my cooking and baking, they really look forward to it. My christmas wish for you is that your pain level drops to normal and that rotten fatigue is completely gone. Merry Christmas! Ihope my prayer reaches your over christmas and throughout the year.
Karen, I'm sending you a all the cyber hugs I can today. I know how you are feeling - and it's so hard to face up to those limitations. Remember that family and friends (real friends, anyway) love you for who you are and not what you bake or buy, or whether you host a party. You have to be honest with yourself, and with others - this may not be the year you can be "supermom" (or "superSanta!") And the truth is, we shouldn't try to live up to those kind of expectations. Take care of yourself - a warm bath; a comfy pair of sweatpants; a hot drink. Whatever makes you feel better. Talk honestly with those you care about, and tell them how you're feeling. You might be surprised how understanding they'll be. I'm hoping you'll find some 'merry' in your Christmas, in spite of it all. Take care, Karen.
Thank you all for your replies. They came at just the right moment. Words can not express how grateful I am to have found some people who understand. Sometimes I feel like it is all in my head or something because these "normal" people who are around me still expect me to be the same as themselves and because I don't look sick all the time it may not seem real to them.
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.
Thanks, Brown eyed girl,
Nice to meet you and
My chest is much better.
I was very overwhelmed that day. this wall that I have hit is unyielding. I am hard pressed to find out just how I can go on and live like I am normal when my "self" will not allow me. A friend, (who has been living with lupus for 15 years) told me not to let lupus live my life for me, but to live it in spite of lupus. I am having a hard time finding out how.
I also have a feeling that my friends will be changing. At least I will be able to see who is a true friend and who can not be bothered.