View Full Version : whats the best way

01-30-2007, 12:59 PM
Ok for the last few days I have been feeling really crapy. Yes I am taking all my meds. Thats what is making me frustrated. I guess I always seem to be frustrated. But, What I really want to know is what is really the best way to take care of ourselves. I think I am then I think its not good enough because I am still feeling blah. I AM SO TIRED OF BEING TIRED! We all deserve to feel good.
So what are ways of taking cre of yourself better? What is everyone doing to heal themselves? Lets exchange methods so we can help eachother better. Thank you everyone for all your help in support. I want to thank all of you who really care. :painting:

01-30-2007, 01:35 PM
Whe I feel really crappy, I put my headphones on and listen to my favorite music. I guess it's a kind of meditation of sorts.

01-30-2007, 03:21 PM
Adria, I'm just learning how to listen to my body (I haven't lived with this very long yet, so there is defintely a 'learning curve.') If I feel good, I pick one thing I really want to get done and I do that. If I have energy left, I try something else. But I don't push to exhaustion. I love to 'check a thing or two off my list' and I try to let that be enough. I don't do the marathon cleaning, cooking, shopping, etc. kinds of days anymore. The price is too high. If I feel lousy I do things that comfort me - I wear comfy clothes and stay warm, I read a good book, I drink a spicy tea, and I rest. Probably the most important thing I'm learning is to avoid stress - and if I can't avoid it, I try to find a way to minimize it's affect on me. Prayer, meditation, talking it over with someone (that can be someone on this forum!) are all ways to minimize the power of stress in my life. There is no magic answer for any of us. We're all different - there are as many different ways to have lupus as there are people on this board. And it's a journey. Just about the time I think I really 'get it' I realize I still have a lot to learn. Lupus is tricky that way, I guess. I hope you find your own 'comforts' and ways to care for yourself. DO DO DO read books, websites and come to this forum for info. But, it's most important to have a good doctor that you trust and listen to what they tell you. Lupus is for life - it's not going away. We'll always need to be vigilant about our own care, but at least we know we don't have to do it alone. I wish you the best!


01-30-2007, 03:39 PM
Adria, one of the hardest things to do is learning to set realistic expectations for yourself and your body. A lot of the medications, like Plaquenil, may take months to kick in before you feel better. It is really frustrating to take all those meds and feed like nothing is happening. But it's nothing you are doing wrong, it's just that the medications take time to work. In the meantime, eating a healthy diet, exercising when you can, things like yoga or tai chi or meditation to reduce stress - these are all things you can do for yourself. Unfortunately, lupus is a lifelong disease - there will be times when it really acts up, and times when you may feel almost normal. A lot of the learning curve Jody talks about is paying attention to your symptoms and noticing what things make you feel worse or better. Lupus is different for everyone - so you have to learn as much as you can about your particular disease. If you feel better at a particular time of day, try to arrange your schedule around it. If you get really tired in the afternoon, you may need to take a nap. Everyone's symptoms will be different, so don't be discouraged if a treatment or therapy doesn't work for you - the best treatment for lupus is the one that works for you. But sometimes it takes patience and a little trial-and-error to figure out what things help you most.