How do you live with something like this? I hurt all the time. I can barely walk on some days. I can not go outside until sunset. How do you cope with all this?
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Dear Rose, it takes guts to learn to live with this. It’s not fun for anyone, and I am more surpised every day when I hear how many of us suffer with lupus. I started out on lots of anti inflammatory drugs and mild pain killers. I have a high tolerance to pain, thank God. I am always afraid that I will need more as time goes on, so I use it sparingly. I have found that with time, I can re direct my pain thought process by keeping busy doing something that I really enjoy, even if I can’t do it well anymore, and the pain lessens, or I can tolerate it more. I only take the pain meds now on occasion. I have found that exercise helps to release endorphins that lower my stress level, and ease the pain. It also keeps the mobility and function at a higher level. It’s all about fighting back. It’s very hard when you feel so badly, I understand. I just won’t let this ruin what’s left of my life. I have 5 grandchildren that I love dearly, and they expect Grammy to participate with them.So I do the best that I can, and it’s a good lesson for them to learn about limits. I am so sorry about your pain. Has your doc not been able to find something to ease it for you? It took a few tries for me to find something non addictive that worked to take the edge off without making me a zombie. I am not ready to be a zombie! Good luck, Rose, let others support you and know that you are not alone out there.
On the days that i hurt and can’t move that much, i try to sleep If i can.On my good days i try to pace myself which is hard without over doing it. It’s hard to make plans because you don’t know how you will feel . I just try to make through each day and try to enjoy my family.
Steven: Yes living with Lupus is very difficult. I am still working full time. But I am not sure how much longer I will be able to continue. I want to be able to work for three more years but I doubt that I will make it. I am in pain every day, some days are worst than others.
Your attitude is good, make the most of whatever each day gives you. Isn’t that kind of how we always lived anyway? We just have a stronger meaning for it with this newest challenge. The things we often took for granted, are now so very much more meaningful. We really do stop to smell the roses. Family and friends, a hummingbird in the garden, sunshine on the pond, all matter so much more. Keep doing what you are doing, and it will get better with time. I firmly believe that. My level of tolerance for the pain gets stronger. I find alternative ways of doing the things I have always done. In my case, my hands are most affected. I have tremendous swelling, and loss of most of my fine motor skills. The prednisone has packed on weight that makes my back ache, and I feel like such a blob. I am weaning off of it slowly, and am told that the weight will be more manageable when I am off it completely. Several of our life long friends have been afflicted lately with other more serious things, like cancer, so I thank God that this is all I have. As uncomfortable as it can be, it’s not cancer.