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I have been "living with lupus" for over three decades and I am constantly struggling to deal with the symptoms of a patient aging with an autoimmune condition. Do you have any ideas or suggestions?
I am going to be 68, this August. Like you, I've been living with this illness for many, many long years, (now it is believed since high school, but they didn't know about it then). The only thing I do, is to try to remain positive, live each day as fully as possible, try to eat right, exercise when it is possible and listen to my body, when it is complaining and rest, (which is something I don't often do and should, always pushing myself. This is not always wise). I look for the positive, in life, focus on the beauty and try to be stress free, (if possible). I wish you all the very best... Always!
I’m 57 and was diagnosed after my son was born. He is now 30. I got really sick after I had him,but it took years for a diagnosis to come, and after I found my specialist we worked backwards and figured I had been sick since I was about 14. Anyway, getting older has not been easy for me. I have been on Disability for over 20 years and not working has not been fun. At least when my son was younger, I was able to stay active and feel like I had a life outside of my house, but now I really don’t have that. I was very sick for the past 6 years in and out of the hospital and rehabs,so I think the friends I had thought I died. I find it so hard because I am not always well enough to get out on my own (driving) and I live in an area where we don’t have mass transit. So.....there are periods that I go months without getting out except to go to the Doctor with my husband. I know this isn’t very positive, but all I can say is when I feel good I do my best to look up a friend and spend time with them away from ,y house even if we just have lunch or something or do a lot and I pay for it the next day...it doesn’t matter...make the best of those days...because you never know when the next good day will happen! 💜
I have been "living with lupus" for over three decades and I am constantly struggling to deal with the symptoms of a patient aging with an autoimmune condition. Do you have any ideas or suggestions?
I've been wondering about this too...because I've been sick for so many years and haven't known what it was but now to put a name to it, it makes me wonder even more.
I am “stuck” in too. Not working and feeling like I have no purpose anymore at 51 is hard. Some days are bettering than others. On those days I do stuff I want to do. I can’t do a lot but I won’t let my planning stop. There’s so much i feel like I want to do.
The best advice? Do what you can, as you can. Find something you like to do (that's nearly always possible) and make time to do it. I love to sew, and even when I can't really get out of bed, I can do some hand-sewing, so I make little things and turn them into quilts or table-runners, etc. I think it's important to have something else to focus on, besides this disease. Friends are important, too, but they often get tired of our need to cancel. Don't be too hard on yourself (or on your friends), and take care of yourself--mentally as well as physically.
I also have had it over 30 years. My 1st rheumatologist was wonderful. He often would pass tidbits of wisdom. He said about aging that it won’t be as bad as healthy people because I’ve had joint pain all my life. I know that’s true now because my healthy friends ask how’d I handle this all my life. Hope this gives you tiny bit of joy
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Anyway, getting older has not been easy for me. I have been on Disability for over 20 years and not working has not been fun. At least when my son was younger, I was able to stay active and feel like I had a life outside of my house, but now I really don’t have that. I was very sick for the past 6 years in and out of the hospital and rehabs,so I think the friends I had thought I died. I find it so hard because I am not always well enough to get out on my own (driving) and I live in an area where we don’t have mass transit. So.....there are periods that I go months without getting out except to go to the Doctor with my husband. I know this isn’t very positive, but all I can say is when I feel good I do my best to look up a friend and spend time with them away from ,y house even if we just have lunch or something or do a lot and I pay for it the next day...it doesn’t matter...make the best of those days...because you never know when the next good day will happen! 💜
He said about aging that it won’t be as bad as healthy people because I’ve had joint pain all my life.
I know that’s true now because my healthy friends ask how’d I handle this all my life.
Hope this gives you tiny bit of joy