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· Inky
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Dear beanbag
I am sorry you are feeling like this just now, you need to be kind to yourself a bit I think. (I recommend chocolate, warm baths and sleep whenever you want - if you can of course).
The roller coaster of emotions you feel are, in my experience, pretty normal for lupus but over time I have found them easier to understand so they don't hit me like they used to. My partner usually knows I am flaring when I start crying about nothing very much and my anxiety levels go up! Also like someone else said Pred can make you moody or high. Or both!!
You are absolutely right to do something you enjoy like card-making. I got into embroidery and patchwork when I got very ill and it really does help, I got bullied into classes by my community nurse.;) The bonus was I was not working so had more time to do my hobby and get better at it.
One thing I know about this illness is that it is best to live to the full in the present rather than worry about the future tooooo much. I am well when I least expect it and then can be not well at all for seemingly no reason. I do appreciate that this up and down stuff, plus the physical problems, makes it hard to work and also I understand the financial worries. I chose to accept a simpler life with less money because work was impossible for me but it is not always an option for those with families.
Everyone is different with Lupus so that question "will I get any better" is not one I have ever got an answer to. However ffter 8 years of coping with lupus I am one of those cases that is really no better and yet not much worse. What is better is the way I deal with the pain, fatigue, infections etc. etc. And my asking for help (which I was lousy at before, I had to swallow an awful lot of pride). So overall medically I a tiny bit worse, psychologically I am much better and would go as far to say I have become a kinder,less frantic, more patient and caring human being. So lupus is not all bad all the time for some people as you can see.
Gentle hugs... take good care of yourself, there is only one of you are you are special.
Sara
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