What Is Happening to Me? UPDATE! and Asking Additional Advice!

I am so glad to hear that S.!! I meant to tell you one more thing the other day. Do everything that you can to minimize stress in your life. This is not to be put on the "yah, it would be nice but my life is crazy and I just will get to that later" list. This is going to be a CRUCIAL step in your control of your diseasse. It is not a luxury it is a means for survival. We as a society vastly underestimate the damage that stess causes in our bodies. Many believe it is the trigger for cancer and other diseases ( I would bet that lupus flares could be triggered by stress). I know on my breast cancer forum a TON of women trace their disease to starting right after a particularly stressful time.
How to manage stress? One very important thing to do is to find a little bit of time each day to meditate. This complete turn-off of your brain does wonders for your inner stress levels. There are plenty of websites/you tube videos to help you do this. Once you get the hang of it it is pretty easy. Another good thing is exercise and yoga.
Good luck to you...keep us posted on your progress.

Hi S. - glad you got some helpful responses before. If you haven't already read this, it might be helpful and something you can pass along to your husband. It can be so hard for others to realize that an illness of limitations, when the person doesn't look ill, isn't about will power or toughening up. It can be hard to understand that your limitations are no less real than those of someone who has a visible and easily understood impairment. My mother has had chronic fatigue and fibromyalgia for 20 years and I still don't think any of us (my dad or us kids) really "gets it" so she has learned to set her own limits and adhere to them. Now we know that she literally cannot do two things in the same weekend or she will be in bed and in pain for a couple of days the following week, so we spread out family functions, but it took a long time for us to not say "really, you can't do X on Sunday because you're doing Y on Saturday?"

Anyway...here is a link to a story that explains to others what having limited energy is like - I hope this helps you to be able to communicate to your husband what a day for you is really like:

http://www.butyoudontlooksick.com/articles/written-by-chr...

http://www.facebook.com/people/Love-Live-Lupus/1000019448...

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