Checking 

I hate having to check myself before I do anything.  It feels oppressive, unfair and wrong.  And yet I do.   Check myself.  I check myself before I comment on how I feel or mention if I’m doing something “normal”, or potential energy consuming.  There is no law, at least not one on the books, that says I need to do this.  But I do.  Because I have lupus.

Trying to get people to understand lupus can feel oppressive or unfair.  Because it takes up precious energy and uses emotions which take up energy and I have lupus.  So it’s oppressive in some way.  But I talk about it, I try to help people understand.  And I feel the weight of responsibility, which can be oppressed.

Trying to balance hanging out with friends, having a vacation and living with lupus can feel oppressive.  But I’m not dead.  I have a job, a life, love and such.  And now and then I feel almost like who I used to be.  So I do things I used to do.  And then feel guilty about this because I have lupus.  And that guilt is very oppressive.  I’m not sure if this again is a self imposed law, but I can’t seem to shake it.  I have guilt because I can do things I know other lupus patients can’t.  I have guilt because just when people sort of understand my lupus, I do something so normal that it’s like I’m saying my lupus isn’t that bad.  I have guilt because friends and loved ones have to deal with the rapid change of lupus and our plans.  And it’s all so oppressive and unfair.

So I check myself.  I edit my actions and words.  I edit my dreams and my choices and I feel the oppression of all of this as well as the weight of being sick.  It’s unfair to those in my life,because I am never able to be completely free.  It’s wrong because I want to be transparent, but I don’t want to create more worry.  So I check myself.  And it feels oppressive and I hate myself for knowing what I’m doing and still doing it.  And yes, I just checked myself again before sending this off.

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