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No More Clean House!
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An_246211 posted:
I have noticed over the past several years that I can't seem to make myself do the dishes right after dinner. They can sit on the counter for several days before I do anything with them and I seem to have a lot more clutter in my house than I have ever allowed before. I don't know if that is from Lupus or just plain lazy on my part.

I do work fulltime 40 hours per week as a Case Manager and have never even considered the idea of calling my illness a disability even when I had full flares I was learning a new job. It took me a lot longer to learn the job and that was frustrating. I get home from a very busy day and I sure as heck do NOT want to cook dinner. So I have been picking up dinners for the past year or so. Does this sound like any of you?

I have had symptoms for over 30 years but was diagnosed about 5 years ago. Because people cannot see the Lupus and I always put on a happy face people do not believe I am sick.

For example, I told my mother I had Lupus, Sjogrens, Raynauds and a possibility of Schlerederma she flat told me I did not have any of those things. The rest of the family I emailed and let them know about my illnesses, just so they would know what was happening if I had a Flare. The only response I got back was from a nephew letting me know that this is what his mother in law died from. I guess they don't want to believe it or just don't want to accept it.

So I do not have to worry about explaining anything about my illness and I am not looking for a pity party but I should would like someone to recognize when I am having a flare and that would be explain my actions.

Does anyone else feel this way?
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SafariMom responded:
Sorry to hear that your family "just doesn't get it", and that you are struggling with a full work load and health issues.

I read a blog post the other day from a woman who had Lupus and she talked about running herself into the ground for 4 years, working full time and really pushing herself. She then talked about how she realized that she needed to start putting her health first and making that a priority in her life. And how this changed her outlook on life, and made her quality of life so much better.

If you are in a position where it is even slightly possible for you to slow down your life, then Do It. I keep reading that pushing yourself with Lupus has it consequences, and they aren't good. (My opinion with family)

I have learned with my family that sometimes I just have to be blunt and come out and say things, as they just don't get it- with other stuff sometimes. Just be clear with them what you expect.Say.. Here are my symptoms, here are my treatments, and when I am having a flare I may start needing your help. (I bet you are like me and hate asking for help) They may just not know what to say or how to help. I know when my mom doesn't know what to say, she usually just says something off of the top of her head, and usually offends me. Things like "Oh your probably just tired, you have had 4 kids so close together, and your body is not suppose to do that and ......" You get the idea.

Okay, sorry for the rambling post, I just wanted to offer some encouragement, and send you a Hug...

Love,
Bonnie
 
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KriziaBella replied to SafariMom's response:
I know what you mean I feel the same way not wanting to wash dishe clean the house have a bunch of clutter. I have lupus dignose 12 years ago. I also worked a full time job 40 hours have 5 kids not till last year in May I made the hard desision to go on Disabilty it was very difficult after working for 13 years for the same company. I just could not do it anymore it was too much had to slow down. Now I stay home with my kids trying everyday to get better. I have the same issues with my family no one cares they think because I look good in the outside I should feel fine. Hang in there! Take care!


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