Friday, May 3, 2013

Lupus Awareness Month

I was diagnosed in March 2008 with Lupus and Scleroderma.   It took me 2 years and 3 doctors before I found a doctor that would actually listen to me and take me seriously.  Then it took almost another year of tests before I got a diagnosis.

In that time I could barely get out of bed.  I would sleep 15 + hours a day.  I felt like I was coming down with the flu, but I never actually got sick.  I hurt.  A hurt that I couldn't describe.  To this day its still hard to describe so that people can understand.

Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.
I have my good days, and bad.  Sometimes I can tell when I'm getting ready for a flare, and other times I can go to bed feeling fine and the next day I'm not.

I have also learned that I have to spare my energy.  When I first was diagnosed and the medicines were starting to help me feel better, I would try to fit as much as I could in on the good days.  I'd wake up with energy and feel like I needed to make it count.  Then I would spend the next 3 days trying to recover.

Now when I wake up with energy I try to limit myself to 1 hard chore and 2 medium chores.  If it takes longer to get things done, so be it.  Especially now, being the only parent, I have to be able to function to take care of my kids.

I have had many people ask what Lupus feels like.  Its not something you can really describe in a way a healthy person can understand.

Then I came across this excellent article by Christine Miserandino called The Spoon Theory.  

She does a wonderful job explaining what its like to live with Lupus and how simple everyday chores can be hard for us to deal with some days.

The Spoon Theory doesn't just work for Lupus, it works for many "invisible" diseases.  We used it a few times to explain to people why Tin Man wasn't able to do things.  He looked healthy, but he was far from healthy.  But because he wasn't on oxygen 24/7 people didn't see him as being that sick.

I urge you to share The Spoon Theory with your friends, family, and readers. 

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