"A word in earnest is as good as a speech"
~Charles Dickens: Bleak House

Sunday, September 18, 2011

Hard to put into words ......

I have been trying for 3 days to write a blog about having lupus. That was after all part of the reason I started this blog. To talk about my life with lupus, to share ideas with other people who have lupus, and just have an outlet. I considered writing about the symptoms, or sharing an interactive tutorial from the National Institute for Health, or giving people a symptom checklist and some helpful hints about how to get ready for a doctor's appointment if you think you may have lupus. But somehow all these resources seemed lacking. How does one explain to people what it is like to live in a body you are allergic to? So, not being able to complete this blog in three days seemed like to perfect way to explain it.

Having lupus is a lot about having good intentions & learning your limitations.
  • It is about knowing when you have the straw in your hand, before it breaks the camels back.
  • It is about scheduling .... & then rescheduling.
  • It is a constant learning experience, when you get a new symptom you haven't had before.
  • It is about trying to break through the lupus fog and see some light
  • It is about education without sounding like you want sympathy (because the last thing you want is more sympathy)
  • It is about realizing you have no control
  • It is about learning to give in (and realizing you are not a failure because you did)
  • It is about loving everyday that you feel ok
  • It is about not feeling horrible about the days that you don't
  • It is about asking for help with things you never thought about before
  • It is about compromise and sacrifice (not only for you, but those around you)
  • It is about accepting that your hair can be your worst enemy
  • It is about living with fear in the back of your mind - while you know lupus is generally not fatal, there is always the risk
  • It is about accepting loss - of the person you used to be and the things you used to be able to do
  • It is about accepting the new you and embracing it
  • It is about accepting compliments on your rosy cheeks - knowing that if they are that red things are about to hit the fan
  • It is about listening to your body when you want to go go go
  • It is about being able to have a good cry and move on
  • It is about not allowing your bedroom to be your prison
  • It is about hoping your better half doesn't tire of the emotional ups and downs you can't control
  • It is about the words remission and flare being a permanent part of your vocabulary
In case you haven't guessed this weekend was one of being angry at my body for not allowing me to live the life I would like without having to deal with the consequences. I did manage to get to all the kids stuff this weekend .... but had to miss a birthday party for a friend's 2-year-old. Friday I was in bed by 8:00 pm, Saturday I was in bed by 7:00 pm and this evening I am resting in my room because I have to work tomorrow and need all the rest I can get. In between the soccer games, food shopping and what not, there were a lot of tears of frustration.

So what is my advice to people with lupus .... I have none, I am really not very good at having a chronic disease. I do not listen to my body when I should .... instead I wait until it has to shout at me. So, this is my lupus blog ... I will probably write more after a weekend of being annoyed with the "L" word.

Tomorrow is another day, another adventure, another balancing act!

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