Thursday, 4 July 2013

I Hate It When....

Image: headstone.  Text: "At least you don't have cancer". No, I have a horrible unpredictable disease that could kill me, etc..... but at least I don't have cancer.OK, I hate lupus generally, but some things are more annoying than others.  My way to deal with it is have a little rant, and try to laugh at myself.  So here's some of the things I hate about lupus:


  • When I actually use the energy to cook a meal, and then am too nauseous to eat it.
  • That I have to take pills to manage the side effects of my pills.
  • When people compare my condition to others and tell me how much worse it could be. (I'm not saying others don't have a rotten time, just that them having a rotten time doesn't make me feel any better.)
  • That I can no longer rely on my memory and forget what I've just done.
  • That I can no longer rely on my memory and forget what I've just done.
  • That I can no longer rely.... oh wait....
  • That my afternoon nap is no longer decadent - it's essential for survival.
  • That a day out requires several days to recover.
  • That I'm no longer earning a living.
  • That my living expenses increased dramatically (with costs of medications, etc) when my income dropped.
  • That things I used to love doing are now hard work.
  • That even something as simple as going for a coffee with a friend has to be calculated into my "energy budget" for the day.
  • That my brain, which earned a postgraduate degree, is now overwhelmed at times by a shopping list.
  • That I have a prednisone "buffalo hump".
  • That my hands get tired when I read an actual paper book. 
  • That sunlight can give me strange rashes and makes me tired.
  • That when I'm walking with family or friends, everyone has to slow down for me.
  • That this list could go on and on for ever....

2 comments:

  1. My biggest thing is someone that does not understand to say "Just wait till you get older it's going to be much worst, they have no clue"

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  2. It's amazing how similar the autoimmune diseases are - mine is different, but I relate to almost every item on your list. The "energy budget" is hard for people to understand. A short walk for coffee is a lot harder for me than it used to be, and many days it's impossible. Hopefully things brings some understanding for people.

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