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....


  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"

  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.


Thanks for being part of the conversation.

Your comment will be visible after moderation.