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
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!