Woman on the seesaw

Do you remember playing on the seesaw as a kid? Not the times you played with someone else, but when you got on alone and tried to make it balance? You'd try to stand in the middle, it would tilt one way, you'd lean towards the other end, then that end would tilt down and you'd lean the other way. It was a matter of constantly shifting your weight, trying to get that exact centre to balance both sides.

That's what life with lupus is like. It's a constant battle to balance everything:

• how much I do for myself to save money vs how much I pay others to do to save energy
• how much exercise I get to keep joints moving vs how much rest I get to avoid fatigue
• how much energy I budget to work vs how much for my family vs how much for friends and partner vs how much for the things I need for myself
• needing to get things done vs needing to have a nap
• using energy driving vs the risk of having to stand on public transport

My balance constantly changes. On days and weeks when I'm well, I have more energy to budget. Sometimes I have more pain and less fatigue. Sometimes I have more fatigue and less pain. Sometimes I have brain fog and don't know what's going on anyway!

My GP constantly warns me about packing too much into my life when I'm feeling well - in case I use up the precious little reserve of energy I've built up, or commit myself to things I just won't handle when I have a bad day or week.

I know everyone has to balance their work and personal lives. Everyone has to balance their financial budget. I remember what it used to be like before I got sick - believe me it was different. Now the struggle to keep balance is so much more serious!