A friend was venting her frustration at having to slow down as she is getting older because things change. She missed being up all night and still being fresh and on her game for an early morning meeting. She was quick to point out that she could still pull off the early morning meetings after being up all night, but she would be doing so at a cost of being more drained later on in the day.

I completely understand, for I too have had to come to adjustments and realizations that how I used to do things can no longer be replicated exactly. However unlike my friend, I had to come to those realizations much earlier in life thanks to lupus providing me with a huge reality check. Sometimes you just have to find another way to get things done. And if you can’t find that other way, you find out the cost benefit of doing certain things and weigh out your options more closely.

My father once described me as a human version of the Tasmanian Devil because I was always into something on going somewhere, typically with my hair on fire as I raced towards whatever held my attention. My mother referred to me as a butterfly, flitting one place to the next, resting for short periods of time before throwing myself into activity once again.

Lupus made itself known, although not by name, through a series of events which resulted in my forced slowing down. Or rather I slowed down because I wasn’t sure what was wrong with me, but once we knew what it was the doctors would surely cure it and get me back to my usual self. Only once we knew we were dealing with lupus I was sure we’d be on the path to fixing it.

Except lupus, like other chronic illnesses cannot be fixed. It can be managed, the symptoms can be masked and controlled, but once you have it, you will always have it. It’s like the side-kick or constant companion you didn’t ask for or necessarily want, but you have now. And lupus, like other chronic illnesses, does not sit in the shadows or the corners just because the symptoms are being controlled. Lupus must flex muscle now and then and remind you that your life is now a life lived with a constant companion.

Being a bit stubborn, I was pretty confident in my early days of getting to know lupus, that I would be able to carry on as normal, keep up my pace of things and lupus would just sort of fit in with everything else. Lupus laughed at me; the kind of laugh that makes your abs hurt from how hard you are laughing as you wipe tears from your eyes. Lupus taught me that I’m far more creative than I thought I would be; I can budget like a pro. Lupus also taught me that you can’t always get ahead of change, you won’t always like the changes you must deal with, but if you can and will find a way to get done what is most important. You will just do things differently at times, and that is perfectly acceptable.