Having a chronic illness is a lot like having a job. For some people, it's a full time obligation. I'm lucky; mine is just part-time.
And, of course, the head honcho at Chronic Illness Inc. is the craziest, most mercurial, unpredictable nut job. Sometimes, everything is cool. But sometimes, out of nowhere, antibodies are called into action to do things that don't make a lick of sense ("Boss, why exactly are you attacking my salivary glands today?").
I don't think healthy people understand how much time it all takes up. Running between doctors' appointments, picking up prescriptions, following up when--invariably--something goes wrong with filling the prescriptions, watching our schedules so we don't make ourselves sick. . . and all the endless waiting: in waiting rooms, on hold, in line.
The disease means we can't do as much as other people, but it also means we have more things we need to do. I guess that's irony?
Now that I've added school to the mix, I've realized how important it is for me to rely on other people, which is really hard for me. I like to be the person other people turn to, but I've noticed that a lot of people are actually glad to have a chance to return the favor. Considering how much I enjoy helping, it shouldn't be a shock . . . but it is. It's a wonderfully amazing surprise.
Even so, I really wish I had a personal assistant just to help deal with my second-shift job of managing my illnesses.
What about you? What part of having a chronic illness is the most work for you? How do you cope?