I got old-lady Christmas presents this year. It was fine, because I asked for them–most of them–but I am still struck at how I actually gladly unwrapped sheets and pillowcases. The little girl in me wanted the way-cool Crayola Crayon Maker, but the 40-year old arthritic could only picture the mess it would make. Besides which, the 40-year-old arthritic hadn’t had really nice new sheets since her wedding twenty years ago. Sheets are one of those things that just kill me to pay for. It’s like paying for a new muffler. You know you need it but there’s absolutely NO joy involved. So I asked for brand new high-thread-count sheets. And got them.
Now I’m afraid to put them on the bed, but that’s another story altogether and involves dogs with muddy paws and enthusiastic digging instincts that tend to shred anything and everything in their path.
In addition to the sheets and pillowcases my mom and dad gave me a book called Doing Well At Being Sick, which was pretty much about what you’d imagine it’d be about.
I was reading through it yesterday and was struck by how much of it is stuff that I already now and have said. That makes me feel good, because it makes me think that perhaps I AM “doing well at being sick” for the most part. But what struck me anew was the chapter where the author–a Lupus sufferer–writes about her packing lists. As I read through all the lists of medications and health aids she requires on a daily basis two things occurred to me. The first was that it could be–and just might eventually be–much worse. Instead of the six daily medicines I have now the pill and patch count could be well into the thirties. Instead of the “scarf and slippers” that I always have to wear in the winter to stave off a flare I could, like that book’s author, need a veritable drugstore’s worth of paraphinalia to see me through an ordinary day.
The other thing that struck me was how much these chronic illnesses are indeed JOBS. Jobs that, like motherhood, cannot be escaped during evenings, weekends, vacations and holidays. There is no asking your RA for time off.
It helps to know these things because during Christmas while everyone else talked about how many days off work they had and how many vacation days the holiday was consuming I felt horribly guilty. I was free and clear and had no boss to report back to. I felt lazy and ashamed. Now, though, it occurs to me that the entire Christmas holiday I had to contend with the elves of pain and tiredness, wearing my scarf and slippers like a good patient. So now I don’t feel as bad. Most of the time.