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Worse than an inconvenience but less than an outright emergency

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Along with major emergencies, chronic illness gives us many days with situations that are worse than an inconvenience but less than an outright emergency…such as having to rush home from work because of violent GI problems or having an appointment that involves  things more invasive than just looking down your throat with a tongue depressor. Despite the fact that these instances can be extremely frequent, they’re never quite feel commonplace.

The years I spent getting acclimated to being chronically ill – and by that I mean, like, the first 8 years – I felt as if nothing else can could get done on these days, nothing could be enjoyed; it was declared a disaster, and a total loss.

I look back now and realize that a lot of that was emotional. I felt guilty for going home from work early, I felt embarrassed I couldn’t stay for the whole baby shower, I felt angry and despondent that part of my day was interrupted by something inconvenienced or unpleasant. So I plunked down on the couch and lived the Sick Girl part well all day and night.

Sometimes we are really so sick that the day is a wash – which in that case – staying in bed all day is totally the best and only course of action!  But with my illness, there are often days that feel like an emergency room disaster and then gradually improve to a kind of icky/painful stay at home day instead.  And the difference between me now and me in the beginning of my illness, is that on those days, I’m able to move on emotionally and mentally. Which is much more enjoyable and productive.

Some examples.  Just because I had to cancel lunch because I’m on muscle relaxers and can’t drive doesn’t mean I can’t clean out my sock drawer or write a bunch of thank you notes.  (Although I wouldn’t mess with too many big words, because as my first rheumatologist used to say, “The only muscle these things actually relax is the one between your ears!”)  Or just because you had to come home from work due to that violent bout of violent diarrhea doesn’t mean there’s anything wrong with later in the day catching up on your house cleaning. (It would be bad form to hit the mall though, you just know you’d run into a coworker there!)

I think we often call a day a wash when it isn’t because we’re a little traumatized by the minor emergency (some things you just never get use to), we feel guilty that we had to cancel working/parenting/whatever the original plan was, OR we feel we must play the role of a proper Sick Person so that others know we really are sick. This last reason is especially relevant if people close to you don’t understand your illness or are still in denial that you need special accommodations.  That just sucks, I’m sorry if that’s your situation.

But once the people around us have caught up with reality, (or you’ve just moved your reality away from them!), it’s really quite something to be able to move on from a hellish midday and actually have a slightly productive or slightly fun evening at home. (Again, hat’s only if you’re physically up to it, of course.)  It’s emotionally healthy because it stops the illness from controlling your whole day, and often it’s physically healthy as well because if you sleep ALL day, your sleep patterns could get all thrown off.

My mother was talking to a friend on the phone, asking about a surgery the friend recently had because of the breast cancer she’s fighting. The friend’s surgery story ended with something like, “…and I didn’t have to stay overnight, so I left the hospital and stopped at the Armenian Market on the way home.”  I thought that was so great, and a perfect example of not letting the disease own every minute of your day.


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