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For the Days When You Don't Have as Many Spoons as You Hoped

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A chronically ill patient can always tell how well they are doing by when their next follow-up is. As recently as December of last year, I was granted — hold on to your hats — a three-month follow-up. And I made it. I made it exactly three months, to March 14th. In two years, that’s the longest I’ve gone without seeing my primary care physician. There was a hospitalization somewhere in there, though. So while I celebrate three months without my PCP… there’s that. And that was kind of the beginning of the end for me.

I was back in my PCP’s office within a month, then in the gastroenterologist’s, the rheumatologist’s, the psychiatrist’s, the pulmonologist’s, the neurologist’s, the cardiologist’s and even some of those fancy people at Headquarters.

Yes, I have seen all those doctors since April. Multiple times in fact, for each one. I went from a precious gift, a three-month reprieve of doctor’s appointments and testing and three months where I was actually even able to find the energy to work part-time. It was a great three months.

And then, just like that, it was over.

I was back to doctors all the time and follow-ups every two to three weeks.

That’s a life of a spoonie.

There’s so much to the life of a spoonie.

When we have a good day, we celebrate. We push ourselves past our limits, knowing that it will wreak havoc on us later because we want that one, good day. If we get a couple good days in a row, suddenly we are doing everything, going everywhere. Three months is a gift, so precious and rare, that I’ve only had it, like I said, once in two years.

But then, inevitably, there is the crash. The burnout, flares, exhaustion and pain. We climb back in bed, and we go back to our spoonie life where we may only have five spoons a day and showering takes all five, so that’s a no-go. Even with a shower chair, it is still a lot of work and spoons.

On days like that, when I have five spoons, I make a goal for myself. One goal. Sometimes it is to get dressed. Sometimes it is to brush my hair and teeth. Sometimes it is to get on the couch. Sometimes it is to shower.

But I realize, on these days when I have spoons, that my goals are just that: goals.

I may have to make revisions to my goals, depending on how I’m feeling that day. That was hard for me at first because it made me feel like I had failed at the one simple thing I had to do. But I found that if I reframed it as a revision to a goal, like a rough draft to an article or a tweak to make the perfect recipe, if I made it like that, I didn’t feel like such a failure.

OK, so I didn’t get to take a shower today.

What can I do instead?

Today, I got dressed.

Tomorrow, I might try that shower again. Or maybe my goal will be to get dressed and sit on the couch.

I have learned to take it day by day, and everything, everything, is dependent on how I’m feeling.

That is, in fact, the most important line a spoonie can learn to use.

“Depending on how I’m feeling….”

Many times we are asked to make commitments in advance, which isn’t a problem for someone who isn’t mentally or chronically ill or disabled. But for us, asking us to make a commitment to lunch tomorrow could be way too much to ask.

So fellow spoonies, I encourage you, when you make your goals, when you decide on your schedule and your priorities, when you receive an invitation… make sure you always give yourself room for:

“Depending on how I’m feeling….”

Follow this journey on Living Without Limits.

Originally published: October 5, 2016
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