There is a great post about what it’s like to have a chronic illness that explains what it’s like to have lupus to a friend who is healthy. Essentially, her “Spoon Theory” says you wake up with a limited number of “spoons” and everything you do takes a spoon, or two or three. You have to decide how to use your spoons, and once they are done, they are done. You don’t always get the same number of spoons every day, and even tiny decisions, such as washing your hair or shaving your legs, will affect your spoons. I highly recommend reading it for anyone who has a chronic illness or knows someone who does.
I don’t put myself in the quite same category as these brave people who struggle with illness every day of their lives (although I might if the oncologist decides interferon is for me). However, the spoon theory definitely applies to me right now. I know this because I’ve completely run out of spoons the past two days.
Both days were full of good things, visits to people and outings, both fun and medical, but by then end of each, I had fully hit the wall, as my mom says, and I was DONE. Friday night, I found my retainers for bed, but by the time I was laying down in bed, I realized they were not in my mouth and I had NO idea where they were. Turns out, I had put them in their “safe place” and had no memory of doing so. Last night, I was with wonderful friends and had a great time, and even though I spent the last hour of our visit with my eyes closed (they really are wonderful friends), I was still WAY out of spoons.
So today was spent in bed, on the couch and in our glider, doing essentially nothing. I’ve been working on this post for two days, but only have had the energy to finish it now.
Getting back to “spoons,” this has become a great metaphor for me and my friends, because, sadly, far too many of them also have serious health issues. Within just my close circle of friends, I have at least 5 friends, all under 30, who have serious health issues. Things like cancer, MS, severe chronic pain, etc. It’s bizarre and completely unfair, but it does make for very understanding friends.
I started using the idea of spoons to check in with one of these friends, and it’s a wonderful way to see how the other is doing without asking “How are you feeling?” especially since we all want to put on a good face for those we love. Instead, we ask “Do you have enough spoons?” or “How many spoons do you have left?” We can also use it to tell the other if we are approaching our end because, socially, it’s much easier to say “I’m running out of spoons” than something like, “I need to leave soon because I’m tired.”
Not only have I learned that I definitely have a limited number of spoons every day, but I’ve also learned over the past two days that although I’m doing amazingly well for having been in the ICU literally a week ago (!), I still VERY much need to pace myself. Even a few short 20 minute visits are enough to wear me out after they are over, although I never realize how draining they are while I’m in the middle of them because I really DO enjoy seeing friends and I really AM enjoying the visits. But once the friend leaves or I get back home from the outing, I can feel a difference in my energy and I do need time to regain that.
Please don’t take this post as an indication that I don’t want to see people or don’t enjoy your company, but please do keep it in mind when visiting me (or anyone who has recently been ill). I *love* the company, but might not know my own limits enough to be able to say when it’s enough.
And if I do let you know that I just don’t have enough spoons for a visit that day, please, please don’t take it personally. I fully expect that every day my store of spoons will grow (especially if I am more conscientious about taking care of myself), so hopefully in a few weeks, this won’t even be an issue!