Spoons

A few weeks ago, my hand cramped solid around a woman's leg while I was trying to put a splint on her, and then went limp for the rest of the shift.  Let's talk about spoons.

In my last post I mentioned that I recently got a lot worse as far as daily symptoms.  My legs and feet are definitely weaker than they were, but by far the most life-affecting change has been to my hands.  From the end of spring to now I've lost my ability to do most tasks that require fine motor control or forearm strength on my right side - and yes, I am very much right-handed.

Hopefully you are familiar with spoon theory, but if you aren't, here is a brief summary.  A girl with lupus was trying to explain to a friend how difficult it is to be chronically ill.  To show her, she gave her friend a handful of spoons as a visual aid to represent the units of energy/ function she had for the day.  Then they walked through the activities for a day, and the friend had a spoon taken away for each activity she chose to complete.  The friend quickly realized she simply didn't have enough spoons, or energy, to accomplish all the very reasonable things she wanted to do.  That was the point of the exercise - to illustrate that people with a chronic illness/ disability constantly function at an energy deficit for one reason or another that is out of their control, and that that deficit forces not just tough choices but decreased effectiveness compared to healthy people.

Having recently firmly crossed over from one camp to the other, I'm feeling this change acutely.

Normal healthy people have essentially unlimited spoons.  Sure, you're not going to climb a mountain and swim the ocean before lunch, but that's not what I'm talking about.  For a person without a major disability, your to-do list is mostly limited by time, not energy or function, and every day you complete a whole range of things that you need to do that don't even make it onto your list.  I can tell you this for certain because up until May or so, this was me.  Now I feel like I've gone from unlimited spoons down to maybe twenty-five, at least when it comes to using my dominant hand.  Mind you, this is for every task, not just heavy or difficult stuff.  So.  Brushing my teeth?  That's two spoons a day.  Makeup is a spoon because of the fine motor control.  A shower is a spoon.  Writing more than my initials?  That's a spoon minimum but usually more like 3-5.  Texting costs me a spoon.  Using eating utensils costs a couple spoons.

Sewing a laceration?  Fifteen spoons easy.  Same for splinting and most other procedures, because each of these activities encompasses a bunch of smaller tasks.  I found this out the hard way.  When I run out of spoons, my hand is completely done for the day, and if I push it, it might be done for two or three days.  I found that out the hard way too.

So after I had used a tape measure to measure my patient's leg, and manipulated the roll of splinting material, and used scissors to cut the tough, thick sheets of fiberglass, and manipulated the roll of material again, and pulled open several packages of ACE wraps, and gotten the fiberglass wet and then rolled it in towels (twice) to get it to activate, and molded it to her leg, and started to wrap the bandages around the fiberglass... I ran out of spoons.  My hand stayed in a claw for the rest of the splinting, and after I fled the room and stretched out the cramp, I was left with a limp noodle until the next morning.  I've done this twice more since then, each time with a different activity.

I am gradually, reluctantly learning to count my spoons early in the day, and to ration them.  As I mentioned earlier, this means both tough choices and decreased effectiveness - not cooking or doing chores or laundry on a workday, not doing procedures for the most part at work, etc.  I've been typing this post a little at a time over a week or so.  I can compensate for some things by using my left hand, but obviously that hand can't do everything a functional dominant hand could do - and it no longer has unlimited spoons either, and having two numb useless hands is more than I can handle.  It means putting more burden on people around me, which I hate and am not good at.  Everyone has been very nice about it, don't get me wrong, but I still feel like as an adult woman in my physical prime I shouldn't need help with basic tasks like writing or using scissors.

I just had my first physical and occupational therapy appointments and both therapists said that they could help.  I hope they're right.  I WANT MORE SPOONS.