Tuesday, November 19, 2013

Operating With A Serious Spoon Deficit


Lately I have been operating with a serious spoon deficit.

For those who don’t know, the idea of the spoon theory is that someone with a chronic illness has a limited number of spoons that they can use each day, and once those spoons are gone, they pretty much can’t do anything other than rest.

These days, I have lists of things I have to do that never all seem to get done when I want to get them done. 

People without chronic illness don’t understand, and they don’t realize that it literally means I could be out doing something and suddenly feel sick and like I have to lie down.

I’m running on fumes.  Less than fumes.  Not even on reserve.  My reserves are gone.

I can literally be stopped in my tracks.    

And it has caused me anxiety when I am not close to home but realize I am running low on spoons.  How will I get home?  Will I have to find a cab instead of the subway or bus?  Can I keep from getting sick, regardless of the mode of transportation?  Can I walk the half a block from where I get dropped off until I get into the apartment building?  

I don’t have copious amounts of energy.  I have to pick my battles wisely, and sometimes bow out of battles altogether.    

And this state of affairs bothers me a lot.  I don’t want to have limitations.  I don’t want to say no to things.  But I don’t have a choice. 

For most of us with chronic illness, our days are variable.  Some days are good – we have more energy and less pain – and some days are bad.

Some days all my spoons get me is out of a bed, a shower, and breakfast.  Some days – rarely – it’s like I am my healthy self again. 

For about the past two months, I constantly feel like I am coming down with something.  I get a cough, my throat hurts, I spike low-grade fevers, I get these weird skin rashes.  This is my immune system telling me it’s time to take a break.  But I can’t really.  So I buck my immune system, but I can’t buck my lack of spoons.

When the spoons are gone for the day, they’re gone.  And I can’t bank them from days when I don’t use that many.  It’s always a finite number of spoons. 

Say I start the day with 12 spoons.  On a day that I have school, my spoon count would look like this:

Get up – 1 spoon
Eat breakfast – 1 spoon
Get dressed – 1 spoon
Bus – 1 spoon
Subway – 1 spoon
Train – 1 spoon
Walk to class – 1 spoon
Class – 1 spoon
Eat lunch – 1 spoon
Class – 1 spoon
Class – 1 spoon
Walk to train – 1 spoon
Train – 1 spoon
Subway – 1 spoon
Bus – 1 spoon
Dinner – 1 spoon
Get ready for bed – 1 spoon

Count that.  That’s 17 spoons right there when my allotment for the day is 12.  Now wonder I am so exhausted all the time.

It’s stunning for me to realize how little my body can actually handle.  But it makes total sense…to me…at least…

It’s easy for people who aren’t chronically ill to be judgmental and use terms like lazy, aloof, or uncaring.  But those characterizations couldn’t be further from the truth.  Like I said, I would give anything to do everything I need to everyday and not have to take time off after a particularly hard or busy day. 

But that’s not the reality.

If you are not chronically ill: How much of your day would you actually get done if you only had 12 spoons and every activity costs you a spoon? 

2 comments:

  1. I wish there were endless spoons for everyone

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  2. Leslie, is it possible your lupus is flaring? In addition to having more on your plate than you have spoons to deal with?

    I hope that you find an extra stash of spoons somewhere (and if you do, could you pretty please send some my way too?)!

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