The Spoonie Life

I sleep for 10 hours every night, and many days I nap for between 1-3 hours.

No, I’m not a toddler, nor am I an elderly woman. In fact, I’m 21 years old. 

I have an autoimmune disease called Sjogren’s Syndrome, which causes me to have periods of extreme fatigue. When I’m in the midst of a flare, I need a nap every day. I need to rest for hours just to get through 3 hours of work. At times it feels like I am a toddler or an elderly woman.


Energy as a Currency

What I have learned from this wavering fatigue level is that for me, energy is like currency. It’s worth more than gold, and I have to spend it wisely.

goldbarscoins_600x400.jpg

Just like with monetary currency, sometimes that means choosing between the things I want and the ones I need. When I go shopping, I have to prioritize spending money on food to spending money on something like nail polish. I have to spend my money on the things I need, rather than the ones I may want.

When it comes to energy, I have to make sure I have enough to do the things I need to do over the things I may want to do. For example, I need to make sure that I save enough energy to go to work, appointments, and other responsibilities like babysitting, over fun/leisure activities like hanging out with friends, shopping, etc.

All young adults my age are learning to spend money wisely. I have the added responsibility of learning how to spend energy wisely.


The Spoon Theory

You may sometimes see me use the word “spoonie” as a tag on blog posts or a hashtag on Instagram. The spoon theory was dreamt up by a fellow autoimmune disease fighter named Christine Miserandino. This theory is very similar to my theory of energy as a currency.

Christine was out to dinner with a friend, and began using spoons to describe how it felt to have Lupus. She gave her friend a bunch of spoons and explained that each spoon represented an activity. You only have a limited amount of spoons per day, so you can only perform a limited amount of activities in a day. 

This was an attempt to explain the choices that people with autoimmune diseases have to make. We can’t count on having enough energy to get through our whole to-do list, so we have to think ahead and prioritize.

Most young people wake up with the energy to do everything they desire in a day. They start the day with an unlimited amount of spoons. But when you have a chronic illness that affects your energy levels, this is not the case. Your number of spoons is limited, and it varies day to day.

Here’s a helpful image:

spoon-theory-explained.gif
from: theunchargeables.com

I share this not to make you feel bad for me, but to help those who know me understand why sometimes I may have to cancel or decline plans even if I really want to do those things.

Plus, I want other spoonies to know that they’re not alone! Especially for young people who are looking ahead at the rest of their lives, it can be daunting to think that you’ll never have the energy to get through everything you want to in a day. But it’s all about learning to pace yourself, understand your own body, and be able to predict and plan your day according to your energy levels.


To end this post, here are some fun spoonies memes:

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s