Living with Multiple Sclerosis is a full-time job.

An average day for this MS Warrior consists of rolling out of bed (sometimes literally), feeding the cat, stretching a bit, securing a cup of something, then checking the daily schedule.

There is nothing unusual about this except for the addition of all the interruptions between tasks. Because of MS, time needs to be allotted for the unexpected falls and spills that spur on sudden emotional outbursts that alter the morning schedule and result in periods of scrambled thoughts earlier organized.

Yep. That’s my morning as well as daily life with the MonSter.

That’s why it is essential to prioritize your spoons.

Okay, bare with me. The Spoon Theory is a real thing and it makes total sense.

When confronted with the challenge of explaining the fatigue she experiences living with a chronic disease, Christine Miserandino offered the following analogy:

“How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

Sitting in a café, Miserandino goes on to explain how she gathered spoons and used them to represent finite units of energy. Energy, for many of us with chronic illness, is limited and depends on many factors including stress levels, how we’re sleeping, and pain. Miserandino then walked her friend through the friend’s normal day, taking spoons, or energy, away from the friend as the discussion went on. By the end of the day, her friend wasn’t able to do as much as she wanted. When she realized Miserandino went through this every single day, her friend started crying. She understood, then, how precious time was for people like Miserandino, and how few “spoons” she had the luxury of spending.”

Spoon Theory may sound a little crazy, but to individuals living with a chronic illness, this analogy at least offers a tangible description. Being a Spoonie has grown into a population of like-minded individuals who identify with the challenges of a world unlike that of persons who don’t get it. Spoonies consist of both disease Warriors AND their caregivers.

You’ve heard it before, but it’s worth a mention: You don’t get it until you get it.

If you are reading this, you probably get it.

Grab a spoon and join the revolution. 🥄

Lisa, Lady With the Cane

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July 1, 2001, six months after the birth of my only child, I was diagnosed with multiple sclerosis.

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July 1, 2001, six months after the birth of my only child, I was diagnosed with multiple sclerosis.