Um olhar sobre a vida com uma doença crónica

Ever wonder what it actually feels like to have a serious chronic illness like Cystic Fibrosis?

Break time at the hospital

Christine Miserandino’s “Spoon Theory” is kind of legendary in the chronic illness world for giving healthy folks a glimpse into life with sickness (so much so that those with chronic illness often endearingly refer to themselves as “spoonies”). A young woman with lupus, Christine masterfully hones in on a major difference between being sick and being healthy: having to carefully think and make hard decisions about how you spend your energy each day-something the rest of us simply take for granted.

These decisions often come down to such basic things as choosing between doing the laundry or making dinner, going grocery shopping or making it to the gym. With a limited reservoir of energy, Emily and others like her have to constantly prioritize when it comes to their energy expenditures—and the stakes are high. Pushing beyond Emily’s limit, for example, can result in serious consequences, including lung bleeds, inflammation, and increased risk for lung infections.

All out of spoons

Beyond the pills and medical treatments, doctor’s appointments and hospital stays, often the hardest part of CF for Emily on a daily basis is its impact on her energy. It turns out, energy is a very finite, precious resource. Often her eyes are big and her ambitions even bigger, and her body simply cannot keep pace.

Three sleepy sisters at the end of a long day

So have a read. And next time you see Emily, ask her what her spoon count is for the day. We are willing to bet you will be quite shocked by her response.

Read it here >> The Spoon Theory by Christine Miserandino

Conserving her spoons before a big day of clinical trial appointments and tests