Chronic & Bougie
I’m a very “treat yourself” kind of gal. I don’t shy away from an opportunity to buy something that could make my life better, and I’m fortunate enough to have the spare income and privilege to do so. That being said, one thing I didn’t expect to come from having a chronic illness was the need to ascend to an even higher level of 'extra.' 💅🏻👸🏼
All kidding aside, my flare-ups are unpredictable, and the lower half of my body is incredibly sensitive due to muscle atrophy. Mental and physical stress can lead to severe pain and fatigue. Due to this, I’ve worked hard to give myself the financial and personal permission to “treat myself” more than the average person. Whether it's opting for a flight over a 3+ hour road trip, choosing booths at restaurants, calling an Uber for a one-mile walk, taking elevators instead of stairs, purchasing first-class for long flights, or using my lunch break for naps—I’ve learned that these seemingly small (albeit sometimes pricey) adjustments significantly alleviate my pain and fatigue. I suffered for a long time before this realization.
Another epiphany: I’ve discovered that each of my decisions, big and small, can have a profound butterfly effect. So, as another way to avoid flares, I make sure to ask lots of questions about upcoming plans, trips, and activities. A healthy person planning a trip may ask questions like:
How much will it be?
What are the dates?
How many days can I take off work?
What outfits should I bring?
When I plan a trip, I ask those same questions, but ALSO:
How long is the flight?
How long will I be sitting in the car?
Are we walking a lot?
Approximately how many miles?
Will there be time to rest?
Is there a pharmacy nearby?
What kind of activities will we be doing?
Is anyone in the group sick?
…. and a zillion more.
Not having the right answers to these questions can lead to flare-ups ruining a trip, being in uncomfortable social situations where I’m physically compromised, running out of medication, getting super sick, etc. So, are we treating ourselves? Mhm. Hell yes, we are. To others, this is what being extra looks like. But to us — this is what surviving looks like. And nothing is more powerful than giving yourself the permission to survive.
Be well,
Amanda
